Archive for March, 2010

On the Rebound

Tuesday, March 2nd, 2010

JoshinBed

We’re still in the hospital, but as you can probably tell from the picture, Josh is feeling much better today. Looks like just one of those 24 hour deals. I’m going to have him post something later today, but just wanted everyone to know he’s doing fine.  Thanks to all for your prayers, notes of encouragement, support…  We are blessed with some very special family and friends.

Clark & Julie

Another Curve Ball

Monday, March 1st, 2010

At about 12:30 this AM, Joshua woke us up to tell us that he “couldn’t stop throwing up”. He was shaking a bit too. He got back to sleep but was up for another round at 2:30. He also had diarrhea.

So after a pretty lousy night’s sleep, we headed over to the NIH clinic for his regularly scheduled blood draw and to have him looked at. After an examination and the discovery of a 102 fever, they felt it would be good to admit him and get him some fluids and antibiotics. So much to our surprise, we’re in the hospital. :)

Josh has slept most of the day and he is feeling and looking better. This definitely feels precautionary, but we’re grateful for that of course. They gave him some IV fluids and he’s also getting his monthly IVIG treatment today (a couple days early) to give his system a boost.

Unless we get another curve ball, it sounds like he’ll be here today and tomorrow and hopefully released on Wednesday. Only time will tell I suppose.

Before I could post this, the docs walked in with some updated information. The long and short of it is that conversations are ongoing with NIH docs and the docs at Duke (where Josh was originally treated) to try to determine what the best course of action would be. Sounds like the doctor who developed PegADA isn’t wild about the idea of taking Joshua off it. We haven’t heard yet from Joshua’s Duke doc or from our UW doc. There really isn’t any precedent for our situation, so it seems likely that there will be a lot of dialogue and the choice isn’t very likely to be “clear cut” in doctor’s eyes. It also seems unlikely that we’ll make any quick decisions. There’s certainly no urgency here.

So keep us in your thoughts and prayers, both for a quick recovery now and clear direction for Joshua’s future treatment.

Thanks!