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We have finally gotten moved over to the floor. Oh, it feels so much better. Joey is now in room 318 and can have visitors over the age of 12 and healthy. We're looking forward to hopfully seeing some people, but if anyone plans to visit, you'll need to gown up to come in the room or agree not to go anywhere else in the hospital. I think it irritates me because he's tested negative for MRSA for 3 months now, which meets the rule for how long he has to be negative, but its only been 2 tests and he needs 3, a month apart.
Lots has happened since the last update...
Fu ll bone scan, not just legs. CLEAN. So no bone involvement.
PT came in. Joey does have SOME delays, but they are minor and easily corrected. PT said if we do these exercises she gave then he should be walking within 2 months!!! He has the leg and trunk strength, its the knees and hips we're working on.
Case manager came in. I told her my frustration about not being allowed to even shower, or eat. They are working on the food issue and they have agreed to let me use the room shower, as long as we don't use it for Joey. Well, Joey has his port accessed and is too much of a water bug, so thats not an issue.
Dr. Rubin came and talked to us as well. She doubts the eye sty is LCH related, but agrees its quite a coincidence that he had it at admission, went away a week into treatment, and its suddenly back again. SO she is having opthamology come see him and do a complete exam. And we're also workign on getting pulmonology in to see him as well. Either way, we have a pulmonology appt on July 27.
We talked about the treatment plan right now. We're going to do 2 rounds of 2CdA then scans. If its improving, we do 2-4 more rounds. If its not improving as well as it should then we add the AraC. It's so hard to wait that long to see if its working, but I'd rather wait to avoid more radiation exposure from the CT scans (did you know a CT scan is 400X more radiation than a x-ray!!!).
Joey has been munching away on everythign he can get his little hands on, most of the time. I don't know if its he never had any nausea or if its the fact they have him on zofran every 8 hours, but whatever it is its nice to see him eating. He now has his playmat, and high chair. Child Life brought in a PS2 and DVD player for the big kids, and because of Joey's isolation, they stay in the room until he is discharged. So I'm even going to enjoy them, to stave off the boredom.
Don't know when I'll be able to update again. But tomorrow we will hit our Hump Day her at CHOC, 1/2 way to heading home, hopefully.
Oh, almost forgot the BESY news we got today, besides the clean bone scans of course (which also show no fractures!)...
IF Joey does well with this round AND IF he needs no blood product AND IF his counts are high enough next round MIGHT be done outpatient. Lots of if's and we won't know until closer to time, but Dr. Rubin said she's really impressed with how amazingly well Joey is handling this, she expected worse and we'll see how things go before deciding. It all depends on Joey and his reaction over the enxt few days, and his blood counts right before next round. And of course what the doctors are comfortable with. One of the reasons they wanted him in was his age, so that could play against him again, but lets hope not.
Oh, and his last blood pressure was a bit on the high side, so please pray it comes down...
Thanks to Jaidynsmum for my siggy!
Proud former foster parent to a teen. Waiting on our next call. Proud Aunt to 22.
Proud mommy to 7 angels. Survivor of 4 failed adoptions (5 kids)