Last Friday Rick took Hayden in for his second weekly IVIG treatment. I should have been routine, tylenol, benedryl followed by IVIG globulin. His blood results came back that his BUN (kidney function) level was very high and his breathing was still rough. He was admitted at that point. The doctors said there was no taking chances on post BMT patients.

Rick called me to let me know they were being admitted and I freaked out, the one weekend we had to be the best man, and maid of honor at Rick’s brother’s wedding! And Abby was the flowergirl, now what do we do? My parents were coming down for the wedding too so instead of them attending the wedding, they sat with Hayden at the hospital Friday night, and most of Saturday while we fullfilled our obligation.

Saturdays lab results came back normal so we didn’t have to do anything different. Perhaps the Friday’s count was misread or drawn out of the wrong lumin. Since the cyclosporin was given through the white lumin during his BMT stay, we always have to draw cyclosporin labs through the red lumin or the reading can be effected by an cclosporin residue in the line.

We were able to bring Hayden home late Sat. night. Rick, Abby and I waltz into the peds floor all dressed up in wedding attire ready to bring Hayden home at 10pm! It was a long day for my mom, Hayden and us but we all were happy to sleep in with no hospital noise!

I am beginning to think that Hayden is missing the nurses and just likes the window view from the peds floor!

He is now 13 months old, he is just about walking, he cruises the furniture, walls and anything on his way to his destination. He adores Daddy but always says “Mama” when asked to say “Dada”. You tell him “NO” and he shakes his bald head back and forth and laughs. His favorite toy is still his “cuddly” (lamb head on a very soft small blanket w tiny feet on the end) but the big wheel he rides and we push w/the handle is a very close second. We go around and around the livingroom and kitchen chasing the dogs and Abby!
He loves to be outside and go for stroller rides (with his mask on) and he  likes to eat meat and veggies. He will eat hot dogs for every meal if we let him. He spits out fruit, won’t eat it, even if we hide it in jello or pancakes! The best change has been wheening him off his expensive formula and introducing Whole milk to him, he really likes it. I still give him a bottle in the morning and in the evening for nutrients and fluids.

We have also switched Hayden from 250 mls of fluid (gravity drip bag) to 500 mls of pumped fluid each night. Last night Home Health showed us how to operate the electric pump to control his fluid intake. We have been giving the fluids at night so no body gets hurt trying to control that pole as he tools around the house and plays. We have had close calls with him pulling his tubing and pole over.
We give the fluids to him for 8 hours now instead of the previous 4 hours. Either way, we are up changing his diaper and making sure his fluids don’t run out. But now the pump beeps once it is done and we just have to flush him, and load his line up with Heperin and we all can go back to sleep. I think we will eventually start the pump at 10pm and that way it will go until we get up at 6am.

Marci tells us that Abby talks about Hayden at daycare nonstop, they are so excited to see each other when we get home! We can’t wait to bring him out with us camping, the zoo, the pumpkin patch and all the other fun places we take for granted.

This entry was posted on Wednesday, October 1st, 2008 at 10:10 am and is filed under Journal Entries. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.