Day 43 (April 27)
White Blood Cell: 4.6
ANC: 3.1
Platelets: 86
Moving day came and went and we are still here. Last night, she vomited all of her medications. Even as the decision was made, we were still packing up the room. They will see how she takes her medications today. They are also compromising, they said, and seeing if Haley will do OK without certain medications. She was supposed to be on 7 meds (two of which are vitamins). Now they’re going to see if she does better with only 4 medicines. Of course, two of those medicines are taken 3 times a day. The difficulty with which she takes the medication is making the dressing changes like a walk in the sterilized park.
Also, she’s been sneezing a lot, and although the doctors aren’t concerned yet, I think they’re going to end up taking a culture to rule out infection.
It has been an emotional roller coaster. It’s hard enough to gear up to leave, then you don’t, but now you don’t know what the new timing is. They project possibly Sunday, but it will depend on Haley, who now has every trick to keep even the hand that holds the medicine far away from her face.
Guest today was Grammy and Uncle Yak (even though he was there to move stuff to the apartment).
Fun moment of the day is looking at her count calendar and seeing her platelets stable enough not to need another transfusion.
Funny moment was a note on one of the elevators that read: Elevator Rehabilitation Project.
Dear Tansy,
Hurry up and wait.
How frustrating! Are you all packed up and just sitting there? I’m sorry to hear that Haley threw up all her meds. Sometimes it’s just one long hour at a time, but her counts look good and that is welcomed news. It no doubt does feel like a roller coaster ride. The important thing is to hold on tight…and please, stay away from elevators that are being rehabilitated. lots of love and hugs…cristina
April 28th, 2007 | #
I really missed you today (Shabbat) at the park; I know it will be a long time until we are there together again, but I can see it! Give specail hugs to Anna from me and Tamar!
Haley clearly has a high IQ, as her medecine dodging skills are demonstrating; as she feels better, I hope her resistence to taking the medecine will diminish. I continue to be excited by the platelet count. Hope the next week is a better one!
Shavua tov,
LIndsay, Norm and Tamar
April 29th, 2007 | #
The counts are all up! So that’s good news at the top. And even though the roller coaster of go/stay is wrenching, I can’t help but think that it’s a blessing that Haley’s system stopped the moving process before it was complete. Having to go through the moving process, then having to go back to the hospital would have been a lot to bear. So, as odd as this sounds, I think Haley has great timing.
And such a spirit! She gets that stubborness from you, and while it makes medicine-giving awful, it’s one of the things that is sustaining her and you.
April 29th, 2007 | #
It’s great to see those counts inching upwards. That must be some consolation to the frustration you must feel not knowing quite when you will be leaving the hospital. Friday evening we learned from Savta that Haley was still hospitalized. My thought was at least you don’t have to face being alone with Haley outside the hospital for the first time on Shabbat. Hope she doen’t have an infection and you will be able to leave soon. On the other hand, Haley seems too smart to allow those medications to pass through her lips. Can’t think of a single way to out smart her. You’d think by now someone would have thought of a way to get children to take medication without feeling you’re fighting them all the way. Then again, maybe most babies haven’t figured out how to keep that vile stuff out of their mouths like Haley has.
We are sure it will all work out. We look forward to a quick resolution to the situation. Love of love to you all.
April 29th, 2007 | #
I agree that her feistiness when it comes to her medicine is actually a great sign. Ellie is super feisty and stubborn too and when I’m at my wits end, I try to remember that this spunk will serve her well. It’s already served Haley so well, and will continue to do so in the future! But it sure is presenting some logistical problems today, isn’t it?
I’m sure you’ve tried every trick in the book, but just in case, this worked for Ellie. I realized after a week of fighting with Ellie over her antibiotic that if I actually gave her the syringe first and let her play with it, stick it in her mouth, etc. instead of coming at her with it, things went more smoothly. I fear though that Haley is so anti-just-about-everything-in-her-mouth that she won’t have any interest in playing with it/ sucking on it. (I’m reluctant to make any suggestion because I gotta think you and her docs are the best medicine-givers on the planet!) Anyway, maybe her stomach will feel better soon (I wonder if the iron from her vitamin supplements is upsetting her tummy) and she will be more amenable to her oral meds. Listen to me acting like I’m a doctor!
Okay, I’m glad you’re still there because it seems like Haley needs a little more time to get her little feet under her. Please disregard all silly medical comments above and just know that I am thrilled beyond words about her counts- especially those platelets! Wow! love, Dana
April 29th, 2007 | #