A Not-Quite-As-Bad Day

Well, we didn't get the procedure in today because Bailey's blood was too thin (INR 10 - normal for her is 2 to 3) . . . actually WAYYYYYY too thin. At first they thought the blood test was wrong, but they did another one and it was 9.6. So, they spent the day (and still spending the night) trying to get her blood to thicken up. They gave her 2 units of FFP (fresh frozen plasma) and then some Vitamin K. They are testing her blood right now and we should hear within the hour the new number. They might have to give her 1 or 2 more units of FFP. The first unit of FFP went fine. The second unit was almost all the way in (they run it through an IV pump) and she felt a tickle in her throat. Hm. Didn't think much of it. Then, she started scratching and her ears and eyelids were itching. Then, in the next 2 minutes, she said, "Mom! My lips and throat are swelling up!" Oh my. That was quite scary. I have to get across to anyone who might be reading this entry, that Bailey is an incredible young lady. She was so scared and thought her throat was going to close up so she wouldn't be able to breathe, but we talked through those few minutes together and she stayed completely calm even though the tears were streaming down her cheeks. She was able to tell us that her lips were getting bigger and it was getting hard to swallow but she could still breathe. Her lips kept getting bigger but, fortunately, a million thanks be to God, her throat didn't swell anymore. She got bumps (hives, I guess?) on her eyelids and inside her mouth and throat and a rash on her chest and back and ears. Our wonderful nurse Amanda (whose birthday is today - Happy Birthday Amanda!) ran out to page everyone she could think of and ran back in to give her Benedryl in her IV. It's amazing how quickly that stuff made a difference. The itching and rash were gone in about 2 minutes. It took a little while longer (30 to 60 minutes) for the hives to go away and her throat to feel better, but at least it didn't get any worse. They say it was just a reaction to the FFP, which is fairly common. We were just grateful that she didn't have any of the other reactions we were warned about like fever, back pain, and other not-so-fun things.

Just before the plasma issue, in order to run the plasma, they had to give Bailey a second IV. They tried 3 times before they finally got it. Oh, it's awful to hold your child while they're crying and saying, "Mom, it hurts! It hurts!" But I would rather be no where else in the world than right there with her.

So, we just found out about an hour ago that her first I.V. started leaking and went bad. So, if she has to get more FFP (depending on the results of the blood test we're waiting on), she'll have to get another I.V. tonight. I just hope and pray that her blood gets thick enough to do the procedure tomorrow and Dr. T can put in a central line. That way, she won't have to get stuck anymore. You should see her arms. They have bruises and I.V. sticks all over her forearms and hands. She's really packing on the pounds in additional fluid too (weighed in at 110 this a.m. - her base weight is 85 - or at least I think it still is - she hasn't seen that since last December). They've had to give her fluid because of all the vomiting she did yesterday and, today, the FFP gave her additional volume. She's peeing ok, but it is not as much as they'd like, even with the diuretic. They say that should be better after they get some fluid drained.

She woke up this morning really scared about the procedure but, after all of today's challenges, I think she's ready for it now. Still nervous, of course, but ready.

Thank you all for taking the time to write back to us. You are giving us so much encouragement, strength, and love, that we can't even begin to return it. But we're glad to take it right now. It's very comforting. Thank you.

Love you all,
Angie