Let me just start off by saying that I am so incredibly proud of our little man. He is one tough cookie! We left for Cinci on Monday because we had appointments starting early on Tuesday. Before we even went to Cinci the hospital sent me a schedule of all of our appointments for the week. So just like it said, we showed up at 8:15 for X Ray and then were planning on going straight to see pulmonary. Well, we get to Radiology and they don't have an order for us and it shows that we don't have another appointment til 11! I was getting irritated because this always seems to happen wherever we go. Nothing is ever right. The lady in Radiology was so nice and decided to investigate it for us. Turns out pulmonary cancelled our appointment and xray without even telling us! We went to pulmonary to get an explaination and they told us to just go ahead and come on back to meet with the dr. We had never met with this dr before and he was so nice and apologetic. He looked at Zion's xray that was done in August (obviously never looked at by anyone else!) because it showed that he was leaning to far over (from scoliosis) that his ribs were almost pressing on his lungs. So now we have to do cough assist on Zion twice a day on a different mode than if he was sick. When he's sick we use it and it inhales and exhales for him, we are only supposed to inhale for him every day and let him exhale on his own. That will help keep his lungs healthy. After pulm we went to see neurology, Dr Wong (ammaaaaazing!!!). She was so great! We love her! She pretty much just got his history and checked him out. She looked at his back and decided he needed another xray, sitting and laying down, and that he needed an MRI to try and figure out what were causing his seizures. We met with PT and a few other people but those all went great. They got us in for MRI yesterday, so Wednesday. We were supposed to be there at 1:00 sharp and Z was supposed to fast. Before going to MRI we had to get labs drawn. After 8-10 vials of blood being drawn we finally ended up in Radiology, again. Only to find out that an MRI machine had went down and they were behind about 2 hours! They took us back to get prepped hoping they would catch up, but no....we waited for about 3 hours in the back. We were getting up to leave when a machine finally became available. Thank goodness! Waiting in a tiny room with 2 frustrated kids is definitely not something I'd like to do again. Anyway, some nurses took Zoe for a walk so me and Paul could both be with Zion while they put him to sleep. For those of you who don't know, being put to sleep while you have SMA is very risky, things can go majorly wrong because their breathing isn't like a "normal" childs. So we were very worried. He did great though. Waking up was pretty bad, just because he was so cranky, hungry, cold, exhausted, and just sick and tired of people messing with him. They thought he might have to stay over, but about an hour after we finally got to leave back to the hotel. This morning we went in for the results. I figured they'd either find nothing or something that was causing the seizures. I was just ready for some answers. Instead, I got more questions. They did find something, but it wasn't related to SMA or causing the seizures. Dr Wong showed us the images and of course I really had no idea what I was looking at. She explained that there was brain tissue that was about 6 mm long going into his craniocervical junction. That was all blab to me. What in the world are you talking about? I was getting hot and very nervous. I heard her say "not really tumors" and "you need to meet with a neuro surgeon very soon". We sat down and she explained it some more. The part on the back of your head where it kind of "dips" in is where it is. There is brain tissue hanging down there and it's only a problem for people in contact sports or with weak muscles whose head can just fall back. So it's a major problem. That part of the brain is what controls the breathing and swallowing. If he were to fall and hit his head (which he falls all the time) he could cause brain damage. We have to get a head support for his little wheelchair and be very careful picking him up and letting him sit on his own, which is getting very hard for him anyway. We will hopefully hear from the neuro surgeon soon with an appointment.
Now onto his X Rays......It definitely shows scoliosis. :'( When he's laying down his curve is 21 degrees and when he's sitting up his curve is 46 degrees. We are to use his back brace as much as possible until we can meet with ortho. Which is going to be the same day as neuro surgery. Ortho will look and see if we need to go ahead with surgery. They surgery they would do is called VEPTR. It's where they put rods in Z's back and every 6 months they would extend them. I am hoping his back brace helps for awhile so we don't have to do this now, but I'm pretty sure all SMA kids have to have this done. Well, that is the news for now. I will keep everyone updated as we get information. Thank you all for your prayers. We are really just trying to think positively right now. Even though that is extremely hard at this point. Thanks again!
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