Ryan’s Fontan – Day 4

July 5, 2015/Living with Special Needs

We are four days post-op. They’re all starting to mesh together in my mind… hospital psychosis doesn’t take long, even for veterans. It reminds me a lot of the early days of having a newborn when sleep is intermittent – struggling between fatigue, monotony, and having a little being that you wish you could satisfy and can’t.

Ryan is doing remarkably well. He’s in the ICU still, but we have weaned of of the nitric oxide, are on a low flow oxygen of 2 liters/minute (down from 12 or 8, can’t remember now!). They removed the large chest tubes as planned and his smaller pigtail chest tube is still draining a good amount – -over 200 ccs during the day shift.

We’ve been able to take four wagon rides in the last 24 hours… 2 yesterday and 2 today. The girls visited and helped us with one of his rides yesterday (video on facebook). My mom brought them down yesterday afternoon… they were able to visit with Ryan again today after spending the night with Henry. We said good-bye to the four of them this afternoon. Tonight when I was repositioning Ryan in his bed he said, “I wish I could go with daddy.”  Me too, I thought. Poor little buddy.

He ate a small amount today and seemed more alert when he was awake. He is still sleeping quite a bit… I think because he was so sleep deprived the first few days.

I have no new pictures for you guys… my phone is acting up and I haven’t been able to send or receive any social media or emails for the last 5 hours so I can’t email the pictures to myself, which is sad because I have some cute pictures of him and the girls. I’ll try to update the post if my phone ever cooperates.

That’s about all for tonight. I’m hanging in there. I’m sad that Henry left – – he was my rock and bedside co-laborer for these last few days…. I’m sad that I can’t make all of Ryan’s ouchies go away, but mixed with that is the knowledge that he’s doing extremely well and that all of this is working toward a goal of health. If I could do it for him, I would though.

Please continue praying that his fluid output would taper off and he wouldn’t develop complications. His chief complaints are the tugging of the remaining chest tube and the soreness of his body from lying in a bed so long. We try to move him about, but he’s been tired so it’s few and far between.

Goodnight for now. Ryan’s sleeping peacefully and you know what they say – – sleep when the baby sleeps!



Comments (4)

  • Carrie / July 5, 2015 / Reply

    Thinking of you all. Leighann, so hope you are able to get some rest. Here’s to guessing you are an old pro at confiscating (stealing) pillows, blankets, towels, jello snacks, and even the tea bags at the nurses stations. You are such a trooper. Praying the “2 steps forward and 1 step back” are tolerable times.

  • Gail / July 5, 2015 / Reply

    Glad the girls and your mom got to visit…I’m sure Ryan enjoyed that. This picture is adorable! Glad to see him awake. Continuing to pray. Thanks for the update.

  • Becky / July 6, 2015 / Reply

    thinking of you. You have a very long rope and are the Master of hanging onto it – that is one of your finest gifts. I always love how your posts show your deep love and devotion to your hubby and kids….

  • Linda Hogeland / July 6, 2015 / Reply

    Well, it sounds like things are going pretty well…and that’s such good news! I loved the smile in the picture with Henry…it made me smile too! For just being 4 days I think this is really good progress. I know it seems long to you…but hang in there sweetie…all of this will soon be behind you!

    It was good that the girls and Grandma came to visit…and I bet Ryan loved seeing them. (Until they left, and he wished he could go with them!) But I bet it did wonders for him to have them visit. I hope they can come again soon.

    Are you taking notes and keeping a journal? There may need to be another book in the works someday where you share the next step of the journey. Ryan is so precious to so many of us….and we are all praying for him, and for you and the family Leighann! God has brought you through so much!

    I am thankful that I have been able to pray for Ryan over the years…and it makes me feel like a friend of the family! You are all in my heart!

    Love, Momma Linda

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