We spent another stay in the hospital. He spiked a high fever but nothing ever showed up.
Things are going. His liver numbers are down some. We aren't due up there until Aug 8.
He is still having his chronic problems. Coughing, runny stools, dry skin. Though the skin is getting better.
Going on two years and really feel we aren't getting anywhere. I am hopeful now, but it all can change in a day, hour, minute.
He seems to be getting bigger but his test showed he isn't absorbing. How long ago was it I told the PA and doc i thought that was the case? But now they decided it was their brilliant idea that he wasn't absorbing stuff. I do believe the PA and I discussed the day of his endoscopy. oh well at least it got done. I GuESS? He is still low in weight a mere 14 lbs.
Bob got switched to hourly so we are taking a 200 dollar hit which is why Tyler isn't getting some meds this week. First week we've been affected. Dylly needs to go to the dentist, school clothes need to be bought and I have to very sore aching teeth that need pulled. None of it will get done.
He is doing ok so I have to be thankful for that. and I AM this other stuff still happens tho.
I'm retiring from writing next Friday. lol Barely made a mark and I'm retiring. tough business. lol No, too much else going on.
Boys are doing so so. I'm amazed at how well they are helping each other. We are in a really rough time as far as a family but I'm proud of my family. We're strong
for now?
- posted by Peg Kay @ 29.7.05

 
So much has happened since the last entry.
He bounced back into the hospital and was septic which led ot yet another picu trip. then another two weeks in the hospital.
once we got out he seemed to perk up and his skin felt good and his stools were down to once a day and even formed.
But it is all down hill again.
His liver enzynes are up. over 400. they just keep climbing regardless of taking off the meds that hit the liver. so not only are his liver numbers going up he is now off meds that protect him from infection.
I'm gonna be so heart broken if he gets this far and his gvh is calmed and then this liver thing takes him away from us. im so scared of losing him.
he calls me nana and is talking like crazy. moving like crazy. He has really became his own person.
He is now on 17 hr iv which makes it hard he drug the line to its maximum and it was stretched as far as it would go so i try to pick him up and i trip on it. Causing it to be pulled from his netting. How do they expect him to be on that 17 hrs when he is moving but not old enough to know to take the iv back pack with him?
I'm usually frustrated, but right now I'm really scared. I feel a connection with Ty I cannot put into words. i'm so scared we will lose him. i wish and hope these liver numbers turn around. and he doesn't get an infection in the process.
please don't take my baby away from me. please
the boys birthdays went off well. they had a good time. they have been doing so great.
Bob is tired and worn out. I havent slept in three weeks insomnia hsa struck since Steve's death. Bob I think feels helpless. he wants to help so bad but doesn't know how.
struggling money wise what is new.
i love my boys I wish we could be happier or I could give them all what they need. stability.
i love you boys. we just have to keep fighting. there is still hope. HOPE
- posted by Peg Kay @ 6.7.05