Isaiah had a rough night last night. In fact rough is an understatement. It all started with a slight rash and flushing in WalMart while we getting our groceries. He didn't touch a thing and wasn't in an area where anything would have bothered him. I gave him Benadryl and he seemed fine after that. Once we got home, I gave Isaiah a bath, gave him his usual meds, and put him to bed. He seemed absolutely fine.
Then, around 1 or so, he started itching and squirming. That turned into moaning in his sleep along with drowsy crying . . . then he woke up and put his feet on me trying to get comfortable. That turned into him grabbing me and vomiting. It was out of the blue! His spots of rash turned bright red and grew in size (along with a few new patches appearing). I, of course, gave him more Bendaryl and watched to see if he needed an Epi. He continued vomiting (and begging me to "go doctor please"). It broke my heart! So, we went to the ER at 1:45.
They took him back very quickly. His BP was low and he was extremely pale with bluish-gray lips. He was mostly responsive (he would look at you, but not necessarily say anything to you). When the nurse asked him what hurt, he pointed to his tummy, head, and legs and said, "it hurt." =0( (we have been working on the what hurts question) When they gave him the IV, he didn't even flinch! No tears, no emotion, he just sat there! I don't know if he was being even more brave than usual or if he was just that sick. He got the usual allergic reaction cocktail (a med like Benadryl, more Zantac, and Prednisone) along with some fluids. Oh yeah, he also had a shot of sodium chloride to stop the vomiting (did I get that right???).
We were in the ER until about 5 or so, when they released us - the doctor said that I probably knew what I was doing by now. =0) Nice guy . . . he actually knew what Mastocytosis is! That's good to know . . . maybe all of Isaiah's reactions from now on will happen when people like this doctor are working! =0) Anyway, Isaiah thanked the doctor for making the "icky go bye bye." =0)
Sorry this is all broken up and close to unintelligible . . . I had no sleep last night because I was checking and praying over Isaiah the whole night. It's scary that reactions can actually happen at night, while the child is sleeping, while you (the parent) are sleeping! I'm so glad that I wasn't so asleep that I couldn't help him. I am also glad that his reaction wasn't as bad as it could have been. The doctor said it was all the meds in his system . . . I say that God was watching out for Isaiah.
Today, Isaiah has done well, apart from another rash on his face (which can be expected . . . sort-of). As long as we can go 24 hours without another reaction, Isaiah will be good. We still have a few more hours to go, so please pray that he does fine. His speech went from the improved state it was yesterday to being back to the way it was on Saturday and Sunday. The only difference is that it seems to come and go today - some things are easier to understand than others. On Saturday, nothing he said was easy to understand.
Well, since my brain is suffering from lack of sleep, I'll only write a bit more to say that our appointment at All Children's is still on for Friday. We will leave tomorrow for a 3-hour drive to St. Pete. I will keep you guys posted (as soon as I can, anyway). Keep praying for Isaiah (and thank you for your prayers)!!!!
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3 comments:
I'm so sorry--what a crappy night! Gavin always sleeps with us--his bed is about 2 feet from ours, but he is mostly right in between me and Tim. He is such a snuggly little guy, he cant even handle the thought of being alone! : )
It makes me and Tim feel much better knowing that whatever happens in the middle of the night, he is inches from us.
I wanted to share somethhing with you...I dont know if you know this or not, but I am wanting to pass along what our masto researching doc told us.
If the anaphylactic reaction starts the way his did last night (no respiratory complications yet), you should use the epi pen and you would spare yourself the ER trip and all the excess suffering.
Besides risking that it progresses in transport, it makes him feel better faster.
Often times if the reaction did not progress to any kind of respiratory complication, the epi shot at home is sufficient in controlling the masto reaction, when given with the right rescue oral medications (*note this is different than an actual allergic reaction).
We immediately give Gavin the epi pen, then we follow up with 200 mg of gastrocrom (2 ampules), 150 mg of zantac, and 37.5 mg of benadryl minutes after. Even if he vomited, the epi immediately reverses it temporarily, so if you give the meds in that 20 minute time frame, by the time the epi wears off, the other meds have kicked in. Apparently, many masto sufferers are in safe territory after that.
It works really well for Gavin and we have never had to go to the ER for this.
We also have the added benefit of having a central line access at home. After giving him the epi pen and the other meds, I hook him up to the fluids and it makes it that much better. We will be getting rid of it til next summer, but this past summer it was such a Godsend!
Anyway, hope this helps and (((HUgs))) I know how horrible it really is.
Oh Kelly, my heart just breaks for all that you are going through. We're praying that all these horrible reactions will soon be a thing of the past, that complete healing will be manifested in Isaiah. Praise God for relief from that last episode. Keep us posted.
Poor little guy and mama. I'm so sorry to hear about his reaction. I just wish these little guys wouldn't have to put up with these things. I'm glad to hear that the doc knew about Masto though, that is always a bonus.
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