Ongoing Issues
(I haven't had luck with parking decks recently. Just last week, Braeden and I got "stuck" in a deck because my wallet demagnetized my exit ticket and I couldn't pay. Picture pouring rain, no attendant, and the number to call for help was the listed as the City of Durham. Luckily, it went much better than I thought, and the girl from afar was able to pull me up on her cameras and help me get out.)
Right hand and increasing atrophy-We have been testing the strength of his hand at home to ensure that his grip strength numbers aren't worsening. Over the past few weeks, his numbers have improved from 17 pounds to around 21 pounds. (For reference, his grip strength in October 2019 was 64 lbs). We happily accept this small victory. Any improvement is a positive. My concern is how much smaller and atrophied his right hand has become in the last month. I will attach a picture of his hand from 2/4, 2/18, and today. It is clear how much smaller his hand has become in just a few weeks. In bringing this up today, to the doctors, they all seem to agree that his hand is trying to catch up to the damage that has previously happened. They are all encouraged that his grip numbers are not getting worse. Plans are being made for Braeden to begin OT therapy with the focus on his right hand.
Decadron-These little steroid pills pack quite a punch. They cause non-stop hunger, weight gain and significant acne. They don't seem to keep him up at night as they were in the beginning. We are tapering his dose every few days. Hopefully, once these are finished, he will feel a little more normal. He hasn't had the expected "roid rage":yet another small victory.
New Concerns
Left leg/foot- Braeden reported to the team today in both of the clinics that he is experiencing left leg numbness and tingling that is new over the past week. Dr. Landi was called in to see Braeden and do an exam. After the exam, Dr. Landi said he was extremely concerned. (During the testing, Braeden had very little reflexes. We all know the little hammer that they use to tap your knee to see how far your leg will jump. His leg didn't jump at all. Also, picture the butt end of a butter knife (I don't know the official name, lol) being dug into the bottom of your foot. The expectation is that your toes will curl forward. His right foot was responsive, his left foot was not. The plan is for Braeden to have a consult with Dr. E. Smith who is a neurologist, and have him try to figure out what this all means. Braeden is also scheduled to have a complete spinal MRI in May. Up until this point, they have only being doing the "upper" spine. We could have the MRI done sooner, but it would possibly give the wrong "picture". Radiation could cause the MRI to show more inflammation than is actually there. Typically, you should wait 6 weeks or so before having a MRI after radiation. For now, we wait and if he notices increased tingling or clumsiness, we are to make them aware immediately.
CoronaVirus-Braeden had all kinds of questions for the team today. (We had listened to our local radio show talking about the CV on the way to Duke. Braeden said, if I get the CV, I am OUT, like I am DONE. I will be a resident of Duke for weeks.) The PA tried to ease his mind and told him that the population of patients that are getting the CV are 40 and older, very few children have been reported to have the CV.
It is really quite scary how quickly this all changes. I would have never thought we would be in this place 18 months ago. After his initial spinal cord surgery, my hope was that it was a "one and done."
Till next time.
#BraedenBrave
#MrUnlucky
❤️🙏🏻😎
ReplyDeleteKeep fighting. Never give up. Love you guys. 😘♥️
ReplyDeleteLove you!
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