Monday and Tuesday both Jax and I really relaxed, and didn't do a whole lot, napped and just rested, which what we both needed!
On to our trip...
We had a great drive down with NO snow, rain, ice or tornado's which RARELY happens! We went to bed pretty early on Thursday night because we had to be up and out of the hotel by 7am. Jaxon's first appointment was called an Adrenal Stem test. They put an IV in and drew blood, then put something in which stresses his adrenals to see if they produce cortisol, which is something his body needs to be able to fight off infection. We got his results later when we met with his endocrinologist Dr. Lteif. She said he didn't pass the test, and his adrenals are indeed suppressed. Now that wasn't a surprise for either of us but it is helpful to know so that we can help them along, and make sure that he doesn't have an adrenal attack that could be fatal! So the plan of action on that front is to give him a daily dose of hydrocortisone, which will help his adrenals along without affecting his growth, or increasing his inter cranial pressure (which steroids can do).
The next thing he had after his adrenal stem test was his MRI-with MRV. He had to wait quite awhile to get into this one, but once it started he was done in no time. And once he got out we raced to Dr. Mason's appointment because we were late!
Dr. Mason's ( his rhuematologist) was the longest one of the day. He told us the results of the MRI...there is NO CLOTTING going on inside Jaxon's head! That was great to hear, but there is still evidence of increased pressure. Because his neurologist was gone that day we didn't figure anything else out on that front. But as far as his Still's disease we decided that we are going to make kinda a bold move here in the next 2 months that neither his doctor, Jer or I are very happy about. We are not going to give him his next 2 infusions (his March or April ones). Neurology and endocrinology are really pushing the idea that his Actemra (monthly infusions that he takes for his Still's) is the issue for his increased pressure. Dr. Mason, Jeremy and I really are almost 100% sure that this is not the case, but we need to make sure that it isn't, and his increased pressure is the most concerning issue at the moment.
I am afraid that he is going to be in a lot of pain, maybe not this week (since he is due today for his infusion), but probably this coming week, and continuing. I just don't want the fever and rash, along with the pain to come back. We know that even though his blood has been showing well, there is still smoke smoldering there (he still is in pain, especially in his hips, knees and ankles), he has had to get direct cortisone shots to his bad areas even with the infusion. There isn't going to be much we can do for his pain, other than ibuprofen, hot and cold packs, and rest. We will be going down for sure in early May to see what to do as far as his Still's disease goes. So that is it on his Still's (systemic JIA) front....
As far as his increased pressure goes we are waiting on neurology to see how they want to proceed. I am assuming that we would be going down to Rochester for a spinal tap and EEG soon, especially since we will be off the Actemra now. But it seems to take a very long time to get anywhere with them!
I will try to keep this up to date better as I know anything! But for now, no news means we are just sitting here waiting and watching, trying to find ways to live this new normal for Jax and all of us which is hard. We are so blessed to have lots of family and friends who are supporting us with prayers!!
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