October 2, 2019– Day +13

It’s hard to believe we have already been in the PICU for 2 nights. Thankfully, our time here so far has been quiet and peaceful.

As hard as it is to need to be in the PICU, we have felt so much relief. Bo is in his bed resting 24/7 and has eyes on him and his vitals at all times. That has allowed Lance and I to sit back and rest more than we’ve been able to in weeks. We have even slept better because we know how closely he is being monitored. So, although the PICU isn’t ideal, we are grateful for the care we are all receiving here.

As I was thinking through what I wanted to share in this update, so many praises came to mind. I hope you’re as encouraged as we are!

  • Good rest for all of us
  • Bo having a good response to dialysis
  • The dialysis machine running smoothly
  • His tummy softening
  • Engrafting of new, healthy cells
  • Feedings going well
  • No PICC line needed yet

We learned that the filter on his dialysis machine will most likely need to be changed today. The filter is complex and over time, absorbs clots, which in turn clogs the filter. It is expected, however it means they will need to take his body off of dialysis and put him back on after the filter change. Going back on can always cause complications with vitals, but we are hopeful that since his body did so well the first time, that each successive time will be smooth.

They have started to measure his tummy to see if it is shrinking. Hoping to see some progress there soon. We did learn that his numbers via his blood tests are trending down from what they were when they moved him to the ICU, which shows that he is responding to the liver med. The doctors have also said that his tummy is noticeably softer which is wonderful news.

Bo is officially engrafting! We laughed because despite everything happening, his body has not forgotten what it’s trying to do. His total white cell count is up to 740 today and his ANC is 140. Their goal is an ANC of 500 for 3 days straight. We are still far from that goal, but we are on our way.

Unfortunately, the timing of his engrafting is complicating things a bit right now. Our transplant doctor described it as entering the ocean and getting hit by a wave. Right now, we are getting hit in the face with a wave. But in a few days, we will be in the calm ocean. His new, healthy white cells are excited and running around everywhere trying to fix things, but right now they’re getting in the way a bit. Once his liver gets to a better place and the new white cells calm down a bit, everything should start working together in harmony. We are praying for no added complexity because of these wonderful new cells we have been waiting on for so long.

We didn’t end up putting in a PICC line like we thought yesterday. During rounds, the PICU doctor challenged the team to figure out a way to get him everything he needs without inserting an additional line. Everyone put their heads together and they have a plan! It’s still on the table if it becomes absolutely necessary, but we are grateful that it’s not something they want to do.

They have started Bo back on feedings through his tube but also new feedings through his IV. There is a delicate balance with fluid intake and what they’re pulling off via dialysis, so we are monitoring him closely. Bo has been constipated for about 4 days now and we need to see him make a dirty diaper ASAP. They are giving him some stool softeners to help that along, but so far we haven’t seen anything. It is also very likely that the narcotics he’s on are also playing a role in the constipation. We’re praying for poop!

For those of you who have been following along for a while, you may remember when we learned that Bo was positive for a virus called CMV. This information came to light while we were in the very early stages of planning for transplant back in June. CMV is a virus that many of us carry and can look like the common cold, but similar to chicken pox, our bodies are immune to it once we’ve had it and our immune system just keeps it in check. Since Bo doesn’t have an immune system, nothing is keeping his CMV in check and with the added stress he’s been under, it has reactivated. They are watching this closely and have put him on a med to hopefully fight the virus, but it is not ideal. The med can also strain his already strained kidneys, so they’ll be monitoring that closely as well. Prayers for the virus to be under control are needed.

Bo has been asleep almost the entire time we’ve been in the PICU. He woke up twice yesterday and was alert and looking around. We talk to him, rub his head and face, and tell him how loved he is. Then he falls back asleep. It feels like the Holy Spirit is resting on our room bringing continuous peace and comfort to all of us.

We haven’t shared much about our sweet Naomi in a while. Unfortunately, it’s been 2 weeks since we’ve seen her and it’s heartbreaking. She’s finally doing much better after having a cold, and we hope to see her very soon. My parents are taking such wonderful care of her, which we are so grateful for.

We will not stop saying thank you for your continued prayers. We have heard from so many of you that the verse shared yesterday has also come to mind for you during your time in prayer for us through this journey. We feel held up and are in awe watching God move. He has been so merciful to us.

To God be the glory ❤️

Our sweet Bobee. The skin on his face is finally able to heal and is looking so much better. No more red, raw skin!
Naomi ready to head to preschool yesterday for school picture day!
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One thought on “October 2, 2019– Day +13

  1. Thank you for this update. We can specifically pray and praise with you. Grateful you’re getting at least some rest.

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