Another busy hospital day.
Benson and Claire both did blood work this morning. Benson's comment, "I LOVE BLOOD WORK!" And he's surprisingly serious. He hasn't always been this way, but he's learned to trust the cream. We put Emla cream we put on his arms a half hour before and it numbs the area. He hardly feels a thing when they put the needle in! At first he still went crazy over the simple thought of doing blood work, but now he recognizes that it really doesn't hurt. He relaxes and handles it like a pro! Makes life a lot easier for all of us!
Claire still gets her blood work drawn through her dialysis catheter, but we just found out today that her catheter is infected with pseudomonas. They found that from the swab the took from it last Thursday. She had pseudomonas with her peritoneal dialysis catheter a while back and they were never able to get rid of it. They eventually had to pull out her catheter because it just kept coming back. From what I remember, it can be tricky to get rid of. But there are many different kids of pseudomonas....so we'll see how this one reacts to the antibiotics. I haven't heard for sure what they are going to do to treat it. Our doctor was going to talk with the infectious disease people and get their recommendation. We'll see. So far, the infection is only on the outside of her body/on the exit site where the catheter comes out. It hasn't gone into her blood. It could. But hasn't yet. We should see tomorrow how they plan to treat it. BUT the catheter line is still drawing good, so we'll see.
We met with the doctor later this afternoon and Claire's lab results look pretty good. Her hemoglobin has come up a little bit, from 8.3 to 8.6 so it's at least headed in the right direction. Unfortunately her liver numbers went up slightly too, which happens to be the wrong direction, but it wasn't a significant jump....just slight. Kidney function still looks great and everything else looks good. And I forgot to ask about Benson results. Woops. I'll check tomorrow!
Claire will go back in on Thursday to get her catheter dressing changed and her catheter flushed, but no more blood work this week! That will be good to give her body a chance to replenish her blood supply. They concluded that the reason her blood level was going down was due to a side-effect from one of the antibiotics she recently started. So they stopped that medicine and hope to see that level continue to go up now that she's off it.
Busy day. Nice to come home to freshly moped floors! What a great hubby I have. Now bring on the nightly ping-pong game!
Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.
Monday, March 29, 2010
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1 comment:
have you tried asking for a butterfly? They are really tiny needles, I know here (we're in winnipeg manitoba canada) at the children's hospital they only use them if you ask for them which we always do. Tony (he's 10) takes blood work like a champ but J'naya (she's 8 gets really worked up to the point she almost passes out. How did you find out about PH1 in your kids?
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