October 30, 2019– Day +41

Bo seems to have turned a corner yesterday for the better! He has more energy than we’ve seen in 5 weeks, he’s gaining strength, and his kidneys are becoming more and more stable. His kidney team has decided that they want to try skipping tomorrow morning’s dialysis. They aren’t sure if he’s ready, but they said they can’t know how he’ll do unless they try, so they’re trying! I asked what the worse case scenario is (if it’s apparent that he’s too fluid overloaded and having trouble breathing, etc) and they said they’ll just order dialysis for the afternoon instead. Their hope is that he can go until Friday morning and perhaps we can get on an every other day schedule. Will you pray that Bo does well tomorrow?

As of yesterday, Bo’s team has decided that they will no longer be drawing his labs twice a day, but instead will just draw them every morning. This is because Bo’s platelets are starting to stabilize a bit and they aren’t as concerned about him needing them twice a day anymore. This is in part because his liver is starting to recover. When his liver was not doing well, it was actually destroying the platelets he was getting (really bad timing with the platelet shortage happening)! It was hard to keep up with his needs. Thankfully, as his liver continues to heal and as his marrow gets closer to being able to produce platelets on its own, Bo’s platelet situation continues to improve. We are praising God for the progress we are seeing!

Tomorrow is *hopefully* the day we can take Bo off of the CMV medication he’s been on. I am praying the labs they draw in the morning will tell us that the CMV is still undetected! We are still waiting on the bone marrow biopsy results–I will update again when we know!

One new prayer request is for Bo’s gut and appetite. We are grateful we have been able to keep his gut moving these past 41 days through his feeding tube, however his team would like to see him increase the amount he’s taking in via his gut. The mucositis (mouth sores throughout his mouth and digestive tract) he suffered destroyed his gut and has been to blame for the bulk of the nausea and vomiting which has plagued him for the past 5 weeks. It is clear that his gut is healing, however his tummy is not tolerating much of anything, nor does he have an appetite. Thankfully, he is meeting his caloric goals through the nutrition he is receiving via his central line (called TPN). They would like to see Bo no longer needing TPN and begin to receive all of his nutrition via his feeding tube (formula) or by consuming solid foods prior to going home. At this point, he has no interest in solids and even if he does try something (like applesauce) it typically comes right back up a few minutes later. Will you be praying for his gut to heal and for his appetite to return?

The fact that our team is even talking about goals for discharge is so exciting. I am thankful we have a long runway to plan for going home because it means that the process will not be rushed. When Bo is ready to go home, they will send him home, and not a day sooner. We want him to be ready so that when we get home, we are home for good. So far the 4 big goals for discharge are:

  • No longer needing dialysis
  • Only needing platelets a few times per week
  • Weaned from pain pump
  • Transitioned from TPN to feeds through feeding tube or eating solids

Those feel like big goals at this point, but I am so encouraged by the progress I am seeing in him. I know he will get there! Will you continue to join us in praying him home? We are so thankful to be sharing this journey with you all!

This was during dialysis today (the red line is the blood coming out and the blue line is the blood returning to his body). Bo loves playing with his coin box and clapping is mandatory!
Bo loves anything with music, so he’s especially loved the movie Tangled lately
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5 thoughts on “October 30, 2019– Day +41

  1. Precious videos! I will continue to pray for those specific goals! What a wonderful day it will be when Bo comes home for good!

  2. What an encouraging report on Bo! Thank you for sharing. Love the videos – brings tears to our eyes – he is so sweet……
    Bless you both and we will definitely be lifting Bo up in prayer as you requested. Hugs….

  3. Hurray for great news! Love seeing Bo play. Thanks for sharing?More prayers, unending… love, hugs & prayers, “Aunty” Janet

  4. Every gain is such a victory!!! Like a coin deposited in the bank of recovery!! He is such a darling and a brave boy!!! So many prayers for that healing and return to HOME.
    All our love…

  5. I pray for Bo
    I am Familiar with the symptoms as I have triumphed with God’s help over leukemia. I was blessed with a stem cell transplant. I am so excited Bo is getting stronger by the day! His victory is through the Lord, He is blessed with the mantle of protection in his health.
    I pray also for Bo’s family, For the strength and Supernatural endurance.

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