Day 103!
BUN 35 (high again)
wht cells 7.4
Hemoglobin 9.9
ANC 5,000
Platelets 260k
Creotine .5 (up from last test, not bad though)
I so wanted an update on Day 100 (Monday) but forgot to write. Tuesday’s appointment went well. Doctors see little sign of redness from the mild Graft vs Host disease. It is very mild but still has to be watched. Rick brought up the redness that we have been seeing on only his hands. They get very red at times but in isolated areas. We will just continue to watch that. We started to decrease his Cyclosporin med (steroid) 5%, so that calculated out to .7ml in the morning and .8ml in the evening. I really can’t wait for that med to be done with, he really has a temper on that.
We were excited to see the hickman lines working well when Bethany (BMT nurse) drew blood for labs. Thank goodness we didn’t have to wait around the hospital again to unclog his lines. We will get the results of his 100 day engraftment tests in a couple of days/weeks to show where we are with the engraftment. If you recall our last engraftment showed Hayden was 100% engrafted, but with 5% of his old cells still lingering. That is acceptable, but they do monitor through the first 6 months of post transplant.
The BUN level is high again (liver function), so instead of me giving him fluids every other day as we changed it to last week, we are back to every night. That means he wets through his pajamas every night and even less sleep for me. I usually wake up at 2am to change him and his bed while Rick holds him, but last night he woke me up at 12 just soaked and screaming. You would think he is in pain the way he cries! He is just mad he is awake and not sleeping I guess. So I will try some overnight diapers for him to see if they absorb more. He still only receives 250ml of fluid, so it isn’t alot.
So this week, our million dollar baby’s milestones are bouncing on his Fisher Price jumping Zebra, he sits on it and it bounces up and down as he moves his legs. Thank you Karis for donating that fun toy to Hayden, he loves it. Now we inherited an even bigger horse that rocks and jumps. My parents’ neighbors, Tammy and George passed onto our kids their flexible rocking/spring horse (Nicki) so last night the kids were having a great time riding their horses! Thank goodness for indoor toys! Thank you George and Tammy for the horse, Abby loves it!
Other milestones Hayden has been working on are standing and playing at the same time. He plays at the play kitchen with pots and pans, opens and closes the doors, puts things in and out. It is just so cute to watch him. We are still working on his clinginess, I think that will come with age too.
This weekend we have two HUGE pumpkins to carve and a couple of small ones too. As long as we scrub down the pumpkins we can have them in the house for him to touch. One pumpkin is as big as Hayden is!
Abby will be going trick or treating again this year and Hayden is stay back at home with one of us. Abby plans to wear a black hoop dress borrowed from her second cousin Zoe (thank you) which fits perfectly! I think it is a princess or witch!