Limbo, but not really
So the whirlwind continues with Sam, Luke's little brother, double booking the sick kid slot and waking up with fever, ear infection, and croup. Inconsiderate. Yet precious.
But you aren't here for amoxicillin Let's get into it.
Took Luke this morning to get labs at Kosair Brownsboro. (Hot Tip: If you ever have to take your kid to ER or labs and its lower key issues, drive to this location. Anyone who has been in both will tell you they are like night and day. I don't know how extensive the care can get out there. They probably don't do brain surgery, but I am making things up at this point. Just go there if you have to/ can.) So we got labs and his white blood count still isn't good. For example SEGs which stand for segmented neutrophils (thanks Havens for the help!) are supposed to be between 30-55 and Luke's were 2 when we left the hospital last week and today... freaking ZERO. Gail, the nurse from clinic called and explained to me that we were going to hold the Afinitor for another week and then get another CBC. I'm sorry...A week? This was confusing to me. In the past we have always been very aggressive with getting him back on his meds. I mean as soon as he ate a Cheerio or smiled, we were ready to get it in his body. This was a change in philosophy that I just didn't understand. Luke is eating and drinking and smiling and afebrile... So we are holding his most powerful med because of some portion of this white blood count that I've never even heard of before (this argument is not that powerful. I know very little about white blood count. Well, not totally true. I know much more after the adorable intern sat in the hospital with me and gave me an intro to biology course after the first lab came back. The things we do to entertain ourselves in hospitals) So, why would we keep this med from him? Are we TRYING to see how many seizures we can give him? GEEZ...Then it clicked, we used to be preparing and working towards a higher dose/ level of Afinitor. That was our goal. Get him back on, get it back up. Hurry! Now our goal has changed. We are getting him ready and healthy for something much different. Yes, he is having a crazy amount of seizures. Yes, it may get worse, but our hope does not lie solely Afinitor only any longer. There is a shift. We aren't waiting. We aren't observing or monitoring. This time that we are playing with, this limbo, is not really a limbo after all. We are preparing for battle. We sacrifice in the present to prepare for the future.
No more pussyfooting around (what Dr. Krueger said to us the first time we got there= the first time Steve and I laughed in a month). Ok, docs. We will not pussyfoot...It is game on.
What a dramatic ending to a post. Should have stopped there but few things I couldn't work in...
1. Going down more on Sabril
2. Going up on Vimpat
3. To expound on possible elevated seizure activity- Pretty decent weekend considering med changes/ additions/ commissions. Was having about 6-10. This still sucks, but we were impressed with the lack of Afinitor in his body. Until... Last night he had 5 in 2.5 hours and tonight he had 3 in an hour. Now, these aren't ALL he had. But these are signs of cluster seizures which we have dealt with before. Clusters are like hiccups (I made this up. no one of any medical education has ever made this reference) once they begin, it is really difficult (for Luke) to get them to stop. This is obviously worrisome for the family because now we start to discuss the possible need for rescue meds (Ativan) which we haven't used in years. This knocks him on his ass and then last time we gave it to him I thought he was going to come out of his skin and then dig a whole through the floor, but it stops the seizures.
7/12/2016 11:33:28 am
You are an amazing mother! I am so proud of you! Prayers--
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Mother of two amazing little boys, one who just happens to be a TS warrior.