Ryan’s Fontan – Post-op day 5

July 6, 2015/Living with Special Needs


Ryan’s day today was pretty good. He still slept a lot but we had several increments where he was up for over an hour either eating, complaining, or moving from the bed to the chair or the bed to the wagon or back again.

We had a slight concern over kidney function (he had very little urine output yesterday) so the team changed some things up and he’s peeing again. We will run labs in the morning to see what his kidney numbers say.

He took a few assisted steps today – – it’s amazing how weak he’s become in the last six days. It’s hard to watch him struggle to sit up, stand, and walk.

His biggest complaints are all the wires running to his body – he wants to be rid of all his IVs, tubes, and medicines. He’s asked several times if he could take his nasal canula off and when getting a negative response, being his sweet ole’ self he says, “Okay.”  Whining… but still complying.


He’s said some really funny things lately. The funniest things have to be:

1. “Officer! Officer!” or “Hospital! Hospital!” when calling the nurse.

2. When he was having trouble urinating, I pressed on his bladder to help him… his eyes popped wide open and he said in a relived voice, “I think I’m doing it.”

3. When the nurse and I were moving him out of the wagon, he said of his accord, “Okay, on one, two, three…”

4. As I was moving the pillows around to try and make him comfortable he said, “Oh…. oh yeah,” when I got the combination correct.

There have been some not so funny moments too where he’s demanded water, or screeched but not been able to tell us what’s wrong, or insisted I take him home, to the park, or to the Ronald McDonald House. He very seriously looked at me this afternoon and said, “I’m getting out of this bed.” To which I replied, “No you’re not.”  I won. Go figure.

I must say we are all very pleased with his progress. It’s always a few steps forward and one step back, but so far, his body is responding to the Fontan, he’s eating, he’s acting appropriately given the situation, and he hasn’t had any real complications.

Please continue praying that all goes well. It’s all been a little too hard to believe. We thank you for everything so far.

Comments (7)

  • Johanna davis / July 6, 2015 / Reply

    Bless his little heart. Still praying for him. Love you all.

  • Linda / July 7, 2015 / Reply

    Oh how very precious he is!!!
    Thanks for sharing the humor along with the hard times…I’m sure it helps to have something to giggle about!

    I woke up about 3am and checked my phone and saw this post..so I want you to know I am praying as soon as I finish this comment!
    Love, Momma Linda

  • Jennifer G / July 7, 2015 / Reply

    Father God please continue to watch over Ryan, Leighann, Henry and the girls. Meet each one of them right where they are, in the midst of their struggle, confusion, need and longing. Greet them with peace, calm, provision and love.
    We thank you God for the gift of humor, it gets us thru hard times to the good stuff. I praise You for the progress that Ryan has madeand for the wonderful care that he (and the family) are receiving. Amen.

  • Pastor Glenn and Judy Dryden / July 7, 2015 / Reply

    Be assured our prayers are among countless others going up for Ryan and your family.

  • Carrie / July 7, 2015 / Reply

    awww, the pix are heart warming.
    …I think I’m doing it–is a keeper.
    So sorry you have to be such a hospital pro.

    (Ask Nurse Amelia how many times a “praise the Lord” came from the restroom.)

  • Lisa / July 7, 2015 / Reply

    I am so excited to hear how well he is doing. I havent posted but I am reading and always praying. My friend has been in hospital all week and I have been watching her 3 great grands plus my 4 and trying to move at the same time, so my computer time has been nil.

    Mister Ryan and his spunk slays me, its always encouraging when the little ones just make things work with what they have. Praying for kidney functions to return to normal. Chest output to stop so tubes can come out now. Praying a sound mind and the energy of a teen for mama to get thru this week, so you both can go to the Ronald house this week.

    Love you guys.

    Hebrews 11:1 Now faith is being sure of what we hope for and certian of what we do not see.

  • Gail / July 7, 2015 / Reply

    Sounds like Ryan is making baby steps on his road to recovery…praying the Lord continues to place His healing hand on Ryan. Thanks for the update.

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