Catch up from Day +19 through Day +26
Posted October 4, 2017
The fluid accumulation in his abdomen has been lessened by draining and pulling excess fluid off through his continuous dialysis, so there is no need for the drain to be in place anymore! So they pulled the abdominal drain, as well as his Foley catheter (since they become infection risks if they are not being used for any benefit). Steps in the right direction!! He also started making some RBC's as well which is another sign of the transplant moving forward!
Day +20 and +21
Most of the challenges the team of doctors face are the sedation levels. With being on narcotics for long durations (anything more than a few days) the body begins to tolerate them, often times leading to increases in the doses. This is a challenge because trying to find the "sweet spot" always has pros and cons. Since he is intubated, he needs/can handle higher doses of pain meds and muscle relaxers. However when getting ready to be extubated, the level of sedation needs to be decreased so that there is a drive/desire to breathe. This has been a work in progress....
The doctors have also been watching his bilirubin levels rise, which is due to his liver not recovering yet. This leads to the yellowing of his skin that continues to get darker each day (jaundice).
Jace was extubated! They switched him to a high flow nasal canula, which was later upgraded to a CPAP (pressurized air through a mask to help keep his lungs inflated).
Unfortunately his bilirubin? keeps rising and there has been an inflammation response with his WBCs which leads us to believe there is an infection. He has been put on two strong antibiotics and hopefully we will see a change soon.
The positive side is that he is finally stable with his comfort and we found a sweet spot with his meds! They are going to slowly transition some meds to oral too.
We started trickle feeding formula through an NG tube to get his GI tract moving again, and they also gave him some meds to start the movement as well. He pooped for the first time in 13 days!
We are hoping the new antibiotics are helping because today is the first time in days that his bilirubin has plateaued and his WBCs have started to fall. If it continues to trend this way, we will continue the treatment dosing of the new antibiotics and hopefully the infection will resolve!
Bilirubin is still falling!! Hooray for healing the liver! His CPAP mask is starting to have some pressure points as he starts to wiggle around a little more, so in the evening we are switching back to the high flow nasal canula to relieve that irritation.
Another challenge they have been having is he drops his blood pressure significantly when he becomes agitated and in response to vascular pressers which is the opposite response from the normal reaction. Then when weaning off the pressors, his blood pressure increases.....so odd. This is mostly the challenge when trying to shift fluids (mostly related to removing fluid off him since he is not urinating).
The last and final speed bump we are running into, is something called ICU Delerium....this is where the days and nights get flipped or blurred together and the mind looses the sense of its surroundings due to the constant interruption and noises. Jace has started a medication treatment protocol to try to reverse this, and we will be extra diligent to make day time seem like day time, and night time seem like night time.
It's going to be a big day for Jace organs to prove themselves! The team has agreed to give a "holiday" from the continuous dialysis machine to see if they can jump start his kidneys. They will pull him off the machines a midnight to see if he produces any urine output. We will see what happens!! Hoping for pee! :)
We are also 1/4 of the way to our 100 days post transplant! So far the transplant itself is right on track, he is producing WBCs and RBCs which is awesome! They can't test for platelet production unless they do a bone marrow biopsy, but they will start drawing some labs over the next few months to see what the trend is for blood product production, and they will be able to tell what percentage are his cells vs the new donor marrow!
So far no pee overnight :( but they think they might try some intermittent dialysis instead of putting him back on to continuous dialysis first to see if they can help with stabilizing his fluid balance. The only deciding factor is his blood pressure. With big fluid shifts, it affects his blood pressure and he has been having big dips in his blood pressure so they are watching that closely. His kidneys just need time and stimulation to start working again since they haven't had to work in a while (because the continuous dialysis did the work for them).
Day +26 in the evening...
So the intermittent dialysis was fairly successful, but it was a loooooong day for us all. Jace was having a really hard time keeping his blood pressures up, even after maxing out his dose of vaso pressers....the first two hours of the three hour treatment were very touch and go, and his pressures kept plummeting, then dialysis would stop removing fluid and his blood pressure would slowly rise back up to his baseline minimum. Toward the end of the treatment, he was able to utilize the max doses of pressers and maintain his blood pressure to allow them to pull fluid off, so he would be essentially "even" with fluid in's and out's for a 24 hour period.
On the bright side he was a little more awake today and he is starting to be more alert. He is not quite tracking us with his eyes yet, still a little too sedated for that, but he is starting to actually look at things and out the window.
Pray for pee!!
Sending huge hugs!
Andrew, Becca and baby Jace
p.s. so sorry for the delay in updates, we have been incredibly busy each day and we appreciate everyone's understanding of this! xoxo