Haley’s Giggle

White Blood Cell: 6

ANC: 4.5

Platelets: 108

That 108 almost made up for the otherwise extremely stressful day. We left the hospital today. It was incredibly difficult to say goodbye to a place that has cared for your baby so intensively, everyone from the head of the department to nurses who never even had her as a patient. For the first time in 8 weeks, Haley is not tethered to anything. For the first time in 8 weeks, she has not just fallen asleep only to be woken up by the nurse’s assistant to take her vital signs. For the first time in 8 weeks, there is no night nurse to watch over her. For the first time in 8 weeks, there is no call button. For the first time in 8 weeks, there is no alarm to mute from one of her machines. For the first time in 8 weeks, there is no chair to pull out. For the first time in 8 weeks, I am not sleeping with gloves, gown, and mask. For the first time in 8 weeks, Haley took a breath of fresh air.

Also for the first time in 8 weeks, Anna and Haley saw each other. It was quite a fun reaction, the two of them had together, and they got along great. That is, until I picked up Haley. Then Anna went ballistic. Hopefully, that will blow over, and Anna can come and go and feel welcome and not feel like someone’s taking her mother (or father) away.  I hope this makes her feel more secure.

The name of the game now in this new apartment is what I call the real survivor. This is Haley’s Island. And the object is to keep her on the her own island the entire time.  We go back twice a week to the hospital as outpatients, starting tomorrow morning at 8 a.m. But other than that, and few nice trips through central park (which is across the street!), she will be here contained on her island.

In the meantime, I’m still cleaning like crazy. It’s hard to go from gloves, gown, mask 24/7 to none at all. It’s hard to know how much cleaning needs to be done when you don’t have that  first line of blue/yellow defense up anymore. I also am going to have to make sure people relize that she’s still sick, so no kissing on the face, getting too close. That’s going to be the hardest part.

Another thing I am told is that once the white blood cell count reaches a certain point, the number itself won’t indicate how her immune system is rebuilding. For that, there are a whole bunch of other numbers, and of course, I will be following those religiously. So this blog will be up for at least Day 100. That also marks the first milestone in her new immune system. Her post transplant treatment will be as an outpatient, so for those who thought the blog ended when she was discharged, please stay tuned and see what happens. And although Dance and Music Therapy will probably be discontinued, OT and PT will be coming to the clinic to work with her.

Guest today was Grammy. She stayed until we moved into our new situation, and then had to leave.

Funny moment of the day were the girls’ expressions when they saw each other for the first time. Well, it wasn’t funny so much as it was a fun moment.

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.

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.