Day +27 through +34
His kidneys started to function with the help of diuretics, and the main focus is to continue to eliminate the extra fluid that has built up in his body. We are also beginning the weaning period to help get Jace off the muscle relaxers and sedation.this is a very long process since he has been on them for so long, so each day they will cut back a little as long as his body can tolerate it without too much withdrawal.
We have also finally been able to get him out of the bed, and we have been holding him in a chair about once per day for a few hours (just to have a change of pressure points and scenery). It’s so wonderful being able to snuggle with him again!
They have been ultrasounding his liver weekly to determine the healing progress of the VOD. There are still congested areas of blood flow, bot others are beginning to open up again. They will likely continue weekly ultrasounds to track the progress.
Day +35
We were able to get transferred back to the stem cell unit!! This is huge because there are a lot of parameters the patient needs to meet before they are able to go back to the floor: Sedation drips have to be weaned, and respiratory support has to be minimal and on a standard nasal cannula.
The stem cell doctors have agreed to continue to wean his narcotics slowly on the floor (since he has such a high tolerance now, the weaning process will take weeks to months and that can be done on the floor rather than rushing it in the PICU).
Continuing to diurese fluid to bring him back to a normal weight, instead of being fluid overloaded.
And he pulled out his NG tube this morning…..so another x-ray to make sure that is in place, and socks on his hands while he sleeps!!
Day +38 through +40
In addition to trying to wean off the benzos and narcotics, and switch some meds to oral, he has been nauseous and the doctors aren’t sure the pinpointed reason. Vomit can be a sign of withdrawal, but it can also be due to some of the meds he is taking, or it could be related to how large his liver is, pushing on his stomach….too many possibilities to know exactly what is causing it.
He is starting to become more awake and interactive! He has started tracking with his eyes and has started grabbing at things.
Day +42 through +47
Giggles!! Jace has increasingly become more interactive and has smiled a little, and giggles for the first time today!
Still vomiting frequently and the doctors aren’t sure why. The feeding frequency has been increasing through his NG tube to allow more gut movement and absorption. Also still managing his diuretics to continue to remove excess fluid.
So far his kidneys and liver have been maintain adequate levels, near the normal range so that is a great sign of healing!
He continues to get blood products almost daily. Platelets = 1-2 days, PRBCs = 4-5 days, FFP, IVIG, Albumin intermittently
Day +48
Over the past two weeks back in the stem cell unit, the oxygen requirements have lessened. He was able to be on room air for a bit today, without any additional oxygen flowing! This is progress!
Day +49
Jace started breathing faster yesterday afternoon but his O2 sats were still trending beautifully overnight. He was on room air most of the day today, but increasing his respiratory rate and started grunting on his exhales.
On the positive side, he had another liver ultrasound today and the liver seems to have corrected all the blood flow blockages from VOD! This means the liver is able to properly function, and over the next couple months it will slowly shrink to normal size. To put it in perspective, the bottom edge of the liver on a baby usually is around the bottom of the ribcage (in adults it’s tucked up a little higher). Jace’s liver edge was down near the top of his hip…..picture that on an adult for size comparison.
Sending hugs,
Andrew, Becca and baby Jace