October 28, 2019– Day +39

We have wonderful news! Bo’s CMV results from Thursday came back as weak positive, which means that there were only traces of virus detectable, but not a quantifiable amount. Today’s results already came back and the virus is UNDETECTED! Glory to God! Our team wants to see two undetected results before taking Bo off the med he’s on, so hopefully that will happen on Thursday or Friday! We are so happy!

Our weekend ended up being a little tougher than we had hoped. Bo has been needing platelets daily, however that is an improvement from needing them multiple times per day. During his transfusion yesterday, he had a reaction. Thankfully, he has never had a reaction before, but it can always happen and the risk increases the more he received transfusions. He ended up getting splotchy (rash) but it seemed to get better with Benadryl. They will now monitor him more closely during his transfusions and give Benadryl before no matter what. We have continued to experience platelet shortages, and Bo has had to receive unmatched platelets twice so far. Interestingly enough, the platelets yesterday that he had a reaction to were his exact match, so it can happen anytime.

We have begun weaning Bo from his pain pump and a nausea med. Both require weaning because withdrawal is a risk. As we wean we do notice some changes in Bo’s comfort levels, but we are trying to do it as slowly and gently as possible. Thankfully we can take our time because weaning isn’t what is keeping us from going home. Please be praying for this to go smoothly and for Bo to adapt well as we bring him off both pain and nausea meds.

Bo’s kidneys are slowly continuing to recover. He is still requiring daily dialysis and it doesn’t look like he will be able to tolerate doing it less frequently yet. He is starting to have more frequent wet diapers, but they are very small amounts. Anything is better than nothing! We are learning so much about our bodies and how beautifully complex they are. Most recently we have learned about how our kidneys regulate our blood pressure (BP)! Because Bo’s kidneys aren’t working well right now, his BPs have been very high. His BP tends to drop into a normal range during dialysis and then creeps back up shortly after. It’s our understanding that as his kidneys recover and start producing the hormones that regulate BP again, his BP will actually be higher as his body adjusts to the hormones again and hopefully will come back down in time as things regulate. Isn’t that amazing? The more we learn about our bodies the more in awe we are of our Creator. We truly are fearfully and wonderfully made! Please be praying that his kidneys continue to heal!

Bo’s liver is also continuing its slow recovery. This one is harder to see as his belly still looks so big and taut. Some days it looks bigger than others, but his team reassures us that his labs are showing improvement. Please be praying that his liver continues to heal and that it starts to shrink back to normal size.

Your constant encouragement keeps us going. It hard to believe tomorrow will be 50 days of being in the hospital. It’s definitely felt as long (some days longer), but it is building endurance in us that we are grateful for. If I could describe how I feel in one word, it would be exhausted, but not the kind of exhaustion a good nap or night’s sleep can solve–it’s deeper. But we are truly experiencing the strength that comes from Christ–when we are weak, He is strong. And He has given us His people–YOU! We couldn’t do this alone and are so glad that we were never meant to. We thank God for each of you daily ❤️

Davis stopped by to see Bo today. Sadly he’s not able to come into the room (transplant rules) but Bo was so happy to see him! As you can see, Bo has his Davis stuffie that he keeps close at all times!
I got so excited when Bo showed interest in a carrot, however he only wanted to play with it! Baby steps!
Bo has been really thirsty which is a great thing!
Watching a movie with Sister
This cup is almost as big as he is, but for some reason, he LOVES it. We may need to get him his own someday!
Posts created 114

10 thoughts on “October 28, 2019– Day +39

    1. Praying for Bo and and your family from up North in Snohomish WA. (Family member of mine (Danita N.) shared prayer request many weeks ago).Wonderful to see him progressing. God is faithful! Thank you for letting Him use you and Bo to speak to others through your story even though it may feel others are speaking to you. Stay strong and keep charging! You can do it, Bo! Bo knows victory!

  1. We continue to pray for you Baby Bo and look forward to the day we get to meet you and your amazing family. We are grateful to know that God is watching over you and we praise Him daily for all the Doctors and Nurses who are taking care of you. Your Friends in Christ.
    Dorinda & Craig Alberthal

  2. I’m praying for Bo! So happy to hear good news! God is amazing. I think about your family multiple times during the day. It amazes me how a tiny little baby can be so strong! He’s pretty special!

  3. We never cease to be amazed at how intricate our bodies are….. we are learning with you as we read your updates and see those wonderful pictures of that little boy with such a big spirit! And so amazed at your strength that the Lord is giving you. We wait with anticipation as we read your reports. We hurt with you, we cry with you and we rejoice with you in all the different levels of improvements as well as some setbacks….but God is almighty and He has his hand on Bo and your sweet family! Your little girl is so beautiful! Praying, praying, praying for complete healing and restoration. May you continue to wait on the Lord to be renewed in your spirit….may you feel His presence around you and give you strength, hope and peace….Hugs from us…..

  4. What an amazing family you are and we are priviledged to pray for you and help you. Enjoyed meeting you Lance, and look forward to meeting Chloe at the River…hang in there Bo- so happy for the progress being made and the hope of getting home before thanskgiving sounds promising. We will continue to pray!

  5. Thanks for sharing the good report! We will continue to pray for Bo’s complete recovery. Your family is such an inspiration and you’ve been such a shining example of God’s grace through this experience. We are so excited for Bo to get to visit Davis one day soon! ??

  6. It’s wonderful to see a spark in his eyes in these pictures. He’s beginning to have the same look in his eyes as he did in the photos I had seen of him before this whole ordeal began.

    Love and continued prayers from your family on the East Coast. Thrilled to see His blessings.

  7. GOD IS SO GOOD ! Healing one body system after the other while we get to be the blessed witnesses! It is such a privilege to pray for this brave little boy and his courageous, faithful family. I can hardly wait to meet all of you! Hoping and praying that you will be home by Thanksgiving with a cancer free, CMV free, TPN free, pain free precious little boy!

Leave a Reply to Kristin E Hess Cancel reply

Your email address will not be published. Required fields are marked *

Related Posts

Begin typing your search term above and press enter to search. Press ESC to cancel.