Sunday, April 25, 2010

John's friend Candy brought Moonlight by for a visit!





In the past week or so, John has continued his recuperation process at TIRR. Therapists have structured his rehab so that it will hopefully not interfere with the leads from his Baclofen pump. They have also begun to adjust the amount of Baclofen which is released from the pump. The idea is that they adjust it and then see how John does and then adjust it again and so on until they obtain the perfect amount for him. It's not an exact science and at this point they have steadily increased it and will continue to tweak it as the weeks pass. John's speech and swallowing have also improved a bit and we are encouraged because it is somewhat better than it was prior to the Baclofen pump placement. Obviously, we are hoping for huge changes with the pump but at this point, it's the little improvements which keep us grateful and hopeful.

In the big picture, his condition has deteriorated over the past few months. I wish it were better news but the fact is that I wish to portray an honest account of what is going on. Essentially, the progress we are making at this point is remedial and although we are happy that he is feeling better, John has had quite a few setbacks and for us to begin gaining ground again will be a wonderful and precious thing.

I have tried to help out with things around John and Holly's house while he has been hospitalized and I recently had something special happen that I wanted to share. I was in the attic about to change their air conditioning filter. This is something I hadn't done before so I truly had no clue how to do it but I knew it was in the attic so I pulled down the ladder, grabbed the new filter and headed up! So, I was looking around with my mini flashlight to figure out where the thing was and how to change it and in the back corner of the attic was a pair of pliers and a screwdriver right below where the filter goes. It was as if John left me this huge clue and the perfect tools to get the job done just in case, and it really choked me up. So, there I was...up in the attic sweating and crying and missing John more than ever. It's not that he is gone of course, he is simply in a different place in his life. The fact that he is so organized in all aspects of his life reminds me of how he has always done so much for others and never wanted to be a bother. We have had many other incidents similar to this one but it was simply so unexpected that it almost felt as though John were right there helping me change that filter. If he had been, he probably wouldn't have let me up that ladder because he knows how damn clumsy I am! I am guessing that he has left many of these clues throughout his life. Maybe they aren't as tangible and maybe they are simply something he has said or done but I would bet that each of us has our own "John reminders". I could only hope that if something catastrophic were to happen to me, I would have my affairs in order enough that those close to me wouldn't have to go through too much trouble.

Tuesday, April 20, 2010

Since the last blog posting, John unfortunately had to undergo yet another surgery. The Baclofen pump leads once again moved and had to be repositioned. His surgeon said that this rarely happens once...much less twice. We were very discouraged that John had to have another surgery but I am happy to report that the leads were replaced and as of today, the pump is functioning properly and John is recuperating. John continues to have some difficulty swallowing however with the placement of the feeding tube, he is receiving adequate nutrition and fluids. He is back at TIRR and as soon as he has healed from this surgery he will hopefully resume daily rehabilitation.

Over the past weeks, John has had a total of 5 surgeries. Two to replace the Baclofen leads, one to place the feeding tube and one to curtail internal bleeding. This has been a rough time for him and since he has a brain injury, someone has to be with him in the hospital 24 hours per day to answer questions on his behalf and make sure that he receives exceptional care.

This has been an emotional roller coaster as you might imagine. Each time we start to feel that John is recovering and may begin improving there has been a setback. We are hopeful that at this point there will be no more surgical procedures and he can continue on his path to recover strength and gain some weight. His overall health remains good in that his kidneys are functioning normally, his heart is strong and he is as comfortable as possible. At some point soon, John will be released from TIRR and will most likely return to Mentis to continue with his rehabilitation and recuperation. His physicians will also continue to monitor his medications in an effort to give him every available opportunity to thrive regardless of his diagnosis. While the future is uncertain, what is certain is that John is still in the window of time which should allow for improvement and the eventual progress toward good quality of life and comfort. What is also certain is that John has many folks praying for him constantly and so many who love him. The continued support exceeds our wildest expectations and we wish to thank everyone for their well-wishes, thoughts and prayers.

April 11, 2010

Several weeks ago, John had surgery to replace the Baclofen pump leads. Up to that point he had been having some difficulty swallowing and so eating and drinking were arduous. It was decided that physicians would place a PEG feeding tube in John's abdominal area to assist him in getting the appropriate amount of fluids and nutrition. This was an outpatient procedure performed at St. Joseph's hospital.

John returned to TIRR but after a few days, John's physicians noticed that his hemoglobin counts were steadily declining. At first, they believed that his body was simply recovering from two surgeries within weeks however it soon became apparent that there was something else wrong. They continued to test his blood and continue his medications but the hemoglobin numbers kept getting worse to the point that John required several blood transfusions throughout the weekend and we were waiting to see whether John would need further surgery. As it turns out, declining hemoglobin numbers can be a clear indication of internal bleeding and we were told that if it got worse, John would need surgery to correct it.

Shortly thereafter, John was taken to St. Joseph's hospital and was immediately taken into endoscopy surgery where his doctor quickly found the source of the bleeding and corrected it. John stayed in the hospital for several days for monitoring and to recuperate and receive blood and placelets to help him get his strength back and raise his hemoglobin levels. Fortunately, it worked. John is now back at TIRR and will hopefully keep getting stronger and will resume therapy this week.

As far as John's progress and current status, what I can tell you is that his body has undergone a tremendous amount of stress and it is difficult at this point to guage where he is in his recovery because he has been through so much in the past 4 weeks. Since he has been at TIRR, he has been unable to fully utilize therapeutic resources as he failed to reach a level of stability which would allow him to do the things necessary to regain his strength. Each of the times he would go through surgery, we would hope that he would recover quickly and be able to resume therapy and continue on his path to recovery however, each time there have been huge obstacles. I will tell you that John has not been in pain and has had constant care from family and medical personnel.

This situation was critical and was not anything that was expected. Holly wanted to mention that if she has been a bit unavailable as of late, it is because she has been at the hospital with John. As always, we simply cannot express enough how much your thoughts and prayers mean to us.