Day 44 (April 28)
White Blood Cell: 4.5
ANC: 3.1
Platelets: 82
It’s so fun to watch her platelet count not go down. I mean, it went down, but only by 4,000 today. That’s no big deal when it’s in the 80s. Haley had a fairly decent night, and took her medication well. I was thinking that when haley’s sleeping in the pak-n-play, it will be quite difficult to administer her medication without waking her up.
Today was all about getting Haley to take her meds by mouth. So far, I have been able to mix one of her anti-nausea meds, the anti-viral, and the folic acid into her bottle. The Tacrolimus she almost takes well (by well I mean she doesn’t immediately vomit). They won’t make her take one of the drugs so long as she takes a spoonful (ha) of yoghurt. They discontinued a fwe of her meds that she just can’t keep down. The irony tonight though (it could be the funny thought of the day, but it’s not so much haha funny as hmm funny) is that anytime I tried to give her the anti-nausea med, she vomited it up (you can’t mix it into her formula because the taste is too strong). She does really well with it in an IV and it stops her nausea almost completely.
It was the last night in the hospital, so I just held her and cried. I looked at this kid who’s giggling when I twirled her around, and think what an incredibly brave girl. I told her how proud I was of her, and that there’s a long ways to go, but all she has to do is not get sick for an entire year and we’re golden.
Guest today was Grammy, who must have done 10 loads of laundry to keep up with Haley’s “output.”
Today’s funny moment was Anna, who said, upon my return from the hospital, said, “Are you my Mommy?” OK, it wasn’t so much funny as heart-wrenching, but it was either that or Haley vomiting up her anti-nausea medication.
Glad to hear some of those medications are getting down and staying there. It is weird about the anti-nausea stuff. That really needs to be better tasting. Hope this night is a good one and that you will be good to go in the morning. We look forward to hearing about a successful transfer. Lots of luck to you all!
April 29th, 2007 | #
When Anna asked, “Are you my mommy?” You should have answered, “No, Im a Snort” (Get it????)
April 29th, 2007 | #
You are all brave and your family and friends are proud of all of you. There is a great book called Are You My Mother? by P.D. Eastman. I was reminded of it when you shared Anna’s comment. I’m glad you had a moment to let the tears come. There’s a quote I love: “Tears are the safety valve of the heart when too much pressure is laid on it.” love,
Cristina
April 29th, 2007 | #
Tansy, thanks for the update. I am overjoyed by the fact that Haley’s platelets are doing their own thing. You must be thrilled to pieces.
This may be a small-town Oklahoma pharmacist thing, but my Dad was nauseous this weekend, and the pharmacist compounded phenergan for him to put on his wrists. (Are you all laughing in Manhattan?) Apparently, it worked like a charm. It’s hard to imagine that they wouldn’t be doing this if it were okay, but we’ve learned that it doesn’t hurt to ask, right?
Cristina, I hope you don’t mind that I took your idea about the PD Eastman book and ran with it. Anna will have it soon.
Thanks for the beautiful visual of you holding Haley and telling her how brave she is. We agree!! I’ll be thinking of you all day as you make your transfer. love, Dana
April 29th, 2007 | #
tansy,
so thrilled to read of haley’s platelets moving along on their own, and sounds like you are getting the medicine thing down. best of luck in the transition, you guys must be exhausted from cleaning and moving and preparing. we are thinking of you and hope haley enjoyed her breaths of fresh air on this beautiful day. –seema
April 29th, 2007 | #
As I read all the comments being sent by you and to you and Haley on a daily basis, I can only say that I am BLOWN AWAY by the wonder of it all. The love, courage, good wishes, good ideas , support and more that goes back and forth on this web site daily is a true testimony of the human spirit to want to help heal and HEAL IT WILL. You are amazing and you are surrounded by amazing relatives and friends. Take small steps and lots of deep breaths to help adjust to the new environment. There will certainly be alot of people to help you along the way.
Looking forward to seeing you and playing with Haley outside the hospital setting. love-Aunt Bea
April 29th, 2007 | #
Tansy,
Good luck in the transfer! Don’t worry Anna and Haley will know what an amazing mommy you are!!!!
Hugs,
Lona
April 29th, 2007 | #
So please tell us, Tansy, can you and Haley takes walks outside? Your daughter has ‘selected’ the perfect season to be freed. Surely the Springtime renewal of all life will contribute to her healing, and your coping. It will be so wonderful to hear about Anna getting to know–really know you and her sister again, even with all the Purell. I wouldn’t be at all surprised if the freedom to be more mobile greatly reduces Haley’s nausea. Is she allowed to crawl and stuff on the floor? I am eagerly looking forward to your next blog entries.
Here’s to only good, (ok mostly good) reports.
Linda and Yossie
April 30th, 2007 | #
Tansy, I guess Anna asking if you’re her mommy is better than when Noa says to me (when she’s mad) “Your not my mommy”–sorry kid, pretty sure you’re stuck with me!
Can you post the address where you’ll be staying when you leave the hospital. (or if posting it isn’t a good idea if anyone reading this has the new address can you email me directly–dana you seem to have a heads up on where to ship things! thanks!)
love, heather
April 30th, 2007 | #
So happy for all of you that you will be making the transition out of the hospital.Try to be patient with yourselves for this too is emotional and like many transitions takes time.What pops into my mind is the “shehechayanu prayer”-wish I could type it in Hebrew- it may be so appropriate at this time.Looking forward to more updates in this new stage.
April 30th, 2007 | #