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ARCHIVE OF UPDATES Page 1 2 8/14/07 - 11/18/08 |
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11/18/08 Another week has passed and Bruce is holding his
own-Perhaps even better than that. One of the doctors at our lat
Neurological VA visit in July suggested that Bruce might be having
low-grade seizure activity. But, at the time I didn't really see it.
However, I am beginning to see, what I think, looks like just that. One
day this week, Bruce was "gone"-Not his normal self at all. We couldn't
get him to focus or respond in any way; his body was stiffer than usual
and difficult to move, and he stayed that way all day. To make things
worse, after much thought, i finally agreed for Bruce to have a flu shot
and they gave it to him that same day. I personally do not believe they
are worth the risk -Way too many harmful ingredients for me, and it's a
crap shoot as to whether or not they contain the strain of flu that's
flying around. But, in Bruce's case, I felt it probably was worth the
risk. Unfortunately, it made him terribly sick the following day, and he
looked just horrible. For the first time in a long time, I went home
worried, because he had two very bad days in a row. But, on my next
visit, I came in to find him back to his old self. He was very
responsive, laughing and smiling and wiggling things. Now, I'm even more
suspicious that there might be low-grade seizure activity. The Neuro doc
took an EEG when we were there in July, which was inconclusive for
seizures, but recommended it be repeated after stopping Bruce's seizure
meds. Unfortunately, this is one of the many recommendations by the VA
that has not been seen by Bruce's doctor and has not been addressed. It
hurts me terribly to think that he may be going through days like that
unnecessarily. This week I meet with a private company who will go
through Bruce's records and find any other problems. After which, we
will meet with the Director to voice our concerns. This situation has
been the source of ongoing stress for me. Once again, I ask our prayer
angels to send Bruce your love and healing thoughts, and to send me
strength to deal with these stressful issues as they arise. Please also
continue your prayers for Bruce's doctors (Mr & Mrs), the Blaire House
staff who continue to keep Bruce loved and cared for, and the 11/11/08 I cannot believe how long it has been since I have posted an update! It seems that the sumer flew by. I was absolutely distracted by the beautiful Fall colors this year, and just didn't realize how quickly it all passed. During all of this, Bruce has been doing very well. He and I spend every possible moment outside in the fresh air. Even though the temps have dropped, we still take advantage of every sunny day we can. And I plan to continue this right through the winter as long as there is a path through the snow for his wheelchair. He always loved being outdoors and he still does. Bruce remains on Ambien and he continues to show progress with it- little baby steps, but always in the right direction. He smiles/laughs all the time now, and he makes small movements on his own. Yesterday, he lifted his entire hand off his lap table. He did this 4-5 times when asked to. It was the largest, most deliberate movement he has had since he was hurt 15 months ago. He has had 2 VA clinic appointments. The last one on Oct. 15 was with the Traumatic Brain Injured clinic. Fortunately, the doc there knew our Social Worker daughter-in-law, Jennifer, from when she worked with him a few years back. He gave Bruce VIP care and suggested that all therapies be continued with special splinting to Bruce's right leg and foot which are more contracted than the other side. He took an x-ray to be sure Bruce's back was not a source of pain for him -Some arthritis, but, thankfully, no disc problems were seen. Although Bruce is getting stretched by PT, he is not getting rehab per se. His speech therapist, however, is very aggressive with her therapy, and has been working with Bruce 5 days a week for several weeks now. He is showing very good progress with his tongue movement and he is showing signs of trying to vocalize. Unfortunately, our lead angel, (Mr.)Dr. Sidhu is still not back with us yet, and that has made it very difficult to get things done for Bruce- I have to be on top of everything and be the driving force behind critical aspects of Bruce's care, and It has been a tremendous source of stress for me . Bruce's first line of care, his nurses and caretakers are amazing-They are the reason I keep him at the Blaire House and I believe they are responsible for the amazing healing of his body and the progress he is making. They treat him like a person, and take offense when anyone sees him as less than that. They continue to go above and beyond for him every day, and they, too, are frustrated, but there is only so much they can do. It appears that the difficulties lie somewhere beyond that first level of care, in more powerful hands, I'm guessing. My wonderful son (who works in nursing home administration himself) has hooked me up with a private company which , hopefully, will help resolve some of these issues, and I am very much looking forward to that! In the meanwhile, I try to remember that everything is happening just exactly as it should. All of this is part of a divine plan, and I must allow things to happen in God's time, not my time. I struggle to exercise patience and to accept what is, but I do know that all will be well in the end. I thank you for your continued support and attention to these updates on Bruce. I am always touched when I realize how many people still check in here to read up on Bruce, and how many people continue to pray for him and me. Know that we are grateful. Know that your prayers work. Know that you are loved. Blessings- Joyce 10/8/08 I am pleased to report that Bruce continues to show small, yet consistent signs of improvement with his daily doses of Ambien. He remains in a higher plane of awareness most of the time where he can and will cry or laugh readily. PT, OT and Speech have all begun working with him this week. He seems more comfortable struggling less with the muscle spasms. Occasionally, an arm or his head will move on it's own-We are not sure if it is intentional or not. Speech is targeting communication issues right now, so we're hoping to find a way Bruce can tell us , at the very least, "yes" or "no". And, the VA continues to book all kinds of appointments for Bruce at various clinics in Boston. He has an appointment with the Traumatic Brain Injury clinic on October 15 for more testing and some advice on how to proceed with his "rehab". There is a whirlwind of activity around Bruce and if love, prayer, and the support of Godly people can heal him....then he'll come home one of these days. Your prayers and intentions are magic: They have moved mountains and are creating miracles before my eyes! We are so blessed to have you on this journey with us.- Joyce 10/2/08 Yesterday, we tried the first does of Ambien on Bruce. We didn't see a miraculous back-to-old-self recovery like those portrayed on "60 Minutes", but we did see some improvement on a smaller scale. Ambien, as you may know, is a sleeping medication-And a pretty good one, I am told. You take it and drift off into a luxurious sleep for 8 hours. Bruce did not do that. He stayed wide awake and actually became brighter as time went on. His focus was excellent with those eyes following everything that moved. He was blinking responses to questions and he was moving his toes when asked. The drug is ordered twice a day for as long as we want to keep trying it. There have been cases where some brain damaged patients have seen some good improvement with repeated exposure to Ambien over time. Of course, all of us who love and care for Bruce will continue do everything we can to give Bruce every opportunity to recover his full mind and body. But ultimately, it is his and God's plan that we must accept. If Ambien does not bring Bruce back, then it wasn't intended- All that is happening is exactly as it should be. I accept the will of God and Greater Powers of the Universe, and I honor those choices made in the spiritual realm, but, for Bruce, I won't stop trying . As long as he continues to fight for his full life, we all fight with him. The VA has scheduled another appointment for Bruce with
the Traumatic Brain Injured (TBI) clinic on the 15th. I believe they
will follow up with more testing and possibly BOTOX injections to help
with muscle spasms. All in all, the VA seems to be taking a
proactive roll with Bruce which pleases me beyond words. I do need
prayers for the following, however: Bruce's VA case manager has not been
particularly useful to me since the onset, but she hadn't done any harm
either. So I tolerated her. Now, however, she has become toxic. She does
not like me-resents my involvement, and will not cooperate with me at
all to the point that she has refused to release information to me. She
is an unhappy person with hate in her. I have asked for her to be
replaced. Please pray for Kathy K.-That she will find peace and
gracefully step aside in order that Bruce can have the very best from
all who care for him. Also, the Blaire House Director still has not
returned my calls from last week, had no idea what was going on with
Bruce until yesterday, and has still NOT ordered therapies for Bruce.
Please pray for compassion from Martha M.-That she can and will place
Bruce's 9/25/08 Yesterday, Bruce and I went to the VA for a Neurology consultation. My hope was to get therapies ordered for Bruce so that he could have all the support we can give him while he is experiencing these little windows of awareness he has been having. What I got, was sooooo much more! Bruce was in super great form for the exam. He wiggled his toes to commands and stopped wiggling when told to. He gave the Doc a big smile and even made some noises when asked questions. He had a lot of mouth movement, but his eye movement was sluggish. The VA Doc suggested that we try Ambien, the sleeping medication which has "woken' some brain damaged people. (A few of my friends have told me about the TV program which aired recently about it and it was on my agenda to ask him about that during our visit.) So, we are in the process of obtaining the medication now and will try it as soon as we get it. (BIG prayers here , folks!) And the Neurological team also felt that rather than Bruce base lining at a dulled state with windows of awareness, that it might be just the opposite: They felt that Bruce might have a baseline of much higher awareness but be having seizures which are keeping him from these higher levels. They suggested that Bruce's sluggish eye movement might be an indication of seizure activity. An EEG was taken, but I do not know the results of that yet. And, as if that wasn't enough, they all agreed that aggressive therapy was a must for Bruce - PT, OT and Speech were all ordered for him! The news was so exciting that I forgave the VA for sending a regular old passenger transport car for Bruce instead of an ambulance (An ambulance was sent after our nurse angel, Ann, went ballistic!) ...Or when they didn't have a stretcher for Bruce when we arrived,.... Or, when they didn't have ANY nursing care for him for the entire 5 hours we were there, (We had to call over a nurse from the hospital building to help me change Bruce and flush out his g-tube),......Or that generally, they weren't at all prepared for a quad who cannot communicate his needs and who requires 100% assistance........ (Some one at the VA didn't do their job!.....Remember my fears about going to the VA????) In spite of the obvious VA limitations, I left with so much to pray for, and to be hopeful about.- So many miracles within reach........ And, Bruce's story continues to keep us on the edge of our seat. Please know that we feel your love and prayers: And they have never been needed more. Blessings-Joyce 9/22/08 Friends- Tomorrow, 9/23/08, Bruce goes to the VA for a Neurological exam which will be compared to his previous exams to see if there has been any improvement in his cognitive condition. It is an important day for us. I am hoping that there will be enough evidence to get Bruce the therapies he needs to be comfortable and to reach his highest potential. Please send out your best prayer intentions for Bruce and for those who will be evaluating him. As always, we are so very grateful for your love and prayers. Joyce 9/6/08 I am sorry for the delay in posting this update on Bruce. There are some amazing things happening with him which have consumed my time for the last 2 weeks, but it looks like we have things in place, so that now I can take a few minutes to share it all with you. As you have read, Bruce has been showing signs of neurological improvement; small signs, but significant signs in that he is doing them entirely on his own, without the aid of brain stimulating drugs, therapies or coaxing from anyone. And, he is doing these things a full year after his brain injury! He continues to have windows where he is able to raise to a higher level of awareness. We can see this by the ease of his eye movements, the intensity of his focus and tracking, his mouth and tongue movement and his ability to vocalize sound in response to his surroundings. At these times he either laughs or cries (or sometimes both), and he looks frightened and confused. He seems to recognize faces or voices, especially his daughter's voice over the telephone. It is sometimes difficult to see Bruce upset like this, but we know that these floods of emotions are part of the awakening process, and a good thing for Bruce's recovery. Our dear friend and lead angel, (Mr.) Dr. Sidhu, is still recovering from his own heart surgery. His wife, Mrs. Dr. Sidhu, has been our new angel. She tells us that Mr. S is doing well and asks about Bruce all the time. She is arranging a Neurological consultation with the VA to investigate further the gains that we are seeing in Bruce. I don't want to jump the gun, but my prayers are that the examination will show enough improvement to get Bruce back into Spaulding (or a similar acute rehab setting) so that he can get the body therapies he needs to support the healing in his brain-Your prayers for this would help us with this miracle. If it is not God's (and Bruce's ) plan, then, perhaps the exam will indicate enough so that Bruce can receive some therapy right at the Blaire House. I have my new VA angel patient advocate, and my beloved Blue Cross case manager busy working out plans and contingent plans. I met with the Blaire House Exc. Director, and the Blaire House Social Worker yesterday, and it looks like we're all on board for the next chapter of Bruce's story. I must share with all of you that a dear friend of mine suggested early on in Bruce's illness, that I consider purchasing guided imagery CDsby Belleruth Napartak to play for Bruce. I had heard of this woman before and the miracles that had been associated with her works. I bought the CD for comatose patients, but I wasn't good at putting it on Bruce with any consistency. However, once Bruce came back from his meningitis scare, I decided I wanted his mind at peace in case the end of his life was near and played it for him several times a week. When MR. Dr. S became ill, I again went online to find Belleruth's guided imagery for Cardiac Rehab as a gift for his recovery, and when I did, I found one by Belleruth Napartak for Stroke and purchased that as well. I had been playing this CD for Bruce as he dozes off to sleep 5-7 days a week for about 5 weeks when he began to show signs of awakening/movement/awareness. EVERY episode of crying/laughing with increased awareness that Bruce has had has been DURING the paying of this CD. It's at the point now, that I go in for a visit, put the CD on for Bruce and watch him come around-Sometimes it only takes 5 minutes: sometimes, I have to play it twice, but it always works! It is a miraculous thing to watch. Belleruth Napartak's expertise in guided imagery is truly a gift from God. With her, and all of our prayer angels out there, who knows where Bruce's story will take us (?). Please continue to keep Bruce in your prayers-He needs us. Blessings- Joyce 8/14/08 I have been holding off posting this fabulous,
breaking news about Bruce, because I was afraid I was imagining it all:
You know, wishful thinking. However, I am sufficiently convinced that
something amazing is going on with him, and I'm throwing it out there
for the power of all of our angels and the energy of the world wide web
to boost along: I have been reporting for a while now that Bruce has
taken to laughing quite a bit with his Blaire House girlfriends in the
mornings. Now I see that that behavior was the beginning of some
incredible neurological changes that we have been noticing since Bruce's
horrible bout with meningitis in April. About a month ago, the Blaire
house staff was telling me that they saw Bruce move his 8/9/08 August 9, 2007 8/5/08 I am so very happy to post that Bruce has been doing great. The nurses tell me that his c-diff cultures are all negative and he is actually OFF c-diff precautions-finally! . He has no infections, or signs of infections: No temps, no skin breakdown, and he is tolerating his new g-tube and feedings just fine. During the last few weeks of relatively good health, he has been seen moving his head and neck ever so slightly from side to side. We have also noticed that he has learned to complain a bit, making intentional groans when forced into a position he doesn't like. And, the nurses and caregivers have made it a habit to get Bruce laughing each morning while they get him dressed and up for the day. ( And, they have taken beautiful smiling pictures of him to prove it!) All of these are new behaviors, and I believe they are happening now because Bruce's body is, for the first time in a year, at peace enough to explore trying new things. We are planning to schedule his barium swallow test soon, and will know weather or not he can enjoy the taste of food again. It is a miracle that Bruce has been able to regain so much health after his near-death bout with meningitis in April. I can honestly say, for the first time, that he seems to be, by the grace of God, medically stable and out of the woods. And, with that blessing fresh in our minds, and with gratitude to our God and the powers of His mighty hand, I ask you to pray with me now for our lead angel, physician and friend, Dr. Sidhu, without whom, I would not be speaking of Bruce's miracles today. Dr. Sidhu underwent emergency quadruple by-pass surgery last week. He was flown to the exact same trauma center as Bruce, had his surgery in the same operating room as Bruce by the same surgeon, and now lies recovering in the same Cardiac ICU as Bruce did almost exactly one year ago. I went into Bruce's room today to find Mrs. Dr. Sidhu (She is also a physician) examining Bruce. She told me that her husband, as sick as he was, was worried about Bruce and asked her to come in and check on him. My heart broke for her. I knew exactly what she was going through as the wife of a very sick cardiac patient, and there she was tending to and confronted by her biggest fear-That her husband might have end up like mine. She looked at me with such empathy- And we hugged a knowing hug. There is no doubt that Bruce weighed heavy on both their minds this past week. We must work our prayer magic for Dr. Sidhu and his family-Now his angels are working overtime and need our support to carry on their good work. Please also continue to pray for Manny who has developed pneumonia and needs our good energy and intentions to get back on her feet. Also, prayers for Paula whose healing is slow but sure, and for Georgie's continued strength in her battle against breast cancer. You continue to be our strength, and I will never be able to express our gratitude for all the goodness you have sent our way. Blessings- Joyce 7/24/08 The weather in New England has been crazy with humidity, thunderstorms, near hurricane winds, peppered with the most beautiful summer days one could imagine. Through it all, Bruce stays cool and comfortable in his temp controlled room with purified air. Unfortunately, he hasn't been able to go outside much, but the summer is not over yet. And his caregivers take him out to the nurse's station to sit with them all the time when I can't be there. He hasn't had any fevers or infections for quite a long time now, and I credit that to his angel nurses and caregivers for their decision to remove his Foley catheter. They felt it would help his overall health to remove it, and they were right. We are so, so fortunate to have our Blaire House angels. Bruce's new g-tube is working well-The staff love it. And, I am told that the VA has approved the Barium Swallow test for Bruce. Moving all those mountains with your prayers still amazes me - But, your prayers moving the VA..........Well, that is something else entirely! I shouldn't be surprised by what your prayers and love and energy can do for Bruce. I have had to take a few more extra "home days" this summer than I usually do. I'm trying to sell quite a few of Bruce's "toys"-They are just too painful for me to see, and I cannot manage them by myself, anyway. I sold our canoe today, and cried as I watched it go down the driveway on the back of a truck, remembering all the canoeing we did in New Jersey, Florida, Alaska and Mass. The only consolation was that it went to a good home: a young, hardworking man and his girlfriend who were so very excited to have it. I still have fishing, hunting, camping and boating gear of all kinds to place in good homes. And, I will be trying to sell our pop-up camper which is fully loaded with every possible thing one could need for a weekend. We had it all ready to go camping on Friday August 10, 2007-The day after Bruce had his aneurism last year. We had worked so hard the days before to get it ready and have everything packed for an R&R weekend at the Cape. It's always difficult for me to look at that camper, and I've never opened it since we filled it. So whoever buys it, gets it all. So many little, painful details to tend to, but still I know God has a plan for Bruce and for me. I trust all will be right in His vision for our lives. You have been so faithful in your prayers and intentions for Bruce and for me. I ask God's blessings for you all every day- Joyce P.S. Please continue to pray for:
7/15/08 Well, Bruce was back from the VA that same day (Fri) and doing fine. I'm ashamed to say that my fears of that hospital were unfounded. We were attended to by compassionate and caring professionals, just as we have been throughout this process. As with all Bruce doings, however, there was an adventure waiting to happen with that g-tube. As it turned out, the Radiologist who saw Bruce first for prelim x-rays of his stomach, came out to tell me that he had no idea what kind of tube Bruce had in place- He had never seen one like it before. He was truly surprised! Anticipating that possibility (The GI consult Bruce had in Milford had also not seen one like it either) I had called Mass General procedure department just a few days earlier to ask that someone tell me what kind of tube it was and how it was anchored. The person there gave me a name and number to call if we had any problem (angel encounter). I passed that info on to the VA Doc who wisely called (angel encounter). His GI Doc was called in to see the tube in action under fluoroscope so that he would be able to remove it properly, and off Bruce went to have that procedure done. This GI Doc. is the head of the Endoscopy Dept for the entire Mass. VA system and was called in just to handle Bruce's tube change (angel encounter)- He fell in love with this g-tube because it has no balloon, but rather self-loops in the stomach to hold it in place and cannot come out unless intended to come out. The balloon type tubes are often pulled out by accident which causes nasty trauma, even bleeding, in the area-Not a good thing, making Bruce's tube rather an ingenious solution to the problem. The VA, being a teaching hospital, has all those folks -in-learning, and everyone of them had to come see this new fangled thing. And there you go- A celebrity is born at the VA. After all was said and done, and all the crowds had gone back to their duties, I noticed that there had been no other patients-just Bruce -since we had arrived. I asked our nurse (another angel) why. She told me that they had called in heads of Depts. and cleared the schedule in order to take care of Bruce and his procedure, because they knew it might be difficult. (angels at work behind the scenes) We had VIP care from the moment we stepped into that hospital. And, when I told them all that they had been angels for me, one doc said: : "No, You are the angel. Thank you for taking such good care of our veteran- He may be your husband, but he's our veteran." Thank you prayer angels-Thank YOU! -Joyce P.S. Your prayers for me and Bruce have been powerful beyond belief. I have a few friends who are in need of your prayers as well. These people are dear to me and have prayed so hard for Bruce this past year- Let us pray for healing and wellness for my friend Rosemari's daughter, Paula, who was injured in a motorcycle accident a short while ago. And for her family who is grateful that she was spared her life in that accident. Please also pray for Manny: That her heart condition will heal so that she can avoid surgery. Let's pray now.... (Amen) Bless you. 7/8/08 I have just received word that the VA has finally
scheduled a GI consultation for Bruce on Friday 7/11-Let's hope that is
a LUCKY 7/11, at the VA hospital in West Roxbury. I have to admit that I
have always been terrified about leading Bruce into the VA health
care system. I only agreed to do it this time so that they can get to
know him under a non-emergency situation, and of course I will be
with him. Still, if they decide to perform a g-tube change, it can
be dangerous, especially if they aren't familiar with the type of
tube Bruce has in. And they may just decide to do that on Friday.
Please pray with me, right now, that those who will be handling Bruce's
VA case and care on Friday, will do so with love and compassion
for him; --- I am happy to report that things are going smoothly with Bruce these days- I guess being 55 agrees with him. He seems to be comfortable in his air-conditioned room with all his Blaire House angels hovering over him. Bruce went outside on the patio for about an hour yesterday to visit with his Firth family (Mother, brother and family), and he seemed to enjoy being in the fresh air, listening to all the conversation going on around him. Right now, Bruce looks great.- just like his old self. His weight is stable and, other than that pesky diarrhea, he's the best he's been since his initial injury last August. We continue to wait for a barium swallow test to see if Bruce can eat food at all. And, we continue to wait for all the other VA requests, as well. I am relying on prayer to change these things, because telephone calls and conversations with our VA Social Worker, Brian Judge, have proven useless. We have moved mountains with prayer before and I know these things will resolve themselves just as they should. As always, we are so very grateful for your continued love and prayer-We are blessed. Blessings-Joyce 7/1/08 I'm sure many of you have been checking this site looking for news on Bruce. My son, Adam, who does all the postings for me, was taking a well deserved family vacation-And nothing gets posted without him, so let me catch you up: Bruce seems to be holding his own these days. The c-diff cultures come back positive and then negative and then positive again. He is symptomatic at the moment with terrible bouts of diarrhea, but he seems to be so used to it, it barely troubles him. The staff tell me that Bruce still weighs around 167-170- That's pretty good, so he must be getting enough nourishment, and that is the bottom line. For those who don't know, Bruce turned 55 years old today (6/30). I must thank all those who remembered him with cards and well wishes. We held a family party for him on Sunday 6/29 with Bruce's Mom, my son Adam, his family: Jen, Joshy, Jack and baby Alex, my mother, my siblings: Brothers Jeff and Jon (with wife Chrissy), sisters: Julie (with husband Tom), Janine and nieces Meredith and Morgan, Fr. Mac Murray, friends: Rev. Terry Andrews and Mary Ann Keefe, me and the Blaire House staff. We lit the candles, sang "Happy Birthday", and Joshy and Jack helped Grampa Bruce blow out the candles on his cake. Then, we had a typical Neal Family sing-a-long shindig with Bruce sitting right in the middle of it all. I don't know if he understood what was going on, but there is no way he could avoid feeling all the love around him. Fr. Mac and Rev. Terry both said prayers for Bruce and for us all-It was very touching and there were many tears. We miss him terribly. Family parties were Bruce's most favorite thing to do-I am so grateful that we had the opportunity to have one more. Thank you all for your support in getting this amazing man to this amazing day. We know who our angels are. Blessings and much love, Joyce 6/30/08 I have finally gotten some photos up here of Bruce through the years. Visit the photos page to view. 6/18/08 This has been another quiet week for Bruce. His
c-diff culture has come back positive (surprise, surprise...) and he is
back on antibiotics. The allergy symptoms come and go. On good days, I
am able to take him out for a brief walk and a bit of sunshine. The
nurses tell me that Bruce has been smiling for them every now and then.
We're having a nice, quiet run with his health, and I am grateful for
all the prayers that have made that possible. Unfortunately,
Bruce's crystal has not shown up. And, the VA is still not moving on all
the requests we have placed with them. Now, there 6/9/08 Things have been quiet with Bruce this past week. He
has a new air purifier that seems to be helping with the airborne
allergens, but he continues to look allergic at times and his diarrhea
has worsened to 4-5 times a day. Bruce's angel nurses are beginning to
think he may have developed a sensitivity to something in his tube
feedings, and I am thinking along those same lines. The Benedryl keeps
him comfortable, but he is pretty much room and bed bound-Not that that
has been a bad thing with the oppressive heat and humidity we have been
having. In fact, you can find missing staff members looking for
something to do in Bruce's room most of the time because the air quality
and temperature are so very comfortable in there. One of Bruce's nurses,
Tanya, called me this evening to tell me that she asked Bruce to smile
for her, and he did. She was so excited that she 6/1/08 Bruce is having a tough spring. We are thinking that it has got to be from allergies. Even though I have a huge HEPA allergy filter running in his room 24/7, his eyes were red and puffy- His nose and eyes watered constantly, and he looked miserable. He has a low grade temp that comes in and out of the picture-Not sure what that is all about, but the rest looked like classic allergy misery. One of his angel nurses, got an order to give him Benadryl at bedtime, and I don't think I've seen Bruce sleep so soundly in months. The puffiness went away and he was truly comfortable. The down side is that he didn't really roust awake again until the next evening when he was given another dose at bedtime. We're going to keep up the Benadryl for a while longer to see if we can get Bruce to a better place, Hopefully, the pollen situation will have calmed down enough for us to start tapering off the allergy meds, and get Bruce out into this glorious sunshine we've been having. Your prayers are welcome and needed, as always. Blessings- Joyce 5/27/08 When I saw Bruce on Memorial Day, he looked great. The staff did such a beautiful job dressing him in his patriotic red, white and blue shirt and his retired Coast Guard hat. I took him out in the sunshine for a bit and every time I looked over at him, he was looking at me. He tracked my movement and voice all day- We had a wonderful day together. Today, when I called the Blaire House staff, they told me that Bruce was not doing so well. He had a low fever last night and today. They said he looks stressed/sick, his chest is congested, and his eyes are red and bloodshot. We have been watching him for allergies, and today was a true test-It is hot, humid and the pollen count is high- Let's hope that's all it is. But, we still have that fever... I am a bit worried, so I'm leaning on all our prayer angels to pray Bruce well,...again. I so want the summer with him, so let's throw that out to the universe as well. In Spirit, all things are possible. Blessings- Joyce P.S.- My good and devoted son has not been able to post your messages on this site for quite a long while now. He just doesn't have the time to do that any more. But please know that he always forwards all your loving and kind well wishes to me. And, I relay every one of them to Bruce. Thank you for keeping us active in your prayers and thoughts. 5/22/08 As I predicted last update, Bruce has good days and bad days. We are beginning to think he might be having some difficulties with allergies. In New England this time of year, the pollen leaves a blanket of dust behind just like a thin layer of snow. Many folks are suffering from seasonal allergies. So, just on a whim, I started running a HEPA filter air cleaner in Bruce's room, and we've noticed a run of 2 "good" days that followed. Funny we hadn't considered that sooner, but Bruce never had allergies before his aneurysm. Sometimes I forget how much his metabolism has changed with all he has been through. He seems comfortable and is up in his chair most days. The staff at the Blaire House keeps him squeaky clean and looking very handsome. The nurses tell me that he does have a low grade fever that comes and goes. We're hoping and praying that it is just the c-diff infection, and not something worse. We try to get Bruce outside into the sunshine whenever possible. He seems to like that. Bruce receives Occupational Therapy on his hands 3 times a week which has lessened the contractures in his arms and fingers. This, in turn, lessens the pain from muscle spasms; always what we're looking to do. He receives Speech Therapy daily as well. Tina, his Speech Therapist, is trying to strengthen Bruce's tongue and his swallow so that we can prevent any further pneumonias, and just possibly...maybe... perhaps... someday he might be able to have a tiny bit of food every now and then just for fun. He's actually doing quite well with his exercises and we're planning a barium swallow soon to see just how much of the mouth substances makes it into his belly and how much stays in his throat, or goes into his lungs. (Some powerful praying here would be a good thing.) It's a quiet time for Bruce, and for me. I'm trying to organize our 20 or so boxes of family photos. Each day I bring one box into the Blaire House for my visit and Bruce and I go through them recalling the adventures of his life and all wonderful times we have had together. He does look at them- fixing his eyes for a short periods of time on certain images. I do believe that somewhere, in the quiet of his mind, some bit of Bruce is still there. Thank you for your kind words, thoughts and prayers. As always, they keep us plugging along knowing that God is in control and all is unfolding as it should. Blessings-Joyce 5/17/08 I went in to find Bruce awake and somewhat focused in his chair today. The staff tells me that it's the first day he has been awake and looking better in a week or so. I'm guessing that the antibiotics have kicked in and he feels some small amount of relief from the c- diff infection and all the related aches and pains. Or, could it be all those prayers and love pouring into him from his angels out there???) He is still changed, very quiet and slow to respond, but he also appears mostly comfortable, which is always a blessing. Yesterday I was seeing a Bruce that was "winding down- sort of getting ready", but today, not so much so.... I think that might be how it's going to be from now on: good and bad days: bright days and sleeping days: quiet days and restless days..... So is life with Bruce. Still, I treasure today and I am thankful for it. After discussing Bruce's current condition with family, I have come to the conclusion that no one can predict what will happen or how we will deal with it. I do know that Bruce has surrounded himself with people who have deep compassion for him and nothing but his best interest at heart always. I am confident that, when the time comes, that with love and respect for the dignity of his life, we will know what to do. I know that our thoughts and motivation will be guided by God and by Bruce, and all will be as it should be. That being decided, I'll worry about the next crisis when it gets here-Until than, Bruce and I are going to live every day. Blessings- Joyce 5/15/08 Unfortunately, Bruce is not doing so well these days.
The c-diff cultures are finally coming back positive, and the infection
is unmerciful on Bruce's intestines, immune system and his skin. The
past few days he has been sleeping so soundly that it has been difficult
to arouse him. We have all noticed that Bruce was changed by the
meningitis episode several weeks ago. He is quiet, he doesn't focus much
on his surroundings, and he seems to have lost his edge. I sat watching
him sleep yesterday and I could see that his body is so very exhausted
after 8 months of one horrible fight after another. It seems that he
cannot get even a 3 week rest from infections. Dr. Sidhu, myself and our
family, and Bruce's caregivers are at a place where we no longer know
what to do-What is the right thing for Bruce? What does he want us
to do? How much more should we put him through? 5/14/08 I saw Bruce last evening. He looked good, but a tad
uncomfortable. The nurses tell me that he has diarrhea again and
it's very uncomfortable- probably burning his skin. Although his c-diff
cultures have come back negative, Bruce shows all the clinical signs of
it, so Dr. Sidhu started him on the appropriate antibiotic just today.
The staff is keeping a close eye on Bruce's temperature (so far it's
been fine), just incase it decides to shoot up again. So keep those
prayers going that the antibiotic will continue to work well for him, as
it has in the past. These days have been so nice to come in and see
Bruce sitting in his chair all dressed, shaved and showered-The staff
tells me that he LOVES being in the shower. He just lays back, closes
his eyes and relaxes when he feels the water on his body. No small
wonder: He's been in water almost every day of his life from 1971 to
2004, and is as at home under the water as he is above it. It is
probably the most familiar and comforting sensation of them all. They
tell me that they shower Bruce every day they possibly can because he
seems to enjoy it so. (They really do spoil him!). They also tell me
that Bruce's g-tube is getting finicky. It's 7 months old, so
probably needs to be replaced. We're working on plans to get Bruce to
the VA in West Roxbury one of these 5/8/08 I've come to the conclusion that Bruce is like the New England weather: If you don't like it now, wait 5 minutes. That fever from a few days ago is nowhere to be seen-In fact, Bruce's temp last night was a tad lower than normal. And, his latest culture came back NEGATIVE for c-diff (That 3 negatives in a row!) Go figure! When I pulled up to the Blaire House today, there was Bruce, sitting out on the front patio with the other residents soaking up the glorious day. He looked great with a glow of sun on his face. I was so pleased to see that the staff wasn't afraid to include him in their activities. He is a lot of work and requires constant monitoring, but they just kept him close and carried on. Once Bruce hit his bed, he was sound asleep (And I mean SLEEP-with snoring and everything) in 5 minutes.- No doubt from his busy day. I know this is not the way I expected our future to be, but I am deeply moved and eternally grateful for all the yesterdays, today and hopefully, tomorrows. Blessings-Joyce 5/6/08 Well, it was a good run while it lasted. Bruce had a fever yesterday morning which means that something is brewing-We're thinking it could be that pesky c-diff , but the reality is that it could be anything, It's wait and see. In spite of it all, Bruce is looking good, and his awareness seems to be consistent ,which is always a good sign and a real treat for those of us who interact with him every day. Unfortunately, his tube feeding rate had to be lowered in order not to overwhelm his struggling colon, but his weight is quite good, so we have a little room to play here. Please don't take a day off from your prayers for Bruce, for me and for our families. We have all been through so much, but we remain supportive to each other and always hopeful for the best outcome for Bruce. Your love and prayers have played no small part in that. Our prayer angels , extended family, and dear friends have been our constant companion, and I welcome each and every day with humility and gratitude for having each one of you in my life. Blessings- Joyce 5/5/08 Bruce continues to do well. He seems to be tolerating
his g-tube feeding schedule and new lower med regimen pretty well. He
seems comfortable and relaxed without much need for additional pain or
comfort medications. As of Saturday, diarrhea has reared it's ugly head
once again. Cultures have been sent out, but we already suspect another
c-diff infection from all of the powerful antibiotics Bruce received
with the meningitis. Actually, we were all pretty surprised he hadn't
shown symptoms of it by now. The nurses tell me that c-dif burns when it
touches the skin - making sitting up in his super wheelchair a major
pain in the rump. I don't want to wish that upon Bruce again, and if it
isn't a c-diff infection, that would be soooo 5/1/08 Bruce is doing very well since his return to Blaire House from that last, horrible, series of infections. At the moment, he is clear of ALL infections and off of antibiotics for the first time in many months. Dr. Sidhu (Ran the entire Boston marathon in 5 hours 22 minutes-First time runner at age 60!) pulled out his central line yesterday, so now he has only a g-tube in place in his abdomen, and that's it! His g-tube feedings have been scheduled 6 hours on and 3 hours off and at good rate of 70cc/hour, which is more than Bruce has been able tolerate since his Spaulding days last fall. He can go back to having daily showers and nice long walks out in the sunshine, since he is not hooked up to a machine for 3 hours during the day. And, Bruce looks great. He is bright as a penny, looking right at who ever is speaking to him and tracking noises with his eyes. He smirks and smiles occasionally, and looks peaceful and comfortable most of the time. His Blaire House angels dote over him all day long. I went in yesterday to find him sitting right IN the nurses station with the nurses like he owned the place! ( He is sooooo spoiled!). They are wonderful to him there-We are so very fortunate to have found such a loving, caring "family" to take care of Bruce. It's his home now, and he is happy there, but I miss him terribly in our home- Especially now that it is spring with all the things he so loved to do happening all around us. Some moments glorious, others still painful-We are all adjusting-Each of us in our own way. Your love and many, many prayers keep us going. Blessings- Joyce 4/20/07 I am so very pleased to report that Bruce was
discharged from Milford Regional Hospital on Saturday, and is happily
settled back into his old room at The Blaire House. The staff there gave
him a warm and loving welcome home, as only they can do. They had him
washed, shaved dressed and sitting up in his "Rad" wheelchair today,
looking as handsome as ever. I am still so amazed at how quickly he has
recovered form such a horrible illness. The hospital staff was wonderful
(more angles), but I'm so relieved to have him back with the folks who
know how to "read" Bruce as well as I do (Maybe better.) They don't need
me to tell them when he is stressed or in pain-They know. And, they get
right on it- Much less stressful for me! Bruce is now on only one
antibiotic for just a few more days, then he can come off of that. For
the first time in 6 months, he is NOT on any precautions as his
meningitis was never contagious, and his respiratory infection has been
treated with antibiotics for 11 days, AND his inpatient c-diff culture
came back negative! (Go figure!) So, for the first time in...forever,
there are no signs on his door, no gowns and masks to wear...Yeah!
Unfortunately, Bruce didn't move much during his 10 day hospital stay,
so he is badly contracted and, once again, we are dealing with the pain
associated with that. As of Monday, he will be back on his PT and OT
schedule for stretching him out and getting him back to a comfortable
place. 4/17/08 Dr. Sidhu called this morning to report that he was very pleased with Bruce's progress and expects to discharge him from the hospital either Friday or Saturday. The staff is still tweaking the tube feedings, but it's all going well. It is nothing short of a miracle to have Bruce's condition turned around in this short length of time. I am so grateful for every prayer , every intention, every loving thought sent our way. I will keep the updates coming so that you all can read about and enjoy your (latest) miracle as much as possible. Blessings- Joyce 4/15/08 Bruce is doing very well. His fevers have been gone for almost 48 hours and he looks pretty good considering what he has been through these past few days. He is awake, bright and blinking responses for me and the staff. He still has occasional chest/lung pain, but that comes with the turf with the type of pneumonia he has- It gets better every day. Dr. Sidhu is keeping him in Milford Regional Hospital a bit longer to work out some nutrition issues and to get Bruce's meds to something more workable for the nursing home staff. Other than that, "He's back." I feel as though I won the lottery today. Let's celebrate today as a gift, because that is exactly what it is: a wonderful, beautiful, glorious gift of another day with Bruce in our lives! I am so grateful to all of you for being there with your love, thoughts and prayers when we really need you- It changes the entire energy of things for Bruce and for me. I am with you all each and every day in my thoughts and prayers of gratitude. I think Bruce is officially out-of-the woods, but I'll keep posting updates until he's back "home". Blessings- Joyce 4/13/08 Bruce continues to go in the right direction. The fever is still there, but is not as big of an issue and can be controlled. Dr. Sidhu is pleased (amazed, even) with his progress given his condition. Bruce is awake again and responding to Joyce more. Bruce will be at Milford Regional Hospital for a while longer while they continue to work to get him stable again. Keep your prayers going - they're working! -Adam 4/11/08 You will never know the power of your prayers. Once again, they have materialized the impossible. As you know, Bruce has been so very, very sick. In his very fragile condition, It would have been difficult enough to treat him for just the urinary tract infection. Couple that with a pneumonia, and it would have been a medical challenge. Add to that pneumonia a strep bacteria and you've just made a very bad situation even worse. Then, over-run Bruce's lungs with that infection, and have it spill into his blood and you have a very serious condition-sepsis- that would be extremely dangerous even for an otherwise healthy individual. After all that, have that same bacterial infection invade the spinal fluid and brain, and you have a near impossible medical situation-Too many infections in a very compromised body. That is where we were Wednesday and Thursday of this past week. I have not been able to leave Bruce's bedside for fear that he would die. Dr. Sidhu cancelled all his appointments and stayed within a 10 minute radius of the hospital for 3 days. On Thursday, he gave it to me straight that we were on a minute to minute basis with Bruce. His fever bounced around 101- 105 degrees and on Wednesday afternoon Bruce began to seize. It went on for hours. The Infectious Disease team suspected meningitis and performed a lumbar puncture where they found the spinal fluid cloudy. Cultures showed a non-contagious meningitis. Bruce was unresponsive and was pretty much in a vegetative state at this time- (Thank God). His white count was over 2000 which surely indicated that Bruce's brain was encased in puss. His spinal fluid was thickening which would eventually lead to increased inter-cranial pressure which could only lead to system failures- A near impossible situation to turn around once it has begun-That is the domino effect which kills so many healthy people when they contract meningitis. Bruce was there-so completely there,..... until this morning. I stayed in his room overnight, and this morning I heard him making noise. I went to his bed and called his name and he opened his eyes and looked at me. His temp has stayed 98-99 all night and most of the today. He has been awake and coughing and making "Bruce noises" all day. No one on staff at Milford Regional could believe it when they saw him this morning. Dr. Sidhu was thrilled, as was the entire Neuro team who pulled him through the day prior. I know we are not out of the woods yet, but we're headed in the right direction. And I know from where this miracle came. Please keep him in your heart and prayers. He still has a long way to go before we can rest easy, but I know he is in good hands and in God's hands. I will try to post daily updates until it's smooth sailing again. I am humbled with gratitude for all of you and for today. Blessings- Joyce 4/10/08 Bruce had more tests today, including a lumbar puncture. This test revealed that he has non-infectious Bacterial Meningitis. He had a strep pneumonia blood infection and it is suspected that this infected his spinal fluid. His fever continues to go up high, but is controlled better than yesterday. For you medical types, his white blood cell count is over 2,000. The doctors know that there is pus surrounding his brain which is a concern. But, he is on the appropriate antibiotics at this time and we are hoping to see improvement in the next couple for days. They are monitoring him closely for any increase in intracranial pressure. His other vital signs are good. He is unresponsive and has been since the seizures, and it's unclear whether it's the seizures, high fever, medications or all of the above that is causing this. Bruce is very sick, but we are very hopeful and we never stop praying for him. We're anticipating his amazing constitution will prevail, and allow him to return to the Blaire House. Bruce got a visit from our pastor, Father Mac, from the church we go to. (Father Mac baptized Alex!) We know people are praying for him all over the country. Please keep him in your prayers. -Adam 4/9/08 Bruce was admitted to Milford Regional Hospital
yesterday with a high fever (105 degrees). He has a urinary tract
infection which was treated right away with antibiotics, however, his
fever hasn't gone down much over night. This morning's blood cultures
show a bacterial infection of unknown origin. Dr. Sidhu has many tests
scheduled today to determine the source of infection. To complicate
thing a a bit: Yesterday, in their haste to get Bruce on the ambulance,
the Blaire House staff neglected to flush his g-tube after unhooking his
feeding. By the time morning meds were due in the ER, the liquid feeding
remaining in the tube had hardened into cement. As of last night, the
staff was not able to use Bruce's g-tube at all. It looks 3/29/08 I am sorry for the long periods of no news on Bruce, but as explained before-That is good news. Bruce had been quiet and comfortable these past few weeks. He had 2 negative cultures for that c-dif intestinal infection and we were all hopeful; however, the 3rd culture came back positive. That means that Bruce continues to harbor the bacteria and will continue on antibiotics. Unfortunately, he still has diarrhea which complicates things, but we've been working that out for several months now and will just carry on. A while back, Bruce was shooting a few high temps.- Dr. Sidhu removed his PIC line just to make certain that there was no infection there. It has been out for almost 2 weeks now which means that Bruce is no longer getting the TPN nutrition. He is only getting a slow drip into his stomach tube. He seems to be doing well with it, but does look like he is losing weight. The nurses have ordered blood work to make sure all is well, and I'm sure changes will be made if needed. To look at him, Bruce looks just fine. He sits up every day in his new, really cool, tilt wheelchair. This one has a gel cushion which is very easy on the butt, and Bruce seems to like it. His meds have been reworked to support his comfort. His anti-spasmodic drug has been increased and he is much, much, more comfortable all day long. Without the PIC line in his arm, Bruce can wear his regular street clothes; And when not preoccupied with pain, he has bright moments when you'd swear that he's going to turn his head and start shooting orders at us all!. I am on my way to a 2 day workshop in CT. titled "The Secret of Miracles" by Denise Lynn. Boy, do I have a challenge for them! Regardless of the outcome, I will never stop praying for a miracle for Bruce. I know you won't either. Please pray for us both this weekend. Blessings- Joyce 3/13/08 No news has been good news. I have been riding a wave
of relative quiet with Bruce's health since his last discharge from
Milford Hospital, but there has been a tsunami with just about
everything else! Bruce's wheelchair is complete, assembled and ready to
deliver, but ....has not arrived-Seems that the wheelchair company
didn't get all the info they should have way back when it was ordered
(October???) and as of Monday, didn't think they had BCBS payment for
it. After hours on the phone with BCBS, TRICARE, VA and back to BCBS, it
seems that the wheelchair company misunderstood and everything IS paid
for-No problem at all!, Sorry for the confusion....-That's 4+ hours I'll
never have back. I'm pleased to say that most of Bruce's financial
compensations have been paid, however, 3 of the 4 federal agencies
involved have limitations on the money and require yearly
accounting...And, no, I cannot compensate myself for the hundreds of
hours I will have invested in the process. I am overwhelmed with the
bookkeeping involved to the point where I have not touched the money
because I don't know how many checking accounts I need to open for
Bruce, or what can be used for what. I will likely need to hire someone
to manage it all for me....who knows when that will happen. The Blaire
House, although filled with angels, and loving caretakers, has been
keeping me on my toes in other areas. Bruce is so horribly contracted, I
was concerned about him fitting into his new chair, so I inquired about
how his PT was going.. I found out that Bruce has no been receiving
therapies, AT ALL! I don't know when they were all stopped, but by the
looks of him, it was a good long time ago. I also noticed that
Bruce's soft arm splints and his foot splints have not been used. I
called in the Nursing Director and pointed all these things out, and
gave her a list of things I wanted done immediately which included all
therapies resumed, even if I have to private pay for them. I also asked
for private duty nursing for Bruce in the evening and at night. She
called me today to say that she was working on things, but I really
didn't get any hard and fast answers. This is where I need your prayers,
my friends- Lots of feet dragging going on and care for Bruce's body is
getting lost in the shuffle. Please pray right now for those in control
to make Bruce a priority and get busy getting him what he needs. As of
this evening, Bruce has developed an elevated temp of 101. It is an
occasion such as this where a private duty attendant would bring me
untold peace of mind. Bruce still has the PCC line which is giving
him the TPN (Nutrition). His g-tube is being used-very slowly-
with a more readily absorbed feeding formula. Dr. Sidhu started Bruce on
a cholesterol med in order to control the diarrhea, and bind him up a
bit.-That has worked better than anyone had hoped. Aside for this new
fever, things had been going smoothly. But with all the other stresses,
I'm feeling that my energy is low these days. I have been trying to take
more time for myself, but that is a daily challenge. Please renew your
efforts to lift Bruce and I up in your prayers. Sometimes I feel so
exhausted and then , out of nowhere, a breath of crisp, fresh air fills
me up-And, I know someone had just lifted me in prayer. I am so grateful
for those "shots" of energy, and I need them more than ever. Bruce still
needs you too. I don't know what we would do without the support of our
friends and family-I am so very grateful 2/28/08 Bruce is back at the Blaire House after a week long stay at Milford Hospital. I am pleased to report that his fever has been down for several days and he is comfortable, for the most part. It seems that the c-diff infection, along with a bacterial infection in the blood (probably from the PICC line) was the culprit. Dr. Sidhu kept Bruce in-patient because he wanted to give his intestines a rest and give the antibiotics a few days to work before inserting another PICC line, and restarting tube feedings through the g-tube. As of Tuesday night, Bruce was, once again, receiving nutrition through his PICC line and through the g-tube. So far, Bruce seems to be tolerating everything pretty well. As soon as he hit his bed at the Blaire House, he fell fast asleep-I'm sure he knew he was back in a familiar place. While Bruce was hospitalized at MRH, I received a call that his new, stealth-bomber, custom made wheelchair was ready for delivery, and I can imagine that he is itching to try it out. He has been in bed for a week. He hates not being able to sit up for a least a few hours every day. It will be nice to have our routine back. Our stay at MRH was eventful ( I mean other than the ups and downs of Bruce's health issues..) One of Bruce's CNAs was daughter-in-law to a very, very old and dear friend of my mother's from their high school days. Our families were close and spent a lot of time together back in the 60's. Somewhere along the line, we all lost touch. We exchanged numbers and my mother was thrilled to be back in touch with her old friend. In addition to that, the unit secretary was married to a man who served with Bruce in the Coast Guard on the U.S.S. BIBB.
2/21/08 Quick update on Bruce. He was admitted to Milford Regional Hospital last night. His fever is lower - about 100 or so, and more controlled. He was able to get some sleep. They have confirmed that he is septic, and then believe that the source of the infection is his PICC line, which has been providing him with nutrition. They are goign to remove it for 24 hours, and give Bruce antibiotics to hopefully give him soem help in fighting the infection. However, without the PICC line in place, he will not be receiving any nutrition, so it's soemthing they will watch very closely. Dr. Sidhu has been there the whole time and is firmly in control of his care. However, the VA has been wanting Bruce transferred to their facility in West Roxbury. No one thinks this is a good idea, but it is in accordance with VA policy, so there has been some discussions abuot this since the VA is paying the bills. Thankfully, the VA at West Roxbury currently has no beds available, so that has kept Bruce from travelling. Dr. Sidhu hopes that Bruce will improve enough to go back to Blaire House before a bed opens up at West Roxbury to avoid the travel. Bruce continues to fight as always and your prayers and energy are helping him through his struggles every step of the way. Please continue to keep him in your thoughts. Updates will as always be posted when the situation warrants. Remember that "no news is good news", so when there's no update, that means there isn't anything to report - which is generally good!! 2/20/08 February has been an emotional month for us-Believe
it or not, February 7 marked the 6 month milestone of Bruce's aneurysm;
February 13 was our 16th anniversary, then of course, the following day
was Valentine's Day- What would have and should have been 2 days of fun
and romance with my sweetheart, was more a struggle to avoid painful
memories and teary eyes. After 6 months, I find myself missing Bruce
very much, and in quiet moments, trying to recall the sound of his
voice. And, during this month, Bruce has had a number of infections with
spiking fevers that have kept him just a hair from being admitted to
Milford Hospital. And, the fact that someone had taken a personal item
from Bruce's room only added one more thing to the list. But, somehow,
all of your prayers and uplifting thoughts have gotten us through-And
gotten us through it all... very well. Bruce's fever seems to have
evaporated these past few days. His diarrhea has slowed down for no
apparent reason. And then, out of nowhere, the missing fetish pouch
complete with bear and mementos of our life together miraculously
appeared on one of the counters at the Blaire House this very morning!
No doubt, someone had a pang of guilt and returned it in such a way as
to remain anonymous. That is the power of prayer, and I'm getting to the
point where I'm not even surprised by it any more. (The nurses are a bit
spooked by it all saying that the fetish must have been really powerful
to get someone to return it.!) This is one amazing journey we are on, my
friends. Please stay with us in your daily thoughts and prayers. Bruce
needs us more than ever. Remember, in God all things are possible.
Believe. Blessings- Joyce Blessings- Joyce 2/7/08 Bruce did amazing well with his PICC line procedure. We zoomed in and out of Milford Hospital in less than an hour. I requested their best IV starter and they sent in a crack shot nurse who got it on the first try! (Again those nurses saving lives!!) Since then, Bruce seems to be making improvement . The nurses tell me that he has gained 9 pounds already, and he is looking so much better. Dr. Sidhu also started Bruce on G-tube feedings as well, but with a very, very, very slow infusion. He still has diarrhea, but not so much to cause concern. It seems that the c-diff has wreaked havoc on Bruce's intestines. He is back on antibiotics-Let's hope they continue to work. He seems to be so much more comfortable as well. He is pretty much contracted in his arms and legs, and he does a lot of complaining when we try to move them, but doesn't have the jerky muscle spasms that used to cause him so much pain. He seems pretty comfortable most of the time and is able to sit up in his chair for several hours a day. Unfortunately, he is hooked up to iv poles and tube feeding poles, so I can't push him around in his million dollar wheel chair like I used to do. Hopefully, he'll be off his tether by the time the weather gets nice, and I'll be able to take him outside on the beautiful patios at the Blaire House. This week, and for the first time since August, a bad person has entered our lives: With some of the money friends have given me for Bruce, I bought him a beautiful , hand carved, Zuni Indian bear fetish which is used for protection. The bear was an expensive, one-of-a-kind, black onyx, carved figure with a red coral inlay heart line. I thought it was perfect for Bruce-He is like a bear and his heart changed his life in so many ways. On the worst snow day of the year, I drove to Winchendon to purchase a buckskin pouch which I embellished with crystals, whale bones, cedar bark, and antler buttons I had saved from our life in Sitka, Alaska: a seed from the Kapok tree we lived near in Florida; and a shell from our beach in Cape May, New Jersey. By the time I had completed the pouch, I have to admit, it was truly beautiful with bits of our life together all over it. I had it on my alter for a while and said many prayers over it for Bruce's healing. I hung it next to his bed on Saturday at 5:50pm just before I left. When I arrived Sunday at 5:30pm to watch the Super Bowl with Bruce, it was gone. We have all looked everywhere for it, but it is nowhere to be found. It makes me sick to my stomach to think someone could come into Bruce's room, in the condition he is in, and take one of the few personal items he has. The Blaire staff is sick about it too. Everyone has been questioned, but there is nothing more we can do. I hope you will join me to pray for the person who took it; that they will see the need to return it to Bruce's room, or that they need it more than he does. I have been able to "let go" of many things on this journey, but this was very difficult for me, and I have had to work at accepting the loss. As difficult as it may be to understand, that fetish must have had bad energy about it in order for it to attract and tempt someone into taking it. Perhaps that bad energy was harmful to Bruce and needed to be removed from him. God works in mysterious ways to protect us-Many of which we just don't understand. I choose to trust God's hand in all matters. And, I pray that the person who took that fetish from Bruce had their needs met. In the meanwhile, I am going to enjoy Bruce's company and remind him of every loving thing, and every loving person that is in his life. Blessings-Joyce 1/30/08 Don't forget Bruce in your prayers again today- In fact, say one right now for him, then read on. I was able to stop that horrible situation yesterday and get everyone on board for a day trip to Milford Hospital for a PIC line attempt. Dr. Sidhu does not think Bruce's veins are good enough for this procedure, and he is in favor of a central line. A central line is more dangerous because it goes directly into the heart, and Milford Hospital does not do them, so if this happens, Dr. Sidhu and a surgeon will do it right in Bruce's bed at Blaire House. An infection in a PIC line means you pull it out-An infection in a central line is so not good, I don't want to think about it. i We have our work cut out for us today-We simply have to pray that Bruce's veins are good enough for the PIC line procedure at 1:00pm today, and that he sail through it comfortably and safely, and be delivered back to the Blair House and all who love him. I have a good feeling about this, and I KNOW our prayers are working because we had our first miracle with the VA yesterday. Read on..... Within an hour of posting yesterday's update asking you all to pray that Bruce's case land in the hands of an angel, I received a call from the VA person handling the financial piece of Bruce's case. She was very nice and explained to me that she needed to come out to the Blaire House and personally witness Bruce's condition in order to move forward on his claim for increased compensation due to a service related injury. (Now, let's just forget that Bruce has been visited by VA nurses twice a month, and that the VA department has already in it's hands documentation from UMASS, Spaulding, Mass General, Milford Hospital, Dr. Tam. Dr. Lee, Dr. Sidhu, Bruce's family physician, AND his entire military medical record from 1971!.......Our tax dollars at work , folks!!!). I'll admit that I was thinking...."Here we go again..." But, In the corse of conversation with this very nice lady, she mentioned that she had been a social worker with the VA. For those of you who do not know, my daughter-in- law, Jennifer, was also a SW with the VA up until this past July , and what we discovered in this very brief conversation is that they had worked together and were good friends. Needless to say, this lovely lady put Bruce's case at the top of the pile, and assured me that it would be completed that day. She also shared with me that the VA had acknowledged me as Bruce's guardian so that I can manage his VA affairs (A HUGE hurtle), and that he HAD been determined 100% service related disabled by the medical folks, and ,pending her visit, once she stamps the paperwork, Bruce will receive compensation from the VA for his injury-How amazing is that???! She told me that she had just picked up Bruce's case that very morning, because no one else had time to do it and she felt so badly for Bruce after reading his history. And, later,Jennifer told me that she had no idea this woman had left the VA hospital and was working at the VA Feudiciary Department. THAT, my friends is the power of prayer! Bruce's case managed to find an angel in the guardianship piece, and the financial piece of the VA puzzle. We are still looking for the angel for the medical piece, and I know that will happen soon. Help me put that power of prayer to work right now for Bruce ( and his amazing veins!). I will post an update tomorrow to let you all know how things went today. Your prayers/thoughts/love make it all happen. We love you all- Joyce SUPPLEMENTAL UPDATE: The PIC line is in and Bruce is doing well. 1/29/08 It is day 5 now that Bruce is without tube feedings. Unfortunately, he is still having episodes of oozing diarrhea. Dr. Sidhu will not restart nutrition via the G tub, as Bruce's system can't absorb it anyway. Apparently there were some plans made late last night and without my knowledge to transport Bruce to the VA hospital in West Roxbury to put in a (TPN) central line. Fortunately, Bruce's nurse called me to tell me that he would be leaving via ambulance within the hour, which gave me the opportunity to put a stop to the entire thing. (What would we do without those fantastic nurses???) I found myself angry, really angry, for the first time since this entire ordeal started in August. I am flabbergasted that anyone who has laid eyes on Bruce could think he would be able to tolerate such a thing in his present condition! And, to add to the confusion, I was at Blaire House yesterday until 3pm and spoke with the VA Nurse Practitioner who come out to see Bruce-I told her I would not, under any circumstances, allow him to be transported any great distance because of his fragile and weakened condition, and that Dr. Sidhu and I both were reluctant to even send him the 5 minute ride to Milford Hospital right down the road. She agreed that it "might not be such a good idea and probably could be considered an emergency that could be treated locally given Bruce's condition". I have no idea what happened after I left, but I have been putting out fires all morning. I have had a fear that once Blue Cross was no longer our primary and the VA was calling the shots, that we'd have nothing but chaos-And I was right. This is where I really need my angels today: The VA is a huge institution with very powerful energy, much of it, unfortunately, is not as easily negotiated, or is as focused on compassion for the person as it should be. The VA does employ wonderful, compassionate and caring folks, but they are often lost in chaos and bureaucracy. It will take a lot of our energy/prayer/positive thoughts/intentions to get Bruce's case into kind and loving hands within the VA system. We can do it- We have moved mountains for Bruce and we'll do it again. In the meanwhile, the Blaire Social Worker (another blessed bunch of folks) is working the VA over to have Bruce's procedure done locally, and if they do not budge, she's working on accessing our Blue Cross plan to cover the expense at Milford Hospital. Hopefully, it will all be worked out today, and Bruce will be where he needs to be soon, getting that IV line put in and getting the nutrition he needs to stay with us. In spite of all the obstacles, Bruce, although thin and easily tired, still looks good-His cheeks are pink, his eyes are bright blue and he seems comfortable and quiet. When he is awake, I read to him and take him for walks. My son, Adam, actually got a smile out of him yesterday. Bruce is one amazing man!- His constitution and will to live are beyond my understanding, but as long as he wants to fight, we will all be there fighting with him. Please, pray for the folks at the VA-pray that every VA person whose intentions are for Bruce, do so with clarity, love and compassion -Pray for my continued strength, and please, continue your loving prayers that Bruce shall live out his story, however he and God have decided it should be. Love you all- Joyce 1/27/08 Up until this past week, no news has been good news. In the absence of my updates, I have been spending time just being with Bruce-Reading to him and walking him around, just spending time with him. There have been a few snowbound days in the house, and I managed to squeeze a birthday in there somewhere, but most of the time has been just quiet time for me and Bruce. But now, Bruce needs all of his angels working for him again. Since his last discharge from Milford hospital on 12/24, we have been riding an unusually long wave of relative quiet with Bruce's general health. Dare I say that I think he even took a few steps toward better health by gaining a little weight and after 2 negative cultures for that plaguing c-diff intestinal infection, he actually came off of antibiotics for a whole 2 weeks. Since 1/20 however, the c-diff has returned with a vengeance, along with a urinary tract infection, to boot. At present, Bruce's colon does not seem to be absorbing any nutrition with almost pure tube feeding coming out of him as fast as it goes in. Dr. Sidhu, as with all of the Blaire House staff, is at a loss of what to do for him. By treating the URI, they make the c-dif worse; And, by not treating it, there is a threat of sepsis (being over-run by infection). The Dr. has opted not to send Bruce to Milford Hospital again, but rather to keep him in a familiar place with those who know him best. He has stopped Bruce's feedings for 72 hours to give his intestines a break. Bruce has been getting fluids via his feeding tube, and I have to say that Bruce is looking much more comfortable and as though he feels better, but he is getting little or no nutrition during this time. That can't go on much longer or his body won't have the energy to keep fighting these bacteria. There is always the option of IV fluids/nutrition, and Dr. Sidhu will do that if absolutely necessary, but that is a likely place for another infection- to be avoided if possible. We are in a "Catch 22"; "Dammed if you do and damned if you don't" situation right now. I knew of this possibility all along-This is the course for people with Bruce's degree of disability; but Bruce is a fighter, for sure, with a unceasing drive to live, so we've come to the place when It's time for a miracle. Pray for that miracle. Please keep Bruce in your daily intentions-Pray for him, send him your positive thoughts and energy, light a candle for him-do anything that sends your blessing to him. Please pray for the diarrhea to stop and for Bruce's body to take the nourishment it needs to heal. Remember, in spirit, anything is possible. I receive a publication called "Guideposts". It's a collection of spiritual stories of hope and God's love. This month's front cover read "Expect a Miracle"........ and so I will. Blessings- Joyce 1/1/08 We have received so many loving Christmas cards, wishes and prayers form you all-Our prayer Angels. I hope you received our photograph of Bruce and me in front of the Blaire House Christmas tree. Perhaps my tech-son, Adam, will perform some of his computer wizardry and put the picture on this site somewhere for those whom I missed this year. I could never express my gratitude for your love and support . You all have brought such love and grace to an otherwise horrible story in our lives. To catch you all up, Bruce returned to the Blaire House from Milford Hospital on Christmas Eve day about noon time. His daughter Chanel, grandson Devin and I met him at Blaire and helped get him settled in. It was a relief to see him looking very good with nice pink coloring and bright blue eyes. I think the general consensus is that he had a URI with a touch of pneumonia - all of which seem to be resolving. Dr, Sidhu ran many tests while Bruce was in the hospital and made major adjustments to his medications, cutting the number of meds probably in half. The Doc hopes that by doing this, Bruce might come to a more heightened awareness. The Blaire staff seems to think that is happening. They report crying episodes and attempts at movement, but, honestly, I am not seeing any of this in my daily visits. I see tearing eyes which Bruce has had on and off for many months, and I see increased muscle tone/spasticity due to increased bed time and decreased physical therapy. It's difficult for me to say weather Bruce is "better" or not. I can only say that he is "different". It is a difficult change for me, but it doesn't appear to be a bad thing for Bruce. From my perspective, Bruce is not as bright and "with-it" as he was in Spaulding. He doesn't get that same constant stimulation: people in the room, talking, questions, in and out of bed, going here and there, etc. that he had in Boston. It seems that stimulation kept him more focused. At Blaire House, he has more quiet time: some days he is in bed all day, some days he is out of bed once a day depending upon his c-diff diarrhea issues. His meds have been cut down, so there aren't as many nursing visits and conversations going on around him. He receives PT and I'm not sure about the other therapies, but other than that, he does not have many folks making demands and challenging him to try new things every 5 minutes. I'm really not totally sure what he gets now that things have been re-worked. I have requested a family meeting with the Blaire staff to find out exactly what Bruce is on these days, and get back into the loop with his new regimen. I'll know more than. But, please know that the entire Blaire staff is so very wonderful and kind and compassionate to him. They love Bruce and they cry when he cries. But, one has to understand that it is a Skilled Nursing Facility not a rehab hospital. The staffing, equipment and expectations are different now. Change is very difficult. There are painful moments when I realize that the Blaire House is now Bruce's home, and there will come a day when they all know his care better than I do. This holiday was a difficult one as I knew it would be. We so missed Bruce's presence (and his appetite) at our family celebrations. But, we admirably carried on as we know he would want. We had a toast for him at the Neal Christmas Eve bash (Bruce's most anticipated and favorite party of the year) and remembered him with many Bruce-stories (mostly about how much that man could eat!) The next day, Chanel, Devin, Bruce's brother's family, Glen, Fran, and our nieces, Alanna and Cassidy, along with Bruce's Mom, and me packed up Christmas day goodies and gifts and trucked them all to Bruce's bedside at Blaire House for our traditional Firth Christmas Day together. Bruce slept while we ate, opened gifts, played games and shared moments of joy together. As difficult as it has been, I thanked God for every moment we had with him. No matter what, I will never stop praying for a miracle for Bruce and hoping that he can be well and come home. I know your prayers for him are the same. And, I thank God daily for all of you - My angels. Merry Christmas and Happy New Year. -Joyce 12/21/07 I am sorry for the delay in posting updates on Bruce. He
had to be moved to the Blaire House's sub-acute wing early last week
because the staff on the long term care wing felt that he needed more
care than they were able to provide, and that he would get more
attention on the wing which has a better staff/patient ratio-They were
right, but a move for Bruce is always work for me too. He is such a
complex case, and receives so many medications that I always have to be
there to make sure everything is correct and on schedule, and to
acquaint the staff with Bruce's unique way of showing that he is in pain
and of communicating with eye blinks. Until the lovely Blaire
folks get to know him better, I have to be on scene as much as
possible. And, as always happens in the Nursing Home setting, I'm
constantly scouting for some belonging which have wandered out of the
room. I send more time and energy at that than I'd like, but I'm hoping
that will calm down as the staff learns what goes into the laundry and
what doesn't. Bruce's new room is very lovely with lots of space
for visitors.( There are few rewards to being on c-diff
precautions forever-A private room is one of them!) His nurses are
very compassionate and attentive-We are very, very pleased with the
Blaire House and the way they all have stepped up to the challenge of
caring for Bruce. Unfortunately, he didn't have much time to
acclimate himself to his new surroundings when he developed a low grade
fever and wasn't doing well. On Tuesday 12/18, we had to admit Bruce
to Milford Hospital because we all felt that he was on a bad roll and
no one wanted it to get worse. To complicate things a bit,
Bruce's physician, Dr. Sidhu came down with the flu the night before and
was down for the count. To his credit (What less would we get
from another angel?) he called constantly to check on Bruce and
dragged himself out of bed Wednesday to come in to the hospital to see
him and then went straight back home to bed. He feels so badly that
he couldn't be there for Bruce, and the nurses tell me that he
calls every 2 hours for updates. It looks like Bruce has a unrinary
tract infection and probably another pneumonia. Antibiotics were
started and , as usual, Bruce rallied. He looked fantastic by Wednesday.
And not a moment too soon- I had picked up Bruce's daughter, Chanel
and his grandson Devin, from the airport Monday night. Chanel had
been here when Bruce was first hurt in August, but she hadn't seen
him with any awareness before she had to leave. Her first glimpse of
him, since then, was in the Milford ER when he was being admitted on
12/11/07 Bruce is on day 5 at his new home, The Blaire House
in Milford. We had a teary-eyed parting from his Spaulding family
Wednesday night, and then Bruce left via ambulance about 10:30am
Thursday morning. We were greeted with open arms at the Blaire House.
The entire staff was there to welcome us, and although they were
overwhelmed with the complexity of Bruce's case, they set right to the
business of learning what they needed to know to make him comfortable
and welcome. I am to understand that the nurses took over a few tables
in the cafeteria and spread out Bruce's paperwork. All the nursing
staff, therapists and support staff gathered for a short" Bruce Firth
inservice". They have done an amazing job at keeping Bruce comfortable
even though he is an enormous amount of work for them. Bruce will have
the same nurse and aid on each shift until they all 12/2/07 I am so happy to report that all those prayers and positive intentions for Bruce have worked once again-(Did I ever doubt that??). He has been accepted at the Blaire House, a skilled Nursing facility in Milford, Massachusetts- Our first choice. It is a small home, about 73 patients when full, and it has 5 physicians on staff; one being a cardiologist- That will be Bruce's doctor. It's a very nice little place with great views in every room and it's located about 5 minutes from Milford Hospital. Even better, it did not receive ANY deficiencies on its last Federal Nursing Home survey- There aren't too many places that manage that. And, best of all, Blaire House is only about 5 minutes from Adam and Jen's house, and less than 15 minutes from Bruce's brother, my mother, and my brother and sisters. Bruce's mother will have about a 20 minute ride, but it's a nice ride which she is familiar with, so, after many months, should allow her some good time with Bruce. Unfortunately, it's an hour + for me, but I'll try to find a job in that area and be close-by most of the time. Our target date for transfer is Thursday December 6, and so far , all looks good for that date. In the meanwhile, Bruce has been fitted for all of his braces and a new, custom made, tilt wheelchair. His general health continues to improve daily. I am so relieved to report that he is more medically stable now than he has been since this dreadful thing happened to him in August. His blood pressure remains a major medical challenge, however. He still experiences huge spikes in his BP out of nowhere, and for seemingly, no reason. When he is at about 60degrees on the tilt table, his BP drops quickly and dramatically. So, he still needs very close monitoring with skilled nursing care. But, other than that, he has adjusted well to his meds, his pain seems to be well managed, and his infections (and antibiotics) will be a thing of the past as of 12/5. His G-tube feedings have been changed to all night long with a short feeding in the afternoon, so that Bruce isn't hooked up to anything all day, making his therapies so much easier for everyone. Right now, he has long, busy days with his therapists: He continues to attempt to be upright on the tilt table with PT, and tries to move his right hand on command with OT. His greatest gains, however, have been with Speech Therapy. He moves his tongue on command, and has been swallowing well enough to have a few licks of a rootbeer popsicle this week. He tries to make noises and we believe that he will make further gains with continued therapy at Blaire House. I have had the best two Saturdays ever with Bruce these last two weekends. Without the hustle and bustle of therapists and doctors, I was able to spend a many quiet hours with him taking him for short walks/rides in his new wheel chair, reading to him and communicating with him using eye blinks for his "yes" . I have read him every letter/card, message, email message he has received, and I have told him every loving gift/visit/thought/prayer/intention that has been made for his recovery. No matter what happens, dear friends, please know that Bruce heard every word and completely understands all that you have been doing for him- I know this with all confidence. Brain damage is a horrible injury and difficult thing to explain to people. But try to understand that the man I speak to does not have the life, the energy, the mannerisms, or exactly the same personality as the Bruce we all knew, but the life behind those quiet blue eyes IS Bruce, and he knows who you are and what you all have done for him. And, once you learn how to read those eyes and the very subtle expression changes in his face, you can see the recognition, his gratitude, and how much you all mean to him. Your prayers are so powerful: please pray that Bruce's new caretakers will look upon him with the same love and compassion we have been fortunate enough to find at UMASS and at Spaulding. And , of course, please keep Bruce's recovery in your daily intentions. Love, Joyce Blare House is located at 20 Claflin Street, Milford, MA. Click here for a map from Google where you can also enter in driving directions. Click here for a website. 11/24/07 Well, I bet you all thought you had heard the end of
the "G" tube stories.... Knowing Bruce, you will not be surprised to
learn that he had another, very brief, MGH holiday visit for, yet
another, G-tube replacement which came out (accidently pulled out more
likely) on Thanksgiving day! Fortunately, Bruce is doing so well
medically these days, that the trip didn't bother him at all, and he was
back to his therapies that same afternoon. The OT department has on him
his brand new, top-of-the -line, super bionic, arm splints that look
like they came right out of the movie" Terminator". (Thank God, he
doesn't have any bullets!) And PT has fitted him with two, serial,
foot/leg splints that make his military issue, arctic bunny boots look
flattering! He's a real sight when fully decked out, but all the gadgets
are doing a fantastic job at keeping his limbs loose and 11/16/07 Bruce finally had that nasty NG tube taken out of his nose and a new G-tube placed into his stomach at Mass General Hosp on Thursday. He did very well and was back at Spaulding that same day. His Rehab team has met and has approved him for further therapy until 12/6-VERY good news! Their goals are to get him medically stable and ready to move to a long term care placement. Bruce's medications all need to be reworked, especially his blood clotting medications, now that his surgery is over. Dr. Lee would like Bruce to have completed his antibiotic therapy as well, and he is looking to get Bruce's body stable enough to increase his brain stimulation drugs to see if he can bring Bruce to a higher level of awareness before Bruce has to leave his care. The therapists are busy making splints for Bruce's limbs to keep them lose and comfortable, and all parties are doing everything they can to learn how to keep Bruce pain free. I (Joyce) am very busy looking at Skilled Nursing facilities close to the Framingham area so that Bruce's mother, his brother Glen's family, and all of Joyce's family can visit Bruce more regularly. That will be especially meaningful over the holidays. It will be long haul for me for a while, but my plans are to sell our home in the spring and move closer to where Bruce is. All in all, Bruce is looking great and doing as well as can be expected. Your prayers for quiet, healing time for Bruce are greatly appreciated, and WORKING!!- Thank you!! 11/12/07 Bruce has had a long and difficult week in his recovery process. As posted earlier, he is battling an intestinal C-dif infection, and early this week it was discovered that he has a blood bacterial infection from his pic-(IV) line as well. This infection is the bad Mercer (?) bacteria which has been in the news for becoming increasingly drug resistant. To complicate matters, Weds. Bruce's NG (temporary nose feeding tube) clogged and needed to be replaced. That means no food, no meds until replaced, and required a trip to Mass General to do so, but the Doc and I knew that that would be too exhausting for Bruce. So, Dr. Lee, with reservations, did it successfully himself at Spaulding. Since all three of Bruce's antibiotics must be continued for a month, the following day a new pic (IV) line was put in which also required a Mass General trip, but also done, with great caution, at Spaulding to spare Bruce. So he has had probably 8 medical exams by 12 different physicians, 2 procedures, 2 NG tubes, 2 Pic lines and, at least 8 trips to x-ray with a temp of 102 and better-All within 3 days or so. As you can imagine, Bruce was looking and feeling pretty bad: He was difficult to arouse, he couldn't stay awake long enough to articipate in his therapies, he has lost quite a bit of weight from the intestinal diarrehea and constant interruptions in nutrition from the ongoing tube feeding crisis, and I was afraid he had lost his edge. I couldn't imagine that his body could recover from such a state in his already weakened condition, and I'll admit that , by Thursday I was very worried. Friday when I arrived, however, Bruce was sitting on the side of his bed, fully dressed, his body upported by his OT therapists, and following commands. He was blinking "yes" to questions, had no fever, and was bright eyed and ready to go. The infection control Doc came in to tell me that Bruce's blood cultures were coming back negative and that the antibiotics had the bad bacteria on the run. As of Friday, Bruce was looking pretty good considering. He needs to put some weight back on which he should do after his G (Stomach) tube is replaced at Mass General on the 15th, and he was very "with it" and responsive. And, to top off this week, the Spaulding case manager informed me that Bruce was not approved to stay after 11/14-The day BEFORE his scheduled surgery! Fortunately, Bruce and I have a Blue Cross case manager who has been our angel from the very beginning. She has been Bruce's biggest advocate and has had to put out so many fires in order to get Bruce into and keep Bruce at Spaulding, I couldn't begin to tell you! She petitioned Spaulding and BCBS to keep Bruce at Spaulding during this time when he is so medically unstable. So we can finally rest knowing that Bruce will keep the same medical care until he is stable enough to be safely transferred into the VA system and placed in a VA contracted rehab Skilled Nursing Facility- Perhaps at the end of November or beginning of December. In the meanwhile, Bruce's therapists are devoted to recovering as much of his abilities as they can and feel that they may want to keep him longer if he continues to make gains - even small gains - which he has been doing even as sick as he has been. What a week! Dr. Lee and Bruce's nurses and therapists deserve combat pay for the incredible amount of time and energy they have had to devote to just him this week. But, they (and your prayers) have pulled US through another difficult situation. I am told that this is the way rehab goes for people with Bruce's degree of brain injury- they are up, they are down, up, down, up, down... UGH! Today, Bruce is holding on because of your continued spiritual support-The calls, the cards, the gifts are all so very helpful and very, very much appreciated, but we know that it is the prayers, thoughts, well wishes, and intentions that have moved mountains for Bruce (and me). Please dedicate your prayers this week to quiet time for Bruce so that he can devote his energy to getting stronger. As Dr. Lee said this week- "Let's put our energy into avoiding the bullets entirely, rather than dodging them." Your prayers will make that happen, as they have so many times.- Thank you! Joyce 11/4/07 Bruce is back at Spaulding after yet another trip to MAss General on Friday. His Dr. tried to replace the "G" feeding tube, but was unable to find the correct pathway in Bruce's stomach, and so, we were off to Mass General to have the pros do it. Unfortunately, Bruce's blood thinner levels were too high to do the procedure at that time. Instead, the MGH Doc put an "NG" tube into into Bruce's stomach through his nose so that he could continue to receive his medications. Spaulding will try to get Bruce's blood thinning levels down to an acceptable level, and then we will go back to MGH for a little minor surgery (with anesthesia) to put in a new and better "G" feeding tube. Needless to say, we (Bruce, me and Dr. Lee) are all anxious to get this feeding tube thing resolved once and for all. These little trips to MGH are exhausting for Bruce, and if I didn't love the MGH gift shop so much, would be a real pain for me as well. So we're looking to return for the procedure early next week. In the meanwhile, Bruce's therapists tell me that they administer a JFK test each week which measure's Bruce's progress in brain function, and they have been able to increase his score by a point every week since he has been there. An example of what they grade might be: While applying pain to a finger, a patient might not respond at all (0 points), or pull finger back (1 point), etc. They tell me that this week, for the first time, Bruce tried to use his other hand to move the painful stimulation away...That's a biggie in the world of brain rehabilitation. He continues to make progress in small increments, but always in the right direction. It's particularly encouraging, knowing that he has been so distracted by these other annoying health issues that he still hasn't had a solid week to completely focus on his therapies. His doctor and therapists are completely dedicated to recovering as much of the "Bruce we knew" as possible. Your visits are welcome, but best call before you come to make sure Bruce will be available-he's a very busy man these days. Your prayers and healing thoughts work-Bruce is living proof of that, but he needs more. Please don't forget him in your daily thoughts and prayers- Joyce 11/1/07 Bruce is having a good week at Spaulding. That pesky "G" (feeding) tube is being replaced this morning. His Doc is tried of messing with it-2 trips to MAss general is enough! Hopefully, this will solve the leaking problems. And, Bruce is on the last leg of his antibiotic for that C-dif infection and then we're in the clear, for a while anyway. Dr. Lee has increased Bruce's nutrition because , thus far, he has maintained a very good body mass. Bruce weighs 180 lbs, which is his optimal military body weight. He has only lost about 35 lbs throughout this whole ordeal and he needed to lose them anyway-He looks great. The Doc has also increased Bruce's muscle relaxant which has made a huge difference. I'm not seeing that horrible pain that he had been suffering with. Bruce's therapists are working hard to loosen him up after being contracted for a few weeks -He's doing great with that. He is blinking recognition about 75% of the time and he is vocalizing-especially when he doesn't like something. Dr. Lee seems to think that much of Bruce's past reactions might be due to anxiety........You are all chuckling because you know Bruce, but I have had to spend the last few days acquainting the Psychiatrist, Psychologist, and Dr. Lee with the "Bruce-I -have-Been-married-to-for-15-years" and, now, we all agree that anxiety is a v-e-r-y strong possibility..(...ya think???. ) The Spaulding folks have agreed to keep Bruce until, at least, Nov 27, as long as he continues to show gains. That is very good news for us all. They are doing good things for him, and we are grateful for their commitment to Bruce's rehabilitation. Thank you to all his visitors this week. I know Bruce appreciates it. The OT has put a Visitor Guest Book in Bruce's room-Please sign in so that I know you were there, and, on the white pages, fill out how Bruce was with you when you were visiting. His therapist needs to know how he is responding to others. Keep those prayers coming- Bruce needs your energy and your love.- Blessings-Joyce 10/26/07 On Tuesday, Bruce spent the day in the Mass General ER, again, because of that leaking "G" tube. The Doc there remembered him from his previous stay and gave Bruce VIP care. They worked up the tube, yet again, and promised that it was working just fine, so the Spaulding staff and I are going to accept the leaks and get on with the business of Bruce's rehabilitation- And our boy has risen to the occasion. His cognitive function seems to be improving every day. Today he was blinking "yes" to everyone: me, nurses, doctor, therapists...It was the first time his doctor actually saw him do it. I asked Bruce to show his killer dimples to his Physical Therapist and he smiled, a real smile. He is suffering with muscle pain and spasms, but Dr. Lee is juggling Bruce's medications around to keep him comfortable. Bruce makes all kinds of sounds these days and his Occupational and Speech therapists are working hard with him to turn those sounds into words-He has said (or almost said) "Hi" a few times. Bruce continues to work with Physical Therapy on the tilt table-He is almost able to stand straight up without a huge change in his blood pressure. He moves his arms to command and he has held his head up a few times without assistance-All HUGE gains. I have read Bruce all the cards that have been sent to him and I have read to him all of the loving messages he has received on this site. I have told him about all those who have prayed for him and have placed his name in prayer circles all over the globe, and I also told him all who have visited him right from the very beginning-He cries when I tell him these things. I know he is moved by the outpouring of love that continues to touch our lives every day-I am sure he can hardly comprehend the mountains you have all moved for him. I am truly amazed at what Dr. Lee and the Spaulding therapy team have done for him. And I am so very grateful to them, as I am to you all, for not giving up on Bruce. He life is a miracle-We have your prayers, positive thoughts and love to thank for that. More good news to come, I'm sure.-Joyce 10/20/07 Bruce's 6 days at Mass General Hospital are over and he is back to the hard work of recovery at Spaulding Rehab Hospital. MGH was a wonderful place. I was worried he may get lost in the shuffle of a large hospital, but the staff took immaculate care of Bruce and the doctors and nurses never took their eyes off of him. The room was comfortable and the facility was very hi-tech, much like UMASS Medical Center. Bruce had a complete work up for his fever/infection. It was determined that his "G" tube was in the right place and working fine, but he did have pneumonia. After a few days on IV antibiotics, he was doing much better. While there, Bruce's brain stimulation drugs were stopped. And when restarted, he seemed to come back at a higher level of awareness. He blinked responses and became very vocal-I'm sure he is trying to speak. His muscle tone has increased significantly, and he moves his arms. We had one day when we communicated all day. He "blinked" that he knew who I was, what had happened to him (He heard me telling him one of the many times I went over the story in his ear), and that he could see things, but not well. Unfortunately, with the increase in awareness has come pain which he did not feel before. He struggles with pain quite a bit, but we are not exactly sure where it is coming from. Since his return to Spaulding, the staff cannot believe the change in him in just 6 days and they are aggressively working with him to see what he can do with it. His physician has completely reworked his medications and increased the brain stimulation drugs to see if Bruce can focus even better. Bruce's baby steps have become slightly larger, and we can rejoice in that every day. The MGH and Spaulding staff are amazed at this guy's will to live -No one can quite believe the gains he has made considering what his body has endured....... Your prayers at work! Remember: In the Spirit all is possible. Joyce 10/13/07 We are nearing week 3 of Bruce's rehabilitation after
his cardiac injury on August 9-(Yes, it has been that long!) The Blue
Cross caseworker and i were able to get Bruce's doctor changed to one a
bit more receptive to Bruce and his special needs. I am very happy to
have Dr. Lee working with Bruce-It's a much better fit for us all.
AND, I am thrilled to report amazing progress for Bruce this week- not
in baby steps, but in genuine strides. Bruce was started on a brain
stimulating drug about a week ago which we all felt truly woke him up.
This week he was started on another drug, Ritalin, which, just like in
children, helped him to focus. The therapists and I have all seen real
recognition in Bruce since the drug was started, and we have seen him
consistently follow commands with intention for the first time. He is
able to move his arms, and he is trying to follow with his eyes and
vocalize-All HUGE steps for Bruce. These gains are seen mostly in the
morning when he has more energy, but there have been tears of
recognition throughout the day, as well. If you are reading this, then
you know Bruce. And if you know Bruce, you know that things just don't
go this smoothly....So, for the babystep backwards.... Bruce was
admitted to Mass General Hospital Friday night because he has a fever of
unknown origin. He is having some trouble with his stomach feeding tube
as well. He is alert and comfortable, and getting good care. We are
hoping he will be back to Spaulding and his therapies within a few days.
Your prayers for Bruce's recovery and protection are always needed and
appreciated. 10/7/07 Bruce has just completed his second week in rehab.
We,( Bruce's family), are seeing progress, in baby steps, but progress
none-the-less. Bruce is more and more alert with each week, and the
alert periods are lasting longer and longer. He is tilted up and down on
the tilt table, and is able to bear his full weight on his legs without
much fluctuation in his vital signs-good news; His fingers, arms and
legs are moving- It may not be intentional, but movement in all
extremities is a new sign and a good one; Bruce is vocalizing with
sounds-I believe they are intentional, but, according to his doctor,
this is a subjective assessment; Bruce sat in his chair for up to 5
hours this week, and he seems to have a pretty good swallow according to
his Occupational Therapist-All improvements and all in the right
direction. Unfortunately, Bruce's physician is not as "on-board" with
Bruce's recovery as we would like. He has only approved Bruce for one
additional week at Spaulding, stating that he is "not seeing substantial
gains". Apparently he feels that 2 weeks of therapy for an otherwise
healthy 54 year old man is sufficient. Fortunately, our caseworker at
Blue Cross is 100% behind Bruce. And, I have requested a meeting with
"Spaulding folks" to discuss changing physicians as well as being
invited to these team meetings where 10/3/07 There must be some very intense praying going on out
there by all who love and care for Bruce! On Monday of this week, after
3 hours of various therapies, I sat with Bruce and watched him move his
arms. The movement was initiated from his shoulder area, but he
was able to jerk his hand out of mine as I asked him to. On Tuesday, he
was moving his right thumb ever so slightly, but movement , none the
less. These are the fist signs of life we have seen in his upper body
since the day Bruce was hurt! As if those efforts weren't enough, he was
trying , over and over again, to find his voice to speak to me.
After the stimulation of his therapies , Bruce is so very "there". I do
not know what he sees, but I KNOW he hears and understands at these
times. After working so hard for a time, he is exhausted, and the staff
at Spaulding tells me that he sleeps comfortably all night 9/30/07 Bruce has just completed his first week in Spaulding Rehabilitation Hospital in Boston. His team: Doctor, Physical Therapist, Occupational Therapist, Speech Therapist and Case worker meet twice a week to discuss his progress and create a "plan" to work with and strengthen Bruce's abilities. At the end of his first week, Bruce is dressed each day and sits up in a special assistive chair (helps to hold him up) from 3-4 hours a day. Physical Therapy takes him to PT for sessions on a tilt table which slowly stands him up-They check to make sure his heart and other vital signs are stable when he bears weight on his feet. And, they give him range of motion every day of the week. OT and Speech both are giving intensive sensory stimulation with smells, flavors, sounds, and tactile stimulation. Bruce's heart and other physical systems are tolerating everything very well-He remains on tube feedings via stomach tube and he is still on a monitor for oxygen saturation( a way to monitor his breathing because he cannot call for help of he needs it), but other than that, he requires very little system support. The big challenge from this point on is the neurological picture: Bruce's awareness. He is still considered "minimally responsive" and he reacts and responds to very little in his environment- We're not seeing recovery here in leaps and bounds as we had hoped. Spaulding has a few tricks up their sleeve to help "re-boot" Bruce's brain a bit, and they will try them all, but this is where we all need to pray for miraculous healing for Bruce. Statistics for recovery of normal brain function from this kind of brain injury after 6 weeks are not good. We are praying for Bruce to beat the odds again-If anyone can do it, he can. This is , possibly, the most difficult place for Bruce's family, as it is the time to accurately assess the long term damage Bruce sustained, and predict the future of his recovery. Please, please, please, stay hopeful and continue your daily prayers for him and his family, who love him so much. Blessings-Joyce 9/28/07 Bruce's first week at Spaulding has been eventful for him. He seems to have beaten back whatever was causing him to have a fever. He has has rehab 3 times a day. They got him sitting up in a special chair, and even had him "standing" in another special device as well. Must have been quite a sensation for him after all these weeks of laying down! He seems a bit more alert than when he came to Spaulding last weekend, but still not any movement. The team at Spaulding have indicated that one of their biggest challenges going forward is to keep Bruce medically stable. So far so good! On some level, Bruce is continuing to fight as has always been his nature. Your thoughts, prayers and energy help supply the fuel he needs to do that. There is still no definitive word on what the medical professionals feel his long-term prognosis will be or how much he could recover; they are very non-committal (understandably so), but they continue to work hard to help Bruce. No one really could know for sure. The family remains very hopeful. He is, as you know from reading these updates, still being tube-fed and still receives IV support. His lungs continue to be strong and he is breathing on his own without assistance or supplemental oxygen. 9/25/07 Hello everyone. I know that people have been anxiously awaiting an update on Bruce. Things have been happening hour-to-hour so it would really have been a disservice to post an update and have it be incorrect as soon as it's posted until things were a little more stable. To that end, we are in a period now where an update is warranted, so it is below. Thank you all for your patience. Lets start this update sort of out-of-order. Over the weekend, Bruce was finally transferred to Spaulding Rehabilitation Hospital in Boston. Directions to the facility are here. It's easy to get to by a variety of means, but in a tricky spot to coordinate with traffic. More on that at the end of this update. Bruce arrived on Sunday, and was not in his recent bright state. He seemed, for lack of a better term, tired. Yesterday (Monday) they found he had a fever, and began to treat that immediately. We are confident that Bruce will rebound from this setback and continue on his road to recovery. He had his first day of 3 full hours of rehab on Monday which we are very happy about. At Spaulding he will receive at least 3 hours of therapy - speech, physical and occupational - every day. Spaulding is a radically different environment from the UMASS ICU. It's bustling and busy, he has a roommate. The facility is older, and there is less space. However, the care at Spaulding is exemplary. We have met some of his caregivers, and so far they seem competent, compassionate caregivers. This past week and more had been quite tumultuous. Bruce had a lot of things happen to him to lead up to this transfer to Spaulding. He had another bout with fever that was successfully controlled. He had his trache taken out. He had been accepted at Whittier and was prepared to transfer, but at the last moment he was denied admission due to insurance snafus. However, once again, he beat all odds and is now in what is commonly considered the place that will give him the best shot at some kind of recovery. Your prayers and angels are needed now more than ever. Bruce needs every ounce of energy you can spare to help lift him up and give him the strength he needs to to try to turn a corner. Getting to Spaulding. If you care to visit, please email us and we will give you his room number and other specifics (don't want to post that on the internet as you can imagine.) Spaulding is accessible by car or by rail. They have a parking lot next to and across from their building. Essentially, for those of you who know Boston, Spaulding is right next to the TD Banknorth Garden (The former Fleet Center), at the very end of Storrow Drive across Leverett Circle - see map below. Click on map to be taken to Google Maps where you can get driving directions.
In addition, you can reach Spaulding via the MBTA using either the commuter rail, or the subway (from any line.) The Green Line, and Red Line go directly to North Station (which is the TD Banknorth Garden). More updates will be posted as events warrant. Please keep the positive energy and words of encouragement coming, and continue to pray for Bruce. Thank you so much for your support - it has made all the difference. 9/16/07 Bruce is looking well these days and, physically doing very well. He has had a few procedures since the last update which have made him a better candidate for a rehabilitation placement: He had the GT (stomach feeding) tube changed to a "J" (intestinal feeding) tube; He had a PIC (more permanent IV) line put in his upper arm, and he now has a smaller trach tube in place which is not nearly as irritating. His coughing has diminished and his need for suctioning is very much reduced as well. Spaulding was in to see Bruce last Monday, but still felt he wasn't quite ready-They will be back this Monday to reevaluate him. In the meanwhile, Whittier Rehab Center in Marlboro has accepted Bruce. So, if Spaulding is still noncommittal on Monday (9/17) and Bruce is medically ready, he will go to Whittier until he meets the qualifications for Spaulding. Bruce has moments, and sometimes hours when we (his family) feel that he is "there". He seems to blink his eyes appropriately to questions and cry when he hears a familiar voice or a familiar name. During those windows, we talk to him and try to explain what happened to him, but it is not clear how much gets through. These little windows come and go, sometimes with days in between, but they do seem to be occurring more frequently. We hope and pray the aggressive Physical Therapy in the rehab setting will fire up all those nerve endings and bring him around. Bruce is a worrier-We know that if anyone can do this, he can. I strongly believe that your positive thoughts, prayers and devotion to Bruce's progress is the cornerstone of his healing-Please don't forget him in your daily prayers and conversations. Blessings, Joyce 9/12/07 Bruce is doing fairly well. He seemed to have had some kind of infection several days ago and his team attacked it with a bunch of antibiotics that appear to have worked. He was looking a bit run-down and sweaty, and he was producing a lot of secretions for awhile there, but now he looks much better. While he obviously wasn't feeling well, we didn't see much by way of brightness and facial movements, etc. Now that he is feeling better, we have seen some more of the crying episodes when certain people talk to him or certain names or subjects are brought up. His eyes are open wide again and he seems to be in a better place. His body continues to fight hard to be as healthy as possible, but we still haven't seen a lot of progress in his journey to "wake up" other that what I described above. Spaulding Rehab is scheduled to re-evaluate Bruce this week and make a more final determination on whether or not they will accept him as a patient. If they do not, we will then pursue another facility for him to go to to begin rehabilitation in the hopes of stimulating his body and brain into renewed activity. We continue to trudge through the various logistical tasks surrounding his benefits and employment and care, etc. One note of thanks. Bruce's "other family" aka the National Park Service have been wonderful in helping to navigate through the complicated processes surrounding Bruce's benefits and such. Special thanks to Mike McCarthy for moving everything along and being our constant support there. 9/7/07 Yesterday, we had a family meeting with all of Bruce's health care providers: Cardiac surgeon, bedside RN, Social Worker, RN Case Manager, and Neurology to discuss Bruce's condition, progress and future placement. It was a very informative meeting. Joyce, Adam (Joyce's son), Jennifer (Adam's wife), Glen (Bruce's brother), and Bruce's mother asked a lot of tough questions, and we feel that the staff did everything they could to give us honest answers. Without going into enormous detail, the summary of Bruce's condition is that: his body has and continues to function (metabolically) as that of an Olympic athlete. It is in hyper-drive, with the healing process driving every cell of his body 24/7. He is off of all support except a few meds, and the open trach in his neck which requires frequent suctioning. And , of course he needs to be monitored constantly because he cannot call for assistance if he needs it. Although, neurologically, he is still low-functioning (basically non-responsive with minimal muscle movements), he does open and close his eyes to sound and he does sometimes cry with familiar voices. The professionals tell us that the tests run on Bruce's brain show that it did take a "hit" during the initial phase of low oxygenation after his Aorta ruptured, but they did not see any permanent damage, and even with all the imagery/testing that was done on him, no one could tell us that there was anything seen that would prevent Bruce from waking. So we hold onto the notion that his brain is healing and finding new pathways to do old things, and we look for signs that support that. The general consensus is that Bruce's ability to heal to the extent that it has already is miraculous on many counts-particularly in that he had 3 system failures (Cardiac/heart, Renal/kidney, Pulmonary/breathing) after the surgery which, according to national statistics, left Bruce with a 100% mortality rate within 48 hours after surgery. Couple that with the almost 0% survival rate were were given when he went into surgery-Bruce has beaten the odds, in a BIG way, twice already. The UMASS Cardiac team gave Bruce's body a chance when the odds were against him- Now, we are looking for a place that will give his brain the same chance to heal. We, (all health care personnel and family members) agree that Spaulding Rehab is the best place for that kind of healing, but, yesterday, after their second evaluation of Bruce, and although they do see improvements, they still haven't made the commitment to take him. They are, however, going to re-evaluate him again next week. In the interim, Joyce is looking at a few more alternate places closer to home-just in case. In the meanwhile, he remains in UMASS Trauma Center Cardiac ICU under the watchful eye of God and all of is angels there. The meeting left us feeling a little more positive about the outcomes for Bruce's recovery. We all know well that Bruce is nowhere near ready to give up, and we are with him for as long as he needs us. Since Bruce isn't having anymore dramatic changes in his condition these days, we don't have huge news to report from day to day anymore. So updates will be posted less frequently, unless there is something more immediate to report. No news is good news! We do however, still need those prayers, positive thoughts, and loving support every single day-I don't know where we would be right now without it. We love you all, and thank you more than you will ever know. 9/5/07
Bruce's EEG yesterday showed "diffuse slowing" which is no change from the last reading. It appears that the little "break through" we have been seeing could be involuntary responses to sounds/voices. Bottom line.... no one really knows. He has a Physical Therapy/Occupational Therapy evaluation again today, which the staff feels will also show little or no change from the last. Spaulding Rehab center requested these evaluations because they are looking for Bruce to be functioning at a higher level, and needing a little less care for admission to their facility in Boston. We all will be looking at 2 other rehab facilities as back up in case Spaulding does not accept Bruce. Other than this, Bruce's condition is unchanged. His body is healing well, and there is little more the ICU staff can do for him. What he needs is intensive Physical Therapy and Neurological care for whatever injury his brain may have sustained during the initial hours after his aneurism ruptured almost 4 weeks ago. Everyone has been so faithful with their prayers and support for both Bruce and I- It has lifted me from the pits of despair more than once-Thank you, but please do not stop sending all that positive energy to us- We need it now more than ever. Love-Joyce 9/4/07 As many of you may have already heard, Bruce had several hours of semi-awareness this past Sunday. He seemed to be tracking movement with his eyes, and he was having emotional responses to specific references to friends and family. Unfortunately, this has not been permanent. Yesterday (Monday) he appeared to be back in an unresponsive state. Everyone came to visit him, but we got nothing until the last person, Jean, Bruce's mother, left. About 30 minutes after she left, Bruce started crying again for about 15 minutes. We appear to have just caught a little window on Sunday evening. Keep your fingers crossed and your prayers coming that this is the beginning of a transition to awareness. We are told that this is part of the process. Bruce is scheduled for another EEG today. As is par for Bruce, physically, he looks pretty good. He is much more comfortable with the trache in. He is clearing his own secretions, and he is down to 30% oxygen as of Sunday night. His various scrapes and cuts and his chest incision are all healing very well. We have not heard of any other issues with his body so far. We are preparing for Bruce to be discharged from the ICU at UMASS Memorial and move to a rehab facility. We are asking that he be moved to Spaulding Rehab Hospital in Boston, which everyone agrees would be the best place for him, and would give him the best chance of any kind of recovery. We are awaiting on the administrative process at this point (discharge orders, insurance approval, referrals, admission acceptance, gathering the appropriate paperwork, etc.) 8/30/07 Hi everyone. Bruce continues to do relatively well. Here are today's updates:
I (Adam) will be away for the long weekend, so there will be no updates until next Tuesday. Happy Labor Day everyone! Thank you again for your continuing messages of support - it all helps. Just dropping a line to say you're thinking of Bruce, or that you checked in or to just say "hi" means so much to his family. 8/28/07 Bruce had a tracheostomy tube inserted last night. He no longer has the tube in his mouth. Joyce said he looks more comfortable now. They have him hooked back up to the ventilator, and it is assisting his breathing again, just until his body gets used to the new "hook-up" and heals from the surgery. They gave Bruce a unit of blood just to be on the safe side. He has a feeding tube in his stomach again. The plan at this point it to keep him in the cardiac ICU until he completely heals from the trache surgery, and his pancreas is healed, then he will move to the cardiac floor. 8/27/07 Bruce is going to have surgery today to remove the endotracheal tube from his mouth and put a tracheostomy tube in the little hollow spot at the base of the neck, right above the collar bone. He will also have a feeding tube put directly into his stomach, although he will probably continue IV nourishment for a few more days until the pancreatitis is completely resolved. The course from this point on is to make sure he is completely stable after these procedures and then completely wean him off of ventilator support. When he is free of assisted or supported ventilation, he will be released from ICU to the cardiac floor. Bruce had his eyes wide open yesterday and was moving quite a bit. I saw him moving his tongue and trying to swallow. Still no awareness but in an awake state. At times, he was coughing so hard because of that tube in his lungs, that the RN had to mildly sedate him, after which he went right out-Definitely a different state entirely. So, little baby steps, but in the right direction. 8/26/07 Saw Bruce yesterday. He was propped up and looked pretty much the same. His lips were a bit swollen from the tube, and his arms/hands had a bit of fluid. But, otherwise, he looked OK. His chest incision looks fantastic. He was breathing 100% on his own without help from the breathing unit. His eyes were opening wide to our voices (still no recognition behind them, though.) Both of his legs were jumping around quite a bit as I read him the most recent messages from this site. Bruce listened to some meditation on the headphones, and then we switched over to some James Taylor. The meditation seemed to stimulate him a little (slightly higher heart rate, some wiggling legs, etc.), and the JT lulled him to sleep! No new news as far as anything else goes. 8/25/07
Dear friends and family- I have
read every word you have written and felt every prayer over these last
15 days. Bruce and I are so fortunate to be surrounded by such love and
support. We'll never be able to thank you. My family, Bruce's family,
particularly my son Adam and Bruce's daughter Chanel, have been a
constant source of love and companionship for me. Please continue to
keep us in your daily prayers, as we are at a very difficult place in
Bruce's recovery. He remains in the Cardiac ICU with intensive care,
however, it is not at the most critical level as it was before. His body
is healing, but still fragile. He is off of most support systems, his
Pancreas seems to be healing, and his lungs are amazing-He breaths on
his own with a respirator as back-up support, but all agree that he
probably doesn't really need it any more. The breathing tube and feeding
tube will probably be removed very soon. It all sounds great, but the
problem is that Bruce just doesn't seem to be coming out of the sedation
state. Bruce opens his eyes to sound and occasionally jerks his foot,
but there is no recognition at all. He has had an EEG and an MRI on his
brain. Neither show any large areas of damage that would affect his
ability to return, but it just isn't happening-No one knows why-The
staff is puzzled by it- there are just no answers. The sedation was
stopped on the 15th-We are on day 9 and still waiting. This is longer
than the usual waking period, although there is no set time frame for
anything concerning this type of injury, and God knows, Bruce will do
things his way, but- the fact remains that every day that passes lessens
his chances for a full recovery. It is a torturous time for me and all
who love him, and I beg you all to continue your loving prayers for
Bruce's return to us. 8/23/07 I'm happy to say that there's nothing new to report as of this morning. Bruce is "status quo" at the moment. I attempt to update this site every morning, but it really could be anytime during the day depending on schedules, etc. If I know I won't be able to post for more than a day, I will try to post that here so y'all know. If there's no update, that doesn't mean anything has happened! I promise to update as soon as possible if there is news. So, if there's no update first thing in the morning, DON'T FRET!! I will post more than one update if the day's events warrant it! SITE NEWS: I have some great pictures of Bruce that my Aunt Julie gave to me. I'm in the process of scanning them in and will finally activate the "PHOTOS" link above. If you have any pictures of Bruce that you would like to submit, email them to me and I'll post them. Keep sending in your words of encouragement and support - it really does mean a lot to the family, and we thank you so much. When I go in to visit Bruce, I go to the site on my Blackberry and read every one of them to him - I know he can hear me. 8/22/07 Bruce had his MRI yesterday afternoon. They are reviewing the results. Dr. Tam went through Bruce's EEG results. He said that the electrical activity in Bruce's brain is slow, but it is consistent with someone who has been unconscious and under sedation, so it's nothing abnormal. Bruce has Pancreatitis which is what they think is causing his elevated temperature and that's why they want to give his gut the chance to "rest" as yesterday's update explains. He is now on 2 antibiotics, one for possible pneumonia or other chest infection nipped in the bud, and one for the pancreas. The addition of the second antibiotic seems to have helped, but he is still running an elevated temp. Also, there has been some talk about performing a tracheotomy in Bruce in place of the tube going down his throat through his mouth. At this point, there are no decisions but it is in discussion stage with his team. He is yawning quite a bit, and there have been some small flexations in one foot. He has some facial contractions and his night nurse seems to think they are another level in the movement toward consciousness. At this point, the medical team still maintains that there is nothing that Bruce couldn't recover from, so that's a good ray of hope in the future. 8/21/07 I forgot to mention in yesterday's update that Bruce's chest tube was removed. Yesterday evening, Joyce, Adam and Chanel met with Dr. Tam. He called us together just to touch bases and go through everything. Nothing radically new was discussed. Dr. Tam said that there is no reason to alter from the present course of treatment. Basically, they are going to continue to get his body healing with the expectation that he will wake up and return to us. Dr. Tam said that there are some indications of bowel issues because of his enlarged pancreas. However, Bruce isn't behaving as if he's having bowel issues, so they don't' think there's a major problem at this point. However, they are no longer giving him nutrition into his stomach. Rather, they are giving it to him directly into his bloodstream. That way his bowel does not have to digest and can essentially "rest". One of the indications of good nutrition has to do with measuring protein, and Bruce's measurements are that of a normal, non-sick person. Bruce still has the breathing tube in his lungs, but it is at the lowest possible setting. He is essentially breathing on his own with very little help. The medical staff have said that the moment he wakes up, they will remove the tube. Even in his current state, it is obvious that he does not like the tube being there, so it'll be good to have it out! Last evening, they were scheduled to do an MRI on: Bruce's Head, to check for bleeds or stroke, Chest to check for infection, gut/bowel to check for any issues. However, that did not happen. There is some worry about injecting the dye needed to do the test. Bruce's "team" is discussing this today and will make a decision. The results of the EEG have not yet come back. Chanel and Devin have to return to Phoenix today. This certainly is a tough trip for them to make. Bruce has a bunch of pictures and cards of and from family/friends pinned up in his room. He has his prayer shawl on him all the time. Joyce talks and sings to him when she's there. Many family continue to visit daily and talk to him, sing to him, move his arms and legs and try to guide him back. 8/20/07 As mentioned in the previous update, Bruce is going in for an EEG today. This will give the doctors a good idea of how his brain activity is recovering. Everyone keep Bruce and his family in your prayers today - this will be a critical milestone for his recovery outlook. Physically, he is doing rather well. Breathing: they have reduced the number of times a minute that the breathing machine makes him take a breath, and he is taking the rest of the breaths on his own. He is coughing a bit and struggling some with the tube. Body: his white blood count is up, and he has a fever. Both of these conditions come and go, and they do not coincide, which is unusual. Usually, a fever coupled with a higher white blood count would indicate an infection, but since these things are not coinciding in Bruce, they're not too sure what's going on there. The excess swelling from the fluid is gone - he looks like himself again. Mind: Not too much yet. He is opening his eyes as before, but there's no consciousness we can see yet. He isn't moving any extremities. We'll know better how things stand after his test today. I feel it's prudent at this point to re-state the reality of the situation. Yes, it is true that every sign of improvement is glorious and wonderful and hopeful, and it will continue to be that. Positive energy is what we all need - especially Bruce, and hope is not something that is ever bad to have. We have hope and confidence that if anyone can beat this thing, it's Bruce. However, I don't believe that stating the truth or the facts takes away from any of that positive energy or any of the good things that happen. This site is about truthfully and frankly stating what's going on with Bruce. If you are here reading this, then Bruce is important to you in some way, and you want to know how he really is. We have no intention of insulting your collective intelligence by only stating small positive gains while ignoring the gravity of the overall situation. Therefore, it's very important to remember that he is still critically ill. He is out of that immediate "life or death" jeopardy, but he is still one of the sickest patients admitted to UMASS. There are no guarantees on anything. That being said, Bruce's body is beginning it's long road to healing, and there are some very positive, measurable things that have improved. He is not yet back with us and we are waiting to see if he will wake up. One other note is that Bruce's immediate family are eternally grateful for the huge outpouring of support and concern from all over the world - via email, the internet, phone, in person. It has meant the world and helps them get through their own private day to day battles with this situation. Thank you. 8/18/07 Bruce is completely off dialysis and the sedative medication. They are starting the process of weaning him off of his ventilator. He went for 2 hours without it yesterday afternoon. His white blood count is elevated and he has a fever. The are taking him for an EEG on Monday. Bruce has not been responding very much to external stimuli and he is not conscious. His vital signs do change a bit when a familiar voice is speaking to him, which is a positive sign. In particular, he responds slightly when Joyce and Glen are speaking to him. He has had lots of visitors who are speaking to him and touching him and trying to guide him back to us. He also had a CAT scan today. It still needs to be read by the radiologists, but on "first look", it didn't appear that there were any clots or bleeds or anything in his brain, and it also didn't appear that there was any dead tissue, which is very good. They also gave Bruce some pain meds today. He was biting down on his vent tube (the tube that's breathing for him) which could have been a sign of pain. At this point, his body is beginning to healing. Other than a possible infection which the medical team are right on top of, Bruce is physically getting better. We are now just waiting to see if he will wake up. We are told that it is NOT particularly unusual for people to take time to wake up from this sort of injury - they don't always just wake up right when the sedative medication is stopped. So it is still a "wait and see" situation. 8/17/07 - update2 The nurses taking care of Bruce officially "banished" the family for the day, insisting that they leave and get some rest. There has been someone there with Bruce just about every minute of every day, and we are all very grateful for the support. Bruce is opening his eyes today in response to verbal stimuli from familiar voices, particularly Glen and Joyce, but he is not yet back to awareness. He is currently completely off the sedative medication that had been keeping him unconscious, so now we wait for him to find his way back. 8/17/07 Bruce continues to make some progress in coming back into consciousness. His eyes open slightly, and when there's noise in the room with people talking, he opens them a bit more. It's unclear if this is in reaction to the voices or not, but when the room quiets down, he closes his eyes again. He is back on medication to control HIGH blood pressure. Up to this point, they had worried that it was too low. However, Bruce has always battled high blood pressure, so this actually puts him back into a more normal state (for him). His heart continues to beat strong, and most of the excess fluid has left his body, so he looks much more like himself. They moved his line for dialysis from the groin area to his neck. The dialysis team was in yesterday afternoon to check up on Bruce, and they report he's responding well and is producing urine on his own, which is excellent (it's interesting that all through life, as a baby or as an adult, successfully "peeing" is always a milestone and you never quite outgrow that, do you? :-) Bruce will be mortified to read these updates!! ANYWAY, the next major hurdles for Bruce are:
8/16/07 Dr. Tam successfully closed Bruce's chest yesterday afternoon. The doctor said that he checked everything and said that Bruce's heart, lungs, etc. all looked good, and that the repair site seemed to be holding and healing well. One nice comment is that the doctor said Bruce's heart is beating strong, although that's probably not a surprise for anyone who knows Bruce. They have also begun to ease off on the sedative that is keeping him unconscious, so we expect him to start to wake up slowly over the next several days. His eyes were open a bit yesterday afternoon, and he showed a few little signs of movement, which is all great news! As he wakes up, they will manage his pain with medications, and we are all anxious to see how much of him returns - there's just no way to know until he comes back. Much of the fluid that the medical team pumped into him has drained away and he looks much more normal, now. He is still intubated and on kidney dialysis. One point of note is that, when asked how many units of blood Bruce has received over the past 6 days, the nurse couldn't even guess at the number. She said he had over 20 units just in the first hour of his first operation, so it could be 100 units or more! They brought the bags up to the O.R. in huge stacks, and used them all. So, everyone who has asked what they can do to help, please consider giving blood. One of the only reasons that Bruce was able to survive was because of donated blood, and he certainly has used his share of the supply! So, if you really want to do something to help, please give blood. The official blood giving website of the American Red Cross is www.givelife.org and you can check for local blood drives in your area. The site for the blood donation center at UMASS Memorial Medical Center where Bruce is being cared for is here. We are also looking into hosting a blood drive somewhere at some point. We'll keep you posted.
8/15/07 Dr. Tam was able to closed Bruce's chest this morning. The doctor said his heart looked strong and the repair was holding well. The rest of his other organs, etc. looked good. He has been off of all drugs except oxygen, insulin, the sedative and he's still on dialysis. This is down from the myriad of drugs that he was on. (This is all good news, by the way!) The nurse said he opened his eyes a little this morning. Sometime this afternoon, the doctors will be lowering the sedatives he is getting and he should begin the process of "waking up" from his medically-induced comatose state. Go Bruce!! 8/14/07 Bruce is showing little signs of improvement which is nothing short of a miracle at this point. The surgeon was not able to close his chest yesterday as he had hoped to do, but he did say that Bruce's repair site looked good, there was no sign of infection and his heart beat was good and strong. His nurses say that they see hourly improvement in the myriad of things they monitor and his oxygen requirements are lessening all the time. He has a LONG way to go and at least one more surgery in the next 48 hours, but our boy is fighting like a trooper and we are putting our money on him to fully recover. |
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