Haley’s Giggle

White Blood Cell Count: 2.4

Absolute Neutrofil Count: 1.9

Not that we’re paying attention. But if we were, the second number is the one we are now concerned about. It will give a more accurate indication of whether or not the transplant took. So while going from .9 to 2.4 is amazing, the significance of the numbers have now changed. And we now need two more days for the ANC to be over .5 before it can be officially declared engraftment. The doctors are very happy about this progress.

Ranan was on Haley duty all day today, and everything seemed to be going fine, until the neurologist came in. The cat scan didn’t reveal anything about the tremors (which is good news because he was able to rule out seizures) , but he did say there was a small amount of bleeding in the brain.  At that point, they didn’t know whether it was an old bleed or a new one. The doctors didn’t seemed too concerned that it was interfering with brain function, but they needed to still figure out the when and why of it. So they decided to monitor her brain activity and hook her up to an eeg. For those who don’t know how one would monitor the brain, they put about twenty probes all over her head (some with tape, others with glue), and wrap it up. The wires then feed into a heavy battery pack that in turn submits the signals to a a computer that constantly displays the readout. They also attached a security camera orb to the monitor so that they can record her tremors. We were to press a button whenever we saw a tremor. 

It took over two hours for two nurses to attach all the probes. And at the end of it all, she lets out a big smile. I wish I had her strength.

The other issue is her platelets. Only a day after transfusion, it didn’t seem to move very much, and now the concern is that she’s finally starting to reject the platelets. We will see after the next transfusion. If that’s the case, I think either Ranan or myself will be donating platelets for her.

Guest today was Grammy. 

I realized that the previous entry had no funny thought. And I can’t actually think of anything funny for this day. So thanks to everyone who sent in jokes, either through the blog or on regular email.

White Blood Cell Count: 0.9

Not that I’m counting or anything. Again, it doesn’t mean anything YET. It is going in the right direction, and that is good enough right now. She had many in-house visits today:  in addition to the parade of doctors and nurses (that’s not an insult, by the way; I happen to love parades), the neurology team came to observe her tremors and head-shaking. He couldn’t tell if it was behavioral or involuntary, and whether or not it’s induced by the various drugs. He ordered a brain CAT scan, which she had this evening. We were supposed to get the test results already. It’s 2 a.m. and no word. Also to come today was the dance therapist. She brought in reggae-style kids music, and Haley loved it. The DT told me that Haley was “totally” getting the body connection idea.  I have no clue how the DT knows this, but Haley is so happy when she comes, so I just nodded in pleasure. The occupational therapist also came, and I know they do extremely important work, but nothing compares to dance therapy. At least not for me. It ‘s a highlight.

 Going down to the CAT scan is a bit of a pain. I sit in a wheelchair holding Haley while she is draped in a hospital gown. I started underneath the gown with her, but out body heat as too much and I almost passed out. She was surprisingly good with the scan itself. She moved her head around a lot, but when the machine started going, she kept very still.

Favorite nurse changed Haley’s dressing and noticed that the catheter was coming out, just lke i had noticed a while back. Sche scrubbed wire and put it back in. All in all, Haley had a very active and calm day.

Guests today were: Aunt Elana, who decroated the window very nicely.

White Blood Cell Count: 0.3

Not that I’m supposed to be paying attention to the daily numbers, unless something major (good or bad) happens. But her mouth is definitely feeling better because she at least tried to suck on a bottle today. She of course didn’t take much, not even 1/4 an ounce, and then vomited it all up and then some later. But overall, it’s been a nice slow day, with only the occasional issue. Then again, favorite nurse was there, and things always seem to run smoothly when favorite nurse is around. Haley actually slept more than 3 hours today. Of course it was very hard to put her down at night, but she at least slept. That’s good. Her diaper rash and mouth sores (and any other place along her digestive tract that she has sores) are healing a bit, and apparently a count of .3 can do that. The magic numbers are either .5 for 5 days straight, or 5.0 one day (the count can jump that quickly). The new strep cultures haven’t come back, but her temperature has actually been on the low side, so I’m not panicked over it. Besides, she’s on every antibiotic she can be at this point. I’ve asked the attending to set up a neuro consult, as I am worried about her tremors. That will take place some time tomorrow.

Today was the first day without the usual attending. I think Haley misses him. But this new attending is very nice, and has a nice gentle approach. She even came in a second time just to check in.

I was outside the room painting Haley’s door window, when I met the next door “neighbors.” Their story was incredibly sad: this is the child’s second transplant (first one was stem cell, second one is regular bone marrow transplant). This is why I don’t talk to anyone at the hospital. Especially other parents.

Today’s guest was Uncle David, who was nice enough to buy our next door neighbors some snacks when he went out. Thank you Debbie for giving him up right before Passover. He was greatly needed.

Funny thought today was the amount of people who work at the hospital who now scream “Butt Paste” to Haley to try and make her laugh.