November 7, 2019– Day +49

It’s been a quiet few days around here! Some days have felt more like 2 steps forward, one step back. Other days like today feel like 5 steps forward. It’s hard to predict when we’ll have good days and tougher days, but we are grateful to be seeing progress nonetheless.

Bo had continued to struggle with high blood pressures and low potassium until today. His blood pressures are on the higher side of normal today, but they’re normal! His potassium also stabilized today finally, and we are hoping it stays that way!

We said “Auf Wiedersehen” (German for “goodbye”) to Bo’s dialysis central line today! The removal of that catheter was a huge milestone in his recovery and we are praising God! The procedure was much simpler and less invasive than the original placement. There was some concern about bleeding since his platelets are still on the low side, but bleeding wasn’t an issue. Overall, a very uneventful procedure!

We have seen HUGE strides in Bo’s energy and activity. We have been working hard to keep him moving and he is making good progress. Today he did some walking with the push walker and it was the first time he has been able to be completely disconnected from his IV pole since we’ve been here (59 days). He felt free and was so happy!

Nutrition has continued to be a challenge these last few days, but I am hoping to see some progress soon. They are slowly weaning him off of his IV nutrition which is wonderful, but in order for him to be successful off of it, he needs to be able to take in his nutrition orally. He desires to eat purees and drink water, Pediasure, and other calorie dense liquids, however his tummy doesn’t seem to always like it. Some days it comes back up instantly, other times a while later. Although this can be normal for the gut to take some time to readjust to normal nutrition again, it can be a symptom of graft vs. host disease. It can effect the gut and one symptom is intolerance and vomiting. If I’m honest, that makes me nervous. Can you be praying that his gut begins to receive nutrition and that he is protected from graft vs. host disease?

Overall, I see Bo making some great strides. Each day has it’s own struggles but also it’s own victories. I think now that we are on day 59 of our stay here, I have never been so ready to head home. I’m feeling antsy! God has been so faithful every single day thus far and I know he will continue to sustain us each day we need to be here. Thank you for celebrating these victories in Bo’s recovery with us, and also partnering with us in prayer through the tougher things we are still facing. We are grateful to never walk this alone ❤️

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7 thoughts on “November 7, 2019– Day +49

  1. I have been a silent prayer partner for Bo and your family, and want to rejoice with you at the progress your sweet Bo has made through this long journey. Praying God will continue to heal him, and amaze you as He cares for all of you. What a miracle Bo is, and a testament of God’s faithfulness and care, down to the smallest cell in his body. Praying tonight for his gut to work as it should.

  2. What encouraging news! So good to see your little boy free from the IV tubes and enjoying the walking toy. What a milestone this truly is! We celebrate with you and will pray continued healing and balance throughout his body so you can all go home! May God continue to give you His sustaining power as you walk through the ups and downs. Can’t imagine how much there is to process as you prepare yourselves for the next phase of this journey, but remember that God is always one step ahead – He’s got this and He’s there for you, no matter how you feel! Love and blessings……

  3. Love the pictures of sweet Bo!!!! Celebrating the faithfulness of our Heavenly Father with you, Chloe!! Will pray specifically for Bo’s gut and will also continue to pray for peace and overall healing.
    You are loved!!!!!!

  4. He looks so much stronger and happier. Such a darling little guy. Praying for his body to accept food again, and for an unrelenting healing trend. So thankful he has come this far, and that you all have been able to bear it.
    Much love and strength,

  5. Dave and I were elated to read your update this morning!
    Praying for normal for all of you! I know you long for normal again in your lives. With the list of answered prayers, you are getting closer! Hugs! ❤️

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