Setbacks and PICU after Chemo Round 1

Dear Friends,

People have been saying we should expect setbacks along the way and here we are with just that. Please pray for Amos as he’s been readmitted to the Pediatric ICU floor here at CHOC. It’s been a very long 10 days in the hospital and just as we were on the verge of a healthy discharge, things unraveled and we’ve found ourselves back where we started in June – on the 6th floor.

The medium length story is that Amos was doing fine after his first round of chemo, which ended on Friday, but we remained inpatient at CHOC in order to complete a sleep study this past Tuesday night. The sleep study was meant to determine why Amos was having fluctuations in his oxygen levels at night, and it raised some concerns regarding apneas (absence of breathing) when he’s asleep. As a result, it raised the possibility new machines to assist Amos at night. There were many questions mixed into the sleep study results, many of which are still unclear, so the proverbial waters have been muddied and Amos’ care has definitely gotten more complicated.

But the good news is that because of the sleep apnea we decided to stay an extra night rather than go home yesterday. Last night we transferred upstairs to the PICU and Amos quickly got a fever and had a vomiting and de-saturation episode that would have been very, very frightening to manage had we been at home by ourselves. We are so very thankful to the Lord for once again intervening in our plans with something we found disappointing in the moment but ultimately was working out for our good. It’s amazing how your attitude can change so quickly – from grumbling to rejoicing in the Lord’s protection!

So now Amos’ team is on a “fever hunt”. He’s spiked three fevers and his Mickey button (the feeding tube to his stomach) is almost certainly infected. He has a variety of tests today to rule out all kinds of things and then we wait on blood, respiratory, and urine cultures to make sure all is well on those fronts too. Amos has been incredibly brave but he’s definitely not feeling well and he’s not enjoyed many aspects of this most recent ordeal. It is very difficult for us to see him struggling.

We feel tired, deflated, thankful, and discouraged all at once. The apnea issues are frustrating to run up against because it will require Amos to be in the PICU anytime we admit to the hospital rather than on the oncology floor where Amos has grown to know and love so many. The conditions of the sleep study, considering his current infection(s), seem inconclusive but we have to go with the conclusions we have until we reevaluate and Amos proves he’s able to support and sustain normal breathing patterns during sleep.

The infection is a concern as well. Amos’ blood counts are at their lowest right now due to the chemotherapy so he is especially vulnerable to little things turning into big things.

Please pray:

  • For Amos to improve in these next 24 hours – for no more fevers and that all the tests would come back negative, pointing to the infected G-tube or something similar as the offending culprit in this scenario. A much easier easier fix than other things.
  • For Amos to be able to come home soon and that we would all feel comfortable with the timing of this discharge. (And that we would be patient as it seems like discharge could happen in a few days or in a week or two. We can’t really know, and that’s a recurring theme that we should be used to by now but it’s still hard).
  • For Amos’ sleep apnea to resolve quickly. There are so many practical complications that are arising because of this.
  • For Amos’ courage and strength. That his spirits would regain buoyancy and that we would know how to encourage him, especially as we face his hair loss in the next few days, which could be very discouraging to him.
  • For Amos to continue to progress in speech, feeding and swallowing, and physical therapy, which have gone fairly well this week, but left Amos pretty tired and grumpy considering he wasn’t feeling well otherwise.

Praise God for His very present care for Amos and our family. We know He is watching over us and over Amos.

“And the ransomed of the Lord shall return
    and come to Zion with singing;
everlasting joy shall be upon their heads;
    they shall obtain gladness and joy,
    and sorrow and sighing shall flee away.”

Isaiah 35:10

Love in Christ,

Kelli, Will, Amos, and Luke

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20 thoughts on “Setbacks and PICU after Chemo Round 1

  1. Praying for your little guy and you both. I am a friend of Linda Ross and used to go to Chelten. I’ve been following your posts since the beginning. You are both an inspiration to us all. The mcnallys send their love and prayers.

    Sent from my iPhone

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  2. I am praying for you all, and especially Amos. I pray he will experience a quick recovery from this setback. Love and prayers, Ed and Jackie

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  3. Father God, I come before you now and lift Amos to You. Creator of our fragile and complex bodies, see fit to draw this set-back to a quick resolution. Thank You for knowing what is best, while we only think we know. Thank You for keeping Amos there, in that safe place- for him, and also for Kelli, Will, and Luke- as being home without on-hand medical personnel during this recent episode would have been beyond the scope of our imagination. Father, You are precious to us, and Amos is precious to You. More precious to You, Father, than he is even to his own family- as hard as that is to comprehend. Please, grant Your peace to these dear ones tonight. Grant sleep…and in Amos’ sleep, Father, grant healing, I pray. In the name of the Lord Jesus Christ, Who loved us enough to die for us, Amen.

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  4. We are sorry to read this complication. we feel the Lord has a master plan for Amos and He will continue to show you the way. We will continue our prayers for all of you and look forward to another post from you. God Bless

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  5. Dear Kelli, Will, Amos, & Lucas,

    We are so sorry to hear this, and hear a tiny bit of your frustration, thankfulness, and weariness in your words and sentences.

    May the Lord have mercy on Amos, and thus on you all (and all of us as well); may he fill your hearts with peace and grant you rest, wherever you find your selves.

    Much love from our hearts to yours.

    fred

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  6. Sending Hugs and Prayers from Newton. Thank you for this update, praying little Amos gets through this setback quickly and is able to rest and gain strength, so he is able to be strong and healthy when he goes through his next treatment.

    Love
    Walkers & Matsens

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  7. So sorry to hear of Amos’s most recent set back. I am happy you are back in the States and Amos is being so well cared for. I pray that they will find the source of the infection and that Amos will feel better very soon, that his night breathing will improve. You are all always in my prayers stay strong and faithful.
    With lots of love, Eva xoxo

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  8. Thank you for keeping us updated on Amos and I am praying for him and for your family. I am a friend of Linda Ross from Chelten. I appreciate your trusting God and your thankful spirit in the midst of the challenges.
    Jeanette

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  9. Dearest Will and Kelli,
    Our hearts and prayers go out to you all on a daily basis…and then some. Our Lord has told us that He will not give us more than we can handle, but even in His strength the battle is weary at such a time as this.
    Lord Jesus, we lift this dear family up to your throne and pray your loving, healing hand on them. Give them the Peace that passes all understanding. Make their yoke easy and their burden light, as you alone can do. Show them clearly that you are able to do all and above whatever we think possible. Heal Amos and restore him to perfect health. We ask this in the Mighty Name of Jesus.
    Amen!
    Jim and Janet

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  10. Kelli,

    CS Lewis in The Horse and His Boy: Shasta’s heart fainted at these words for he felt he had no strength left. And he writhed inside at what seemed the cruelty and unfairness of the demand. He had not yet learned that if you do one good deed your reward usually is to be set to do another and harder and better one. But all he said out loud was: “Where is the King?”

    I don’t know what you are going through but I am again and again encouraged that you are asking us to praise God in it all.

    With love and prayers from a fellow Lewis fan, Anna

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  11. Hello Kelli and Will, Amos and Luke,

    I’m Neha Buddemeier’s sister-in-law and she graciously shared your blog with us many months ago. We’re praying for sweet Amos in this trying season! I can’t imagine how hard it is to watch your little guy go through these stages but it’s so powerful what you wrote….

    “We are so very thankful to the Lord for once again intervening in our plans with something we found disappointing in the moment but ultimately was working out for our good.”

    Sending our love and prayers in upstate NY!

    Jessica, Nilay, and Cristiano Saiya

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