Bo has made so much progress over the last few days and weeks and today we have started to see some regression.
Bo had been showing interest in drinking, eating, and taking his medications on his own so we were able to remove the feeding tube from his nose. His team also decided to take him off the IV nutrition this week as well, which was a huge step forward. Unfortunately, due to a number of factors, Bo is back on the IV nutrition and they replaced the feeding tube as well today.
I’m feeling discouraged today. Home felt so close and now it’s a bit further away. Going home next week is still on the table, however now he could be going home on the IV nutrition as well as needing feeds through his feeding tube via a pump. He may also need to be connected to IV fluids to help keep his electrolytes balanced as well. If I’m honest, going home still being connected to so many things doesn’t feel like the freedom I was hoping for. It’s far easier to manage all of that in the hospital, but navigating it at home feels daunting (not sure how we’ll navigate an IV pole and our stairs at home). I know so many things feel impossible at first but we will figure it out and look back at this as such a small part of a larger journey, but today it feels discouraging.
Overall, Bo is doing well. The big things that they watch in regards to his transplant are all going great. Today for the first time, Bo’s platelets went up on their own. That is a HUGE deal and something we have been praying for since the PICU. Praise God for these victories in the midst of things that feel discouraging.
Will you be praying for us in this final stretch? We want to finish well and feel like our endurance is wearing thin. Monday will be 70 days in the hospital. I kept telling our team that my expectations were low for going home on Monday, but I think I had fooled even myself a bit. I feel more disappointed than I expected by this setback. I am thankful for a few more days for Bo’s team to continue to monitor him closely and for him to become increasingly stable so that he can thrive at home. God is still good and faithful on days like today and by His grace, we’re gonna make it ❤️
8 thoughts on “November 15, 2019– Day +57”
So close and yet so far… from home that is! Chloe and Lance, I wonder if the doctors are looking at sending Bo home on IV nutrition because they feel the parents’ desire to be home. Perhaps another few days or even a week in hospital until he is disconnected from IVs would be doable. I agree that stairs at home is daunting. Praying for all of you and praising God for Bo’s good health!
Thank you for sharing the specifics.. praying for the best for Bo.. so thankful for the great strides.. praying for you and Lance.. strength, courage, endurance, .. agreeing with Lisa.. ???
Dear dear Chloe and Lance, to see the picture of Bo standing on his bed is such a long way from where I last saw him!!! He is so much better! The move home is close at hand. Be brave in this time, as you have been all along! I will pray for Bo’s continued miraculous healing from all that he has been through, remember those really scary days?
I will pray for your continued courage, strength and peace about all of this. I will pray that Naomi remains resilient in this season. Know this, He has brought you all this far. He will take carry you the distance. Love to all of you.
So thankful for the progress, but also understand your disappointment with the setbacks. This whole thing is a miracle marathon , even with setbacks, so we keep our eyes on that, and bump up the prayers. Lord, work your power on Bo and his tired parents. Revive and empower them in these next few weeks. Our eyes are on You.
Thanks that he’s standing!!! That’s a miracle. We ask for more of the same in Jesus’ name.
Thank you, Lord.
All our love….
“The Lord bless you and keep you; the Lord make his face to shine upon you and be gracious to you; the Lord lift up his countenance upon you and GIVE YOU PEACE.” Numbers 6:24-26
I have followed Bo’s progress with your sharing of it and the Lord has Bo, you, Lance and your Daughter (sorry I can’t remember her name) under his wing. Jesus has heard all of our prayers and I am confident that all of them will be answered. I feel that it is the Lords will that Bo be returned to full health and a long life and that Jesus has many things that he wants Bo to achieve. Your strength is a testimonial to your faith in Christ and he will reward this faith. Continue to be strong.
Dear Jesus please continue with your healing of your Son Bo and please continue to give strength to his Mother and Family. We Thank you so much for the progress that Bo has made and we know that all things are possible in you.
Thanks for the update and so glad to see him standing as well
Continuing to pray for healing and home will be challenging but as a home health nurse I know it’s more comfortable. I’m assuming he would be on peds infusion services. Blessings on your family and continued prayers for peace Warmly. Nancy breen
Chloe, thanks for sharing your feelings and being so transparent. We are praying with you that the medical staff are making the right decisions that are best for Bo…… Praying that God send angels to minister to you and strengthen you and Lance. Bo is so blessed to have you as his parents. Hugs from Maui…..