Monday, November 7, 2011

Testing, testing . . .

It took me a bit to sit down and actually write this post; not because it was necessarily difficult, but because I just haven't found the time. =0}

Anyway, Isaiah spent the week in the hospital last month (October 3rd - October 6th) with a stay-over at the Ronald McDonald house Thursday evening (the 6th). No worries - it wasn't because Isaiah had another reaction, but it was because Isaiah's doctor wanted to observe him and run some tests (basically, it was what I had written about in my last post).

While I was hoping for an answer as to why Isaiah's reactions are so often and severe, there were no answers. He ended up having a small reaction, which ended the observation period and gave us a discharge from the hospital (his doctors - he had three - were trying to find a way to keep him). Since he had to be given meds to stop the reaction, the observation without meds was over . . . he made it less than 3 days off of meds. =0( This reaction wasn't as bad as it could have been, but without intervention, it would have been anaphylaxis (his lips and tongue were swelling, his throat was itching, he had a headache, a stomach ache, was gagging, he was flushed, and he had those lovely red spots).

Other than that, our hospital stay was an adventure where Isaiah was totally spoiled! =0) The activity cart came by Isaiah's room at least twice a day, but made it around more like three times a day. Every time the cart stopped by, Isaiah got something - a large board game, painting activities, a pillowcase, a toy, something . . . and the RMcD house gave him a large stuffed bear ("Teddy"). He could also order icees (which, when they're safe for him, are a HUGE treat for him). Yes, he had an icee for every meal! =0) On top of that, he had a 47" HD plasma screen TV (complete with cable) that also had movies, the Internet, and games. Mommy and Nai-Nai also had a TV, but it was more or less a 17 " screen with cable (no, mommies weren't excluded from the spoiling - I was given hot coffee and breakfast every morning). =0) By the time we left, we had a few extra bags to carry to the car. =0)

They also had an activity time where the kiddos could leave their rooms to go to the Children's Auditorium, if they were allowed/able to. While there, children could play the piano, play video games, shoot some pool, paint/draw, or play with various toys. They even planned a bingo and trivia time where the kiddos could win prizes - even the kiddos who weren't able to leave their rooms were able to play, thanks to their TVs.

Then, there was also music therapy, an awesome play room with a gorgeous view and a jukebox, and a special visitor. Yes, Isaiah got to meet . . . Ronald McDonald! =0) I don't know if Isaiah really knows who he is, but he was still excited to see him. =0) Ronald also brought Isaiah a toy
- they really go out for these kiddos. Then, there is the outdoor pirate ship and exercise time (Isaiah didn't get to participate in that one because of the heat).

In some ways, the hospital tried to make things as fun as possible to make the stay more of a vacation than a hospital stay . . . but there are still the IVs, the monitors, and the looks of pain and despair on little faces. There were so many heartbreaking stories - neighbors to Isaiah's room, to be more precise. Our stay on 8 South will not soon be forgotten.

As far as things with Isaiah go, his heart rate bounced somewhere between 56 and 148. Yeah, a bit scary. The alarm was difficult to get used to, but it would scare him when his heart rate would get low, which would make it beat a bit faster (usually around 70/80). Basically, I was told that he has an irregular heart beat, but it may just be normal for him. However, it never really acted up for them - he becomes very tired and pale when it acts up.

As far as the testing, the tests earlier in the week came back normal or the same as they have been (his eosinophils stayed the same and are still very high and some of his allergies have actually gotten worse - corn and dust, to be exact). He had more labs drawn before we were discharged Thursday evening (yes, evening . . . 7:30 to be exact). Hopefully, we will get those results sometime soon, but we're not sure when. The doctors are looking for a rare autoimmune disorder, so the labs had to be sent to a lab where the tests could actually be done - they were sent to a Jewish lab somewhere here in the states.

Just this past week, Isaiah had nerve testing done - last Tuesday. He had both nerve tests done: an electromyogram (EMG) and a nerve conduction velocity test (NCV). I am very proud of Isaiah and completely amazed at how well he did. Not only did he have to stay still (thank you, i-Pod), but he also had to stay still through all of the shocks. He didn't cry at all. He didn't even make a noise, apart from a small "ow" with the very last shock (nerve conduction tests use electrical shocks to test nerves, just in case you were wondering . . . and yes, they can be very painful, especially in the more sensitive areas). The doctor initially thought we wouldn't be able to do the entire test on Isaiah, however, Isaiah made it through all of it! The doctor smile and told us that he has had grown men jump, cry, scream, and threaten him because of these tests - he was impressed by Isaiah's willingness to just lay there and take whatever the test threw at him.

We were given the test results for the NCV and EMG. It looks like Isaiah has neuropathy. It's not severe, but it's definitely there. What does that mean? I don't know. We will have to wait and see Isaiah's regular neurologist to figure out what this means for him. What I do know, though, is that Isaiah's regular neuro seems to think that Isaiah does not have a minor form of CP, but something else (sheesh, is this some sort of a repetitive response???). Since Isaiah has no reflexes/hyporeflexia (except for a small bit in his ankles), CP is not causing the muscle and tendon tightness Isaiah is having (CP causes hyperreflexia/exaggerated reflexes). So . . . is all of this connected to everything Isaiah is going through???? No clue. Maybe the tests the allergists ran in the hospital will give us more information . . . or maybe the neuro will have an idea. We'll have to wait and see, as usual.

Since our trip to the hospital, Isaiah's body is finding it difficult to readjust (Isaiah had to be off a few meds for one of the tests). He has had weekly episodes, though we haven't had to use the Epi with these reactions. These are just the usual masto reactions - tummy pain, leg pain, nausea, vomiting, flushing, itching, mood swings, the red dots, swelling . . . I'm beginning to wonder if this is our new "normal". I surely hope not - I hate seeing him go through all of this. He's such a trooper, though, and manages to smile through it all.

I know all of this seems so overwhelming, but it really isn't. There is a lot going on, but it's nothing all that unusal for our household - it's our "normal" ("normal" just needs to be readjusted every once in a while). =0) It's not depressing, though it can be frustrating at times. Honestly, we just do what we have to and take one step at a time - as my mom says, we just live like we're supposed to . . . are all these things really supposed to bother us? There's no time to sit and think about the "what if's" or "if only's". From the outside, it looks like our life is just one glob of chaos. However, it's not that way at all . . . I can tell you, I would have no idea what to do with myself if things weren't the way they are! =0)

Even in the roughest times - the times where Isaiah is going through a reaction of some kind - it's comforting to know that in all that we are going through, God has never left our side and that everything happening is within His control. He's not going to leave us to deal with the uncertainties on our own - He's right here with us and He understands when things are frustrating and painful for us. I can't give you an answer if God had all this planned for us - trials and all - but I can say that He's not allowing us to go through this for nothing. I know that there is something in store, a reason why Isaiah and my dad (and my mom and I) are going through this . . . even though we don't know what that is. =0) There is actually a little peace in not knowing why . . . I may not want to know! =0)

Anyway, I will keep you posted as I hear back from the lab/labs and doctors. I am hoping that the tests will come back this week . . . I'm trying really hard not to be the psycho mom that calls daily for test results! ;0)

God is good!

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