Tuesday, May 24, 2011

This post has the potential...

...to become very whiny. So, I'll try to frame things in a positive light.
(To be clear, both Micah and I are sick)

1) Micah didn't get admitted to the hospital yesterday (or Sunday) :)
2) His chest X-ray was clear
3) We have a great pediatrician
4) I have somewhat of a voice back (lost it Thursday!)
5) I can at least answer the phone now. Sorry if you got ignored over the weekend!
6) Micah's fever has been down for 12 hours straight
7) I'm healthy enough to enjoy a little bit of time to myself this morning.
8) I got a free soft drink this morning, because someone just decided that's what I needed! :)
9) Enjoyed a nice trip to the zoo Saturday, as a late mother's day present for my MIL. Pics later.

Tuesday, May 17, 2011

Just another update...

We're plugging along. We went to Cincy yesterday and finally got his drain out. It had been in for 6? (can't even remember) weeks! His skin seems to be closing up nicely. We went for bloodwork and a check up, basically.
Other than that, we enjoyed Mother's Day at my moms house with the family. We're also planning on going to the zoo this Saturday, yay! Someday I'll get pics up, they just can't seem to get off my camera!

Update on the update :)

So, we have almost all the bloodwork back (thank goodness for Cincinnati's new online feature!)
Overall, the verdict is mixed. His IGG (immune related) is back up where it should be after the IV he had two weeks ago. This is to be expected, as the IV is supposed to work for at least 3-4 weeks. BUT (and there's always a but, it seems) his cholesterol is just getting further and further out of the realm of normal. We didn't have a baseline before the meds unfortunately, but even after 1 week of meds it was high (203) and now, after a month it is 232. I just hope it stops rising because we've hit the right amount of the drug in his system. His LDL cholesterol and trigylcerides are increasing steadily as well. I hate this, because I've been told there's nothing on my end that I can do. Even so, I'm trying more of his blended diet, hoping his body can deal with that better than the pediasure.

Friday, May 6, 2011

Such a big difference

We spent about 4 or 5 hours yesterday afternoon in the ped's office and Lutheran. We got some of his bloodwork back (they talked to Travis, not me). Now, here's the difference between us.
The note he wrote on the fridge said: Immune system stuff low, hematocrit low, anemic. Now, to me, that's about 1/10th the story. I'm a numbers girl and it's taken all I've got within me not to call back and get the whole story.
At the hospital they ran bloodwork and gave him an IV antibiotic. Poor kid just keeps getting stuck. So not fair. The IV antibiotic kicked whatever he has, at least for the time being. He's getting put on another one this evening (that's 3 antibiotics in the last two days!).
This was our week: Sunday afternoon, drive to Cincy. Monday, Hospital from 830 to 4. Drive home. Tuesday: Ped's office. Thursday:Peds office and Lutheran. Today, I just have to pick up a prescripton. Easy enough.
Well, he's screaming so I should probably go.

Tuesday, May 3, 2011

So, we finally got out of the hospital at 4pm and headed home. His IVIG went off without a hitch once it finally got going. No adverse reactions at all. But, we are faced with a new problem... The kid has high LDL cholesterol and triglycerides. (Inside I'm saying, are you kidding me! Okay, maybe I said that outloud). The kid is in the like 10th percentile for weight. The kid gets basically JUST pediasure. Everyone is scratching their heads, needless to say. It really feels like everytime we do anything, something else happens. The rapamycin can cause this, but it seems unlikely that's the only problem (it was high after a week of a starter dose). Does the kid need lipitor or something? He's not even two!
So, his IGG level was below 140 (supposed to be at least 350-400), not 240 like I thought. Not only that, this week it was 91. But with the IVIG it should be back in happy land, at least for a month. I'm really starting to pity these doctors trying to keep everything straight.
I have a tendency to play out the future in my head, but I can't even do that anymore. It used to be "do this, then this, then this..." you know, something that resembles a plan.
Here's where I sigh dramatically.

Monday, May 2, 2011


So, it took three tries to get the IV placed. Have I ever mentioned that I HATE that part more than just about anything. So now, everyone's cranky. Finally IV team Sam got it (I write it here so I can look it up later). They have to give him tylenol and benadryl a half hour before the IVIG. So, the infusion won't get started til 11:30 (it's a 4-5 hour infusion).
So, not only was his IGG (immunoglobin G, a marker of one type of antibodies) low, it was off the charts. The nurse had said "below 240". What I inferred was it was like, 238 and she rounded. What she meant was that the hospital that tested it only went down to 240, and his was below 240. Yikes. So we really don't know what it was. And so it goes.