Thursday, March 29, 2012

Day Zero...Here we go...

Today is Day 0. Sarah was sort of excited last night, so she went to bed late, and we got up around 8 for the transplant at 9. Sarah was already fussy from not getting enough sleep, and the two nurses, nurse practitioner and the doctor scared her into thinking that some sort of major procedure was going to happen, so she freaked out a little. I freaked out a little.

All of the machines are off, and the bone marrow transplant that has gotten so much hype is a bag that looks like blood hanging from her IV pole and allowed to drip by gravity without the aid of machines.
Once everyone left the room, she calmed down and had worn herself out enough to fall asleep. Strange that something so important to Sarah's very vitality could be so anti-climactic! Her very life depends on this fluid dripping through her veins, and I am grateful for the family who could be here, so very grateful for the everyday sort of conversation in the room that reminds me that there is life after transplant, and even during!


It is now 10:37, roughly twelve hours after the bone marrow transplant, and today has been a whirlwind of visitors. Family and some very close friends who are practically family came down to visit, and Sarah did amazing! The transplant took roughly about an hour an a half, and she slept through the first half, and her energy was as high as it usually is when she gets blood. The transplant itself was little more than a glorified blood transfusion with a lot riding on it. Then, they went to unhook the tubing. Leave it to Miss Boots to make the staff earn their paychecks.

I may have mentioned before that my daughter is a little walking Murphy's Law. Anything that can go wrong, will go wrong. After a successful transplant, they went to unhook the tubing from her broviac line, and the end broke off in the end of her lumen!

This is a picture of a standard double lumen broviac line. The single tube at the top is surgically implanted inside her chest, Sarah's is in the center, but it is sometimes placed on one side. The two tubes that hang out are called lumens, one with a red cap, one with a white cap so that they can be told apart.

When they went to unhook Sarah's transplant from the red lumen, a piece of the tubing from the transplant broke off inside the red cap, so the whole red cap had to be replaced, but it's not like it just screws off. They basically had to perform a surgical procedure of sorts on the broviac. They had to cut the tube, replace it with new tubing, and it took forever because they were having trouble. Luckily, her favorite nurse Dana performed the line repair, her favorite child life specialist, Ashley was there, and the tubing just hangs out of her, so Miss Boots tucked her hands behind her head and commented every so often on how it was taking forever, in between rounds of "Guess that Princess".

The best part of my whole day? When Child Life found a way at the behest of the nurse practitioner to prepare a "transplant" for the soft Lalaloopsy doll that she received as a gift from her favorite OICU nurse, Kara, yesterday.
 See the bag of "bone marrow" hanging in the upper left hand corner, leading down to the Lalaloopsy in the bed!
 Sarah, putting "leads", a blood pressure cuff, and a Pulse-Aux on her patient
"I'm a good nurse, Mommy!"

God bless the Child Life Department! This took them a good while to figure out, and where they got red food coloring, I will never know, but this made her so happy and greatly lessened her fears.
Sarah enjoyed all of the visits, all of the presents (most of which were Lalaloopsies!) and all of the love both here and from afar that she received today. I think her picture went viral on facebook today, and we are so, so grateful that so many people love and are praying for her.

Now comes the hardest part, the watching and waiting. They tell us that the first 72 hours are critical, but that anything could happen at any time, so we are not out of the woods once those 72 hours are up. We are in for an even more difficult long haul. But if it means I get to see this face every day for the rest of my life, it will be SO worth it!

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