Wednesday, September 28, 2011

Wow, has it been that long???

Could it really be that my last post was in JULY?!? =0)

Just because I haven't posted, it doesn't mean that we haven't had much going on. In fact, for those of you who don't get to see posts on Facebook, things have been crazy . . . especially for the last 3 weeks.

Isaiah has had several bad days - more bad days than good, to be exact. Of course, there were three days that were horrible. Beginning three weeks ago, Isaiah's allergist from St. Pete called to discuss a few things . . . one of them being that she was concerned about Isaiah's counts increasing and the fact that the insurances are having issues with all of the meds Isaiah is on (basically, they don't want to cover the meds). She has been doing a lot of research concerning Isaiah and thought that it might be a good idea to do some testing . . . this testing would require Isaiah to be off meds for a few days to get an accurate count. Now, the test is a simple test involving a 24-hour urine sample . . . no biggie, right? Putting ASD aside, the no meds thing is scary and dangerous for Isaiah. Just to make the insurance happy, though, I agreed to the test. So, off of meds Isaiah went . . .

IT WAS AWFUL! The first day wasn't so bad . . . the second was worse than the first, but not too bad, either. The third day, however, brought on hives, flushing, pain, lack of appetite and nausea . . . basically, all of the symptoms associated with masto and allergies. By Friday, Isaiah was on the sofa completely sacked out and pale with an irregular heartbeat. So, off to the hospital we went. He was okay, but not great. He actually said he was hurting. His heart rate was high, but his blood pressure was stable and he seemed to be breathing okay. We ended up leaving the hospital with a new pink pan in hand and Zofran, determined NOT to use the Epi or any other antihistamine so that we could get through this test . . . however, Isaiah had begun vomiting (thanks to Zofran, though, the vomiting was subdued).

By Sunday (the beginning of the 24-hour test), Isaiah was feeling awful. He complained about an itchy throat and pain and carried the pink pan around with him. I knew something awful was going to happen, but I was hoping we could get through the test without having to intervene with meds (which would ruin the test). Well, it didn't happen. Sunday evening, Isaiah went into another episode of anaphylaxis. He was weak (he couldn't stand), he was swelling, flushed (red), screaming that has throat was itching (while trying to put his hands in his mouth to scratch), gagging . . . and then he turned blue. AGH! So, Epi Pen #1 was given . . . the adult-dose Epi. Within 5 minutes, Isaiah was wired.

When the ambulance arrived, they began to assess him - tachycardia, BP was okay, O2 sats were a smidge low. So, they gave him oxygen and we were on our way to the ER. In mid-transport, Isaiah began spacing out, again. He wasn't making any sense at all and then just stopped talking. He turned bright red, broke out in hives . . . everywhere . . . and then began having trouble breathing, again. His O2 sats dropped into the 80s (not bad, but not so good, either) and yet another Epi was given.

At the hospital, he was placed on monitors and given an IV . . . the usual. He was still covered with hives, red, very swollen (he couldn't close his mouth) and still on oxygen. He looked awful. He wasn't talking anymore, either. I felt so bad for him . . . he was so itchy and achy. His heart rate was all over the place - usually staying between 143 and 60. Yes, he was setting off alarms with that low number.

Oh, and there were those lovely red spots (the spots I like to call disco-light spots).

After Isaiah received all of his meds, his O2 sats stabilized, and his heart rate issues settled down, we were discharged. The test was messed up, so there won't be any results from it (though we did submit it to the lab).

The following week, things were still going crazy for Isaiah. He was back on his meds the very next morning along with a very high dose of Prednisone, so one would think he would have eaten everything in sight . . . no such luck, but he did have his appetite back (sort-of). =0} He was doing the same things he did while off meds (random hives, flushing, pain . . .).

Then, the following Sunday, it happened AGAIN. Itchy throat, swelling, pain, irregular heart beats, abnormal BP, and he turned blue . . . again. So another Epi and we were off to the ER. No steroids were given this time, since he had just come off the steroids that Friday. So, an IV and a few hours of observation and we were out the door. I must say, this episode wasn't as bad as the previous week's, but still. Poor kiddo! Three Epis in a little over a week!

His allergist called, very concerned, and said that she wants to admit him to the hospital for observation in the very near future . . . for at least 72 hours. Then, she said that if he has another episode before he is admitted in St. Pete, he will be transported from our local ER to All Children's.

Sorry, if I'm rambling . . . a lot of info. to share at one time.

Basically, the concern is the amount of times Isaiah has anaphylaxed (yes, my child has made that word a verb) over his lifetime and the amount of times he had to receive the Epi Pen (epinephrine, or adrenaline). He has had the Epi close to 30 times in his 6 years of life . . . that's a lot. They were all necessary, that's not in question. What is in question is what it has done to him, if anything . . . we're hoping that it hasn't. Epinephrine can cause heart damage and his heart is having problems handling reactions and seems to still be reacting to all of this. He is still having issues with a high heart rate that isn't steady - it beats quickly and slows suddenly, then speeds back up. It's a roller coaster of a heart beat and it totally scares me. This is new territory and I don't like it at all. He has been pale with those dark-circled eyes and definitely not his normal energetic self. Even today, he stayed on the sofa, "napping" as he calls it. He has been carrying around that pink pan saying his tummy hurts (VERY unusual for him, as he usually doesn't tell us about pain) and won't even finish his favorite foods. He hasn't lost weight (thankfully), but he just doesn't feel well, either. He gets so pale. He even tires out at dance and gymnastics - his instructors have noticed and allow him to take breaks (HE NEVER TAKES BREAKS!!!!).

As unusual as all of this is for us (especially, the length of time these symptoms have gone on), I know God has it all in His hands. I'm scared, but only because I don't want to see my son go through this, not because I don't trust what God has planned. I still hear that song every day in my head that talks about His blessings in rain drops and His healing coming through tears. He is still in control and still just as mighty as when everything is just peachy for us. He is the same - He is our constant and that brings me peace. He's not going to let Isaiah walk through all of this for nothing, and we're surely not going to walk it alone.

I wish Isaiah could catch a break, though. He misses out on so much. I would love, for once, to take him to the beach or the park during the summer or just go to the zoo. I would love to have an ice cream party or go to the movie theater to watch a movie before it comes out on DVD . . . before the movie is spoiled by someone else who saw it before us.

In all of that, though, there are things we do to have similar experiences. For movies, we buy it when it comes out. Expensive, yes . . . but well worth it. We pop popcorn and sit in front of the TV . . . lights on, because he hates the dark. =0) We occasionally make our own ice cream from rice milk, go to the beach when it cools down (he hates sand and he's afraid of the ocean, but it's still a nice experience and there are fewer people), and the park . . . well, we eventually get there, too . . . sometimes. =0} We have snuggle time and we play Wii or Play Station II together . . . and play lots of Angry Birds. We also have story time together and we make things to decorate the house.

Well, I will keep you posted on the happenings when he is admitted - we're still working out the details and making sure all the doctors and nurses caring for Isaiah are well-informed. I believe there will even be a few extra doctors (specialists) who will be called to give their advice and recommendations. For now . . . I have to get ready to go to St. Pete. =0} (Trust me, I will keep you posted with pictures) =0)

1 comment:

Liz said...

Wow Kelly , Lots of love and prayers coming your way . Do the Drs say if this is something he will outgrow ? Tell your mom and Dad I said hi :)