Hi friends and family. We had a last minute follow-up today with Sam's Neurologist in Peoria. This is not the surgeon, but the doctor who found the original diagnosis, monitors his sleep apnea, and keeps an eye on how his brain is functioning. This follow-up was scheduled for a few weeks from now, but had to be changed and we took a last minute opening rather than wait a lengthy time or see an assistant.
A few entries ago I had indicated that Sam's AHI index (how many times he stops breathing per hour overnight) was a bit out of whack. It has lowered from the worrisome highs we had seen, but continues to be a little higher than we would like. I have had many phone conversations with his neurologist about this and we can not come up with a good reason. We had him wear a monitor overnight that showed he was not having any lows in his pulse or oxygen levels. This indicates that while his CPAP is showing he is stopping breathing, he may not be. The only way to know for sure is another sleep study. The doctor feels that since he is not showing any other signs of distress, we will hold off on another sleep study for now. Instead, we are going to wait a few months. The neurosurgeon has indicated that by late March any improvements and healing from his surgery, at least neurologically, will be as good as it will get. At that time we will then have a sleep study with out his CPAP. This will show us if he still needs the CPAP or not. This sleep study will take place March 20th.
It is important to note here that while we would be thrilled and thankful if Sam's sleep apnea has been solved by his surgery, that was not the goal. The goal of everything he has been through was to keep him from having further damage to his brain. The possibility exists that some of the symptoms, including his central apnea, could improve, but was not the reason for the surgery. That being said, please pray that Sam's apnea has resolved and he could get rid of the CPAP. It would be so wonderful for him to be able to see a tangible benefit to everything he has had to endure.
The neurologist asks Sam to do a variety of things that shows her how his body and brain interact. In the beginning she saw some muscle weakness, uneven strength between the two halves of his body, and abnormal reflexes. These were some of the signs that led her to believe he needed an MRI, leading to his diagnosis. After retesting these things today, she said there may have been a very slight improvement, but nothing of significance. As I said earlier, no one necessarily expected improvement to these things, but it is slightly disappointing anyway. With this in mind I am being cautious about hoping that his apnea will have resolved, but I also know God can provide miracles. We will be content in whatever the end result ends up being. Other than that, the neurologist was thrilled with the success of Sam's surgery. She has received all of the notes from our neurosurgeon and was more than satisfied with the stabilization that was achieved.
Our next appointment (and milestone) will take place November 21st in Chicago with our neurosurgeon, Dr. Alden. At this appointment he will decide if we can start to wean Sam off of his neck brace. I am praying that this will be possible. Sam is VERY excited about the possibility of getting out of the brace, and I believe he would be extremely disappointed if not. If we get the go ahead, it will take about a month to wean him off completely while he regains neck strength. This means he may be able to be out of it completely by Christmas. This would be an excellent gift for him.
Overall, Sam is doing fantastic. He has no pain, is able to do all activities necessary to take care of himself, and feels good enough that I have to constantly remind him he still has to be careful and take it easy. Thank you again for all of your prayers. I will update you again after his Chicago appointment.
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