Sorry I haven't updated for a while. We have had quite a rollercoaster ride the past 2 days. Yesterday the neurologist said that a repeat CT scan showed quite a few areas of infarcted tissue in the brain. This is most commonly caused by stroke or other brain trauma. She painted quite a grim picture and told us that this morning the neuro team would get together and collectively decide the best course of action, whether that was to continue treatment or to consider us done. Needless to say, we were all pretty down. After she spoke to us, my son Lyman asked if I wanted to have a family prayer. There were only a few of us there, but I decided to offer it myself. I basically pleaded to our Heavenly Father to help us to understand whatever was in store for Lynn and that if he could see it his way to grant us a miracle, we would be eternally grateful. Nevertheless, we are leaving it in his hands and we wanted whatever was best for Lynn. Later, as I was sitting with my son and brother and listening to the two of them talking, I felt a huge weight lifted off my shoulders and clarity of mind came to me telling me that when the neuro team talked to me the next day, the things I should tell them I felt like needed to happen. Basically I felt that since there is no precedence in this case and there is nothing to compare it to, we can't possibly predict how Lynn's brain is going to respond long term. I felt like since the ammonia levels had only been down and under control for 3 days, we needed more time to see how Lynn would respond. This morning the neurologist came to me and said that they decided to do an MRI to see with more clarity what's going on in Lynn's brain. She explained that the CT scan is more like an X-ray, it tells you something is there, but does not give you a very clear picture. To do the MRI, they had to remove the bolt that was measuring the ICP, so they did. When the neurologist came out of the MRI, she said that it was "odd". Like that is any kind of surprise. The whole case has been "odd". Anyway, she went to consult with a neurological radiologist. I guess he's written the book on the subject. Then she comes back and starts asking questions about Lynn's sarcoidosis that he's had for 20 years. So in a nutshell, here it is. There is no sign of stroke or complications associated with stroke. However, there is quite a bit of abnormality in the white matter of the brain, however they don't know whether it is reversable or not. They are also seeing quite a bit of "stuff" in the brain matter that they are suspecting is sarcoidosis that is now in the brain. Until now, we were only aware of sarcoidosis being in the lungs. Lynn and I were aware that sarcoidosis can be found anywhere in the body, but it is most commonly localized in the respiratory system. They don't know how much of the abnormality in the brain is due to the metabolic illness he has and how much is due to sarcoidosis. So the obvious answer would be to treat the sarcoidosis, right? The problem, the normal treatment for sarcoidosis is steroids. Oops! Can't do that. That's what put him into the whole metabolic catastrophe in the first place. So the neurologist is going to consult with the doctors who are more specialized in the treatment of sarcoidosis to see if there are alternative treatments. We have been on the internet, and according to the Cleveland Clinic among other sites, there are indeed other drugs that are used to treat sarcoidosis when patients can't tolerate steroids. So they decided to replace the bolt in his head to monitor his pressures for a few more days, they have taken him off the sedation, and are hoping he will wake up. We have tried this before and his ICP rose, but we are trying again. I guess what I am saying to all of you is that I am cautiously hopeful. We certainly expected much worse news today. We still don't know how much of the brain abnormality is reversible if any, but we continue to be in awe at the love our Heavenly Father has for us. I can tell you without a shadow of a doubt that he is hearing all of our prayers. We are feeling his hand in our lives with every turn in his condition. I am so grateful to all of you who are faithfully praying, putting his name in the temple and on prayer rolls in all of your individual churches. I am so grateful for the messages of encouragement and hope to Lynn and I. The cards that have sent are so appreciated and are up on the wall of his hospital room. We even have a Jazz banner hanging up. So we will continue to count every blessing and pray for the best outcome for Lynn.
Thursday, February 25, 2010
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2 comments:
Our hearts go out to all of you.
Lynn please wake up soon.
Love, MaryJo and Robin
We had our meeting today and Pam shared about the new challenge Lynn is facing with the treatment of sarcoidosis. Everyone here at Weber in the School of Nursing send their best wishes and prayers that Lynn can experience improvement in his condition and shrinkage of the sarcoidosis in his brain. We are all concerned about you. We know that you must be exhausted but that it is importatn for you to be at his bedside. Let us know if there is ANYTHING you need. Running an errand, following up with anything at Weber, anything just call us. Things are fine at work, your students are doing well. Stephanie turned in her paperwork to Deanna so she is done with her hours. We miss you and you need to know that you are in our prayers.
Blessings on you....
Kathy Culliton
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