Day +19: Strummin' Along

Last night wasn't too bad. I'm a little exhausted from when Kal woke up around 5 a.m., though. The nurse was doing great to be so quiet during the night earlier, but then when she had to draw labs from Kal, his lines were not letting out much blood for the lab sample. Sometimes when this happens, it helps to sit the patient up and sort of wiggle their arms or make them angry to get the blood flowing easier through his central line. Since she was required to gather those labs, as much as she hated to do it, she had to try and sit Kal up to get his labs for the day. Unfortunately, she was unable to get enough blood for the sample, so she had to administer something called TPA, which is supposed to clear out any small clots/flaps that are covering the opening of the line into the bloodstream. Obviously, this whole ordeal upset Kal, so he was wide awake after that. I swaddled him back up again and rocked him until he fell back to sleep. This whole process took about 2 hours. Therefore, I was only able to get one more hour of sleep before the nurse tech came in for vitals at 8 a.m.

Napping after that short, early-morning wake-up. Look at those poor, cracked lips... /:

I promised myself I would take a nap later today to compensate for that interruption in my sleep, but I never did take that nap. Kal has been pretty restless today, so it's been hard for him to settle down for a nap. When he does fall asleep, he usually is still restless and wakes up from his rapid breathing, rapid heartbeat, and/or restless legs. The nurse told me today that this was also a sign of withdrawal symptoms. Therefore, Kal only got one good nap in today, and during that time I was eating dinner. Just so you know, when it comes down to food vs. nap: food wins every. single. time. (;

Finally taking a good nap!

So, instead of Kal being on the PCA pump now, the plan is to put him on oxycodone to help cover some of the bad withdrawal symptoms and then wean him off of that. Today, he was scheduled to get it every 6 hours. Tomorrow they may try giving it to him every 8 hours, and so on. I think the oxycodone has helped kind of take the edge off a little bit from the withdrawal symptoms. Kal has only thrown up 6 times today, I believe? That's way better than the 9 times he threw up yesterday! It sounds gross and weird to be still excited about puke, but in a place like this, any less puke is very appreciated. There were still some times of dry heaving too, with nothing coming out. In addition to all the things I've mentioned before, he's had an issue with diarrhea, the shakes, excessive yawning, excessive sweating, and random irritability. 

Having a happy moment and giving me little smiles.

Kal also had to have platelets again today. His counts were actually just slightly high enough by the standards of the parameters the doctors have set for required number of platelets. But, because he had thrown up so much already in the morning, his cracks on his lips and nose were actively bleeding, which is really bad when your platelets are so low. He did great with the transfusion, though.

Most of the rest of the day was just riding out the puking. The thing we are really waiting for is for his stomach to settle a little bit before they switch his immune suppressant to and oral medicine. This is because it would be much more concerning if he threw that medicine up, and having too low levels of it could cause issues of graph vs. host to possibly arise. Once he is able to take that medicine with less issues, I think we will be mostly set to be allowed to go home. The hope is sometime this week, maybe within a couple of days, that we can go home!
We need your prayers that everything will go smoothly that he can be discharged with no complications, please. (:

Apparently our mommy-son movie night wasn't that interesting to him, hehe.

I'd say the highlight of my day was when the music therapy volunteers came in to visit Kal. Oh my, his eyes got so big and were full of wonder and amazement as he heard those girls sing and play some instruments. His favorite was the guitar. The volunteer placed Kal's hand on her guitar, and Kal wouldn't let go. He just sat there with the biggest eyes ever. I think he just loved it so much, he didn't know what to do! Even after they tried to pull away the guitar from off his bed and allow him to play with other instruments, the moment she propped her guitar back on his bed, he went straight for it. It looks like we might have a future guitarist on our hands, hehe!