It's been a long week

Isaiah as been fighting a 102 fever since Monday. This is so unlike him and it just makes me nervous. I think I take for granted that he is typically healthy other than his cycles so when he gets sick it makes all of us a bit nervous. Before Avery came along, I spent many of nights in the hospital with Isaiah. I cannot even imagine going inpatient with him at this point b/c he would have to be heavily sedated b/c he is such a wild man. Last yr. he needed IV fluids and the pump never infused b.c he was moving so much. So you can only imagine him inpatient.

Frankly, I am finding the boys pediatricians completely useless. They have two different ones and Isaiah's is afraid to do anything with him and Avery's (well lets just say I am disappointed). I called Isaiah's dr. b/c he was on day 3 of fevers and wincing in pain and it seems to be strep. I looked in his ears and noticed he has fluid in the right ear and told the dr. and he confirmed. He did a rapid strep and it was negative and a 24 hrs which we are still waiting on but nothing else (like a urine culture or bloodwork). You really don't understand what it is like to take Zay out for appts. I am surprised I don't have black eyes. First of all, he HATES going to the drs. and secondly he always poops through everything and completely kicks the crap out of me. He sure doesn't mean it b/c he has alot of involuntary movements but boy do I need a few glasses of wine after a drs. visit. And here we are day 4 and he is still running a fever and he seems to be getting worse. And a nasty nurse with an attitude calling me back and talking to me like I am a two yr. old. So needless to say I am frustrated.

We have a long day of appts. with both boys tomorrow and I am totally dreading it. Isaiah doesn't feel well and it is late in the day and it is sooo much work taking both boys out all day long. Especially when they are not getting any enjoyment out of it. But I really have to go b/c Isaiah needs some work on his medications and so resolve on his retching spells.

Avery went for his first Sub Q IVIG (his immune infusions are now being done under his skin as opposed to using his port to cut down risk of line infections) poor kid has to get four needles that run with fluids for over an hr and half. Surprisingly, he did great with only welts on his legs and no other reactions. The good thing is he can now get these done at home weekly and not have to go to the hospital to do it. I swear I should automatically get a nursing certificate for all the knowledge I have with Avery's procedures. Hopefully this will help him to keep up his immune system and keep us home for much longer stretches of time.

So please say a quick prayer that Mr. Isaiah recovers soon and Mr. Avery doesn't get what he has.