Sorry for not posting last night. I was too exhausted to even write one coherent sentence. I was up the entire night on Thursday with Rafi. Will someone please teach my daughter how to sleep at night? Please? Pretty please? Of course last night, she didn’t sleep either. That’s four nights in a row that Rafi hasn’t slept. She also hasn’t had an afternoon nap on any of those days. I have no idea how this little girl is functioning. She sleeps early in the night for about 2 hours and then she is up asking for her back to be pat. We pat her back until she is asleep, make our way the 3 feet to our bed and by the time with Jackie or I lay down, Rafi is asking for her back to be pat. This goes on all night. Finally around 7:30am, Rafi falls asleep for an hour and a half. That’s it. All day. So now it is Saturday night, it’s 10pm, it’s my turn in the hospital and I just got Rafi to sleep 10 minutes ago.
We have developed a plan for tonight. We think that Rafi is waking up because she is uncomfortable. We’ve lowered her pain medications in anticipation of us getting out of here and I think that has backfired to a degree. Therefore, we are going to give her a dose of dilaudid when she is asleep and see if she stays asleep. Why dilaudid you ask? Well, fentanyl has a much shorter half life than dilaudid. In other words, dilaudid will last longer. Wish us luck.
I got a text message from Jackie this morning around 6:30am that said, “She has a fever, 101.9″. My reply was, “So much for leaving the hospital on Monday.” The threshold for a fever is 100.5. If we are home and her temperature rises to 100.5, we have to get readmitted for a couple of days. So it is looking more likely that we will leave the hospital on Tuesday or Wednesday at this point. We’ve already been here for 39 days, what’s a couple more?
Being that she is shedding the fluid weight, we stopped the diuretics. We have less than a kilo to go before she is back at her admission weight. That leaves only one other issue at this point, her blood pressure. We just can’t seem to get it under control. She is on five medications and this plan just isn’t working. I am going to remind the plethora of people who will be outside our door at 8:30ish tomorrow morning that the definition of insanity is repeating the same action and expecting a different outcome. I am sure that will go over well, but I don’t care.
Rafi is getting more chatty as the days go by. She is speaking in complete sentences now. Pretty good for a 28 month old. Not with the nurses though. She doesn’t really talk to them. I don’t know why. We were hoping our stay here would help alleviate her unbelievable shyness. Not so much. But tonight’s conversation centered around her eating. She told me she was hungry even though we just had dinner a few minutes before. The she broke out the line of the week. But first a little background. Rafi has never been a big eater. She stores food in the front of her mouth like a confused squirrel. She’ll keep it there for hours. It’s pretty impressive really. Anyway, here’s our conversation before bed:
Rafi: “Daddy I don’t know how to eat.”
Brett (trying to suppress laughter) : “That’s true Rafi but we’ll teach you and then you can eat anything you want.”
Rafi: “I have to put the food in the side of mouth with my tongue, and then chew like this (demonstrates).”
Brett (trying very hard not to laugh): “That’s right Rafi, very good, we can practice in the morning, time for sleep.”
Rafi: “Daddy, you get me a green chair so you, me and mommy can eat together.”
Brett: “Rafi, you already have a green chair at home. We can all eat together.”
Rafi: “We can eat together?”
Brett: “Yes, booba-loo”
Rafi: “OK, we eat Pizza and green waffles together. I’m tired”
Two Minute Pause
Rafi: “Daddy you don’t leave.”
Brett: “Sweat Pea, I am tired and let me show you were I sleep.” I sit her up and show her the bed 3 feet away. “You see the bed, I am tired, there is mommy and daddy’s bed, I am not going to leave.”
Rafi: “You tired too Daddy?”
Brett: “Yes Rafi. I am going to sleep very soon.”
Rafi: “You lie down with me and I pat your back?”
She just cracks me up. Total non-sequitur, I thought I would keep every empty syringe today and then list the medications she gets in her gtube. These are in no particular order and these are only the medications she gets in her gtube.
1. Ondansetron – 2.5 mls
2. Melatonin – 3 mls
3. Acyclovir – 5 mls
4. Gengraf – .4 mls
5. Gabapentin – 2.3 mls
6. Lansoprazole – 4 mls
7. Nifedipine – 1 ml
8. Metoclopramide – 1 ml
9. Midazolam – 3 mls
10. Gengraf – .4 mls
11. Ondansetron – 2.5 mls
12. Acyclovir – 5 mls
13. Atenolol – 1.5 mls
14. Acyclovir – 5 mls
15. Lansoprazole – 4 mls
16. Dexamethasone – 2.5 mls
17. Amlodipine – 2.5 mls
18. Fluconazole – .5 mls
19. Metoclopramide – 1 ml
20. Amlodipine – 2.5 mls
21. Acyclovir – 5 mls
22. Nifedipine – 1 ml
23. Gabapentin – 2.3 mls
24. Nifedipine – 1 ml
25. Acycolvir – 5 mls
26. Atenolol – 2.5 mls
That’s 66.4 mls of medicine today, or a little more than a quarter of a cup, and that doesn’t include a couple of others that are still running IV. Anyway, it’s 11:30, her blood pressure is high, this after a dose of nifedine under the tongue, and I have informed everyone that there will be no more blood pressure medicine given for awhile. Let’s see what happens. If it gets to high, we can give her whatever fast acting medication they have. I am just testing a theory at this point. Also, she is still asleep. So I got that going for me.
Here are her counts from this morning. She did not get another dose of G-CSF. On Thursday, her ANC was 1.3, on Friday it was 1.5 and you can see below for todays.
WBC – 5.4
ANC – 3.3
Until tomorrow……….