October 14, 2019– Day +25

This morning Bo was able to be disconnected from his dialysis machine. His kidney team is pleased with the amount of time he’s been able to be continuously connected to the machine and are curious to see how he will do disconnected. The last time he was taken off the continuous machine, he put fluid back on quickly and it felt like several steps backwards. We definitely don’t want that to happen again, but we are comforted by the fact that his kidneys have had 10 more days to heal and we just won’t know how he’ll do off the machine unless we try. Bo was able to have one small wet diaper today, so they decided to put him on the intermittent dialysis machine for a few hours this afternoon to see if he can go 24 hours between dialysis sessions and be OK. The continuous machine is more gentle and pulls small amounts of fluid all day long. The intermitent machine is more intense and pulls a bunch of fluid quickly. There’s pros and cons to both, but we are told that moving toward using the machine that he only needs a few hours a day is actually a step in the right direction. Because he was disconnected this morning, we went on a short walk around the unit and into the hallway. He was pretty stressed out by it all so it only lasted a minute, but it was wonderful to see him out of his room!

We learned that the blood bank at our hospital has platelets for Bo today. I asked our transplant team about when his body should start producing platelets on its own, and it sounds like there is a large range of when that happens. They hope to see stability (holding onto platelets) between days +35 to +45 and hopefully slowly begin producing them by day +60. We did learn that they ended up flying them in for Bo on Saturday night! Pretty amazing.

It looks like Bo’s CMV has stopped responding to the med they had him on and that we are moving forward with the super cells. We are hoping to get them this week. I am a little relieved because the med he’s been on can hurt his new graft and we don’t want that. We have watched his ANC and total white cell count drop from being on the med, and our team has kept a close eye. I just want his new marrow to have no hindrances in producing the healthiest, strongest, cancer-crushing cells possible. Please pray with us for Bo’s CMV to be completely taken care of by the new super cells and for his graft to recover and continue producing healthy cells!

We had one HUGE victory today! Bo started physical therapy (PT)! Our day was off to a bit of a rocky start with a fever and constipation, however this afternoon he was alert and calm and the physical therapist came by! Bo came ALIVE with the playful interaction. I didn’t realize how quickly he lost muscle control and strength. His hands were weak and shaking as he reached for a toy and he grunted and strained to hold onto a ball. It broke my heart to see how small things took so much effort and how 3 weeks ago none of this was a challenge for him. I am so grateful for early intervention and was in awe that he made some big strides even from a single session. We are so grateful for the team of people supporting our boy through his healing.

These last 2 weeks in the PICU have been a blur. I feel like I’m at my max capacity 24/7. Will you please continue to pray for strength and endurance for us? We still don’t know how much longer we’ll be down in the PICU and then once we graduate back to our Oncology unit, how long we’ll be there. It’s hard not knowing where the light at the end of the tunnel is. Some days are easier than others, but today is day 36 of being in the hospital and I miss our sweet Naomi girl and our life together at home. We trust we’ll get there, just trying to be patient in the process ❤️ Thank you for your prayers as we continue to run this marathon.