Ryan’s Fontan – post-op day 10 – aka the day pity came to town

July 11, 2015/Living with Special Needs
Yesterday was a pity party day for Ryan. He woke up cranky and spent most of the day weepy. He reminded me of me when I’m PMSing. This is no joke, people.

I felt bad for him so I let up a little. Let him lie in bed more than Thursday and tried to let him rest – although he didn’t end up doing any real resting until after dinner, which means he was up a little in the night. Argh!

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His chest tubes are still putting out drainage now that he’s moving around more and eating. And his chest is junky… So he really needs to cough but it hurts with the tubes stitched into his sides. Getting up and moving is really his best medicine right now.

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Not much has changed in the physical part. He still has a pocket of fluid showing on his x-ray, still has chest tube discomfort, and is still achy from lying in a hospital bed. He was able to wean off of oxygen support, with his sats hanging out in the high 80s and low 90s. The team is satisfied for now.

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We went outside again yesterday in the wheel chair and took a couple walks but I didn’t push him as much since he was sooo sooo beside himself most the day. Today we’re back to Operation Recovery.

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It’s draining to be the mom when you’re kid is sick and needy (heck it’s draining on other days too but more so right now). Ryan has fussed for his mom pretty much 24/7 for the past 2 days, even when I’m sitting right next to me. Definitely not great for my introvert personality, but reinforcements should be here tomorrow. Henry and the girls are here for the weekend so I’m hoping that will help our little social butterfly start feeling like himself again.

We have been receiving some cards and packages. Thank so much for sending your love and for praying for Ryan so consistently. We are still praying that he won’t have too much more of the chest tubes and that the pocket of fluid on his left side won’t become an issue.
That’s all for now. We are still in the ICU, but if he continues to be stable, who knows, we might be headed to the HKU one of these day soon.

Comments (5)

  • Gail / July 11, 2015 / Reply

    Leighann, sorry to hear that yesterday didn’t go too well. I am sure seeing his dad and sisters will bring smiles to Ryan’s face, and having them in town will give you a bit of a break. Praying for a restful, uneventful weekend for everyone. Thank you for your updates. Hugs from Annapolis.

  • Linda Hogeland / July 11, 2015 / Reply

    Sometimes cranky means they are getting better. (At least that’s what my momma used to say.) Hoping he will settle down and feel better real soon though. Love his sweet face and can’t wait to see his huge smile one day soon when he is feeling much, much better.

    Continued prayers for Ryan…and of course for you too Leighann…I can only imagine how hard all of this is. But YOU are a feisty little thing too…and I know with God’s help you both will make it through! His mercies are new every morning!

    Love, Momma Linda

  • Brenda / July 12, 2015 / Reply

    I am continuing to pray for your specific requests and also for your ministry and testimony of Gods strength, love, and faithfulness. You have made it 10 days!!

  • Lisa / July 12, 2015 / Reply

    Those are some long and uncomfortable days for the little Mister. Can’t blame him too much I would want out a long time ago too. Praying for you mama, these long days are so draining for you too. Praying for the pocket to go away and for the draining to be gone. Praying for no junk in his little lungs and that he will feel good enough to walk and play a bit. The PMS comment made me giggle tho, boys and men can really go thru that no joke… Love you guys and praying.

    Jeremiah 29:11 (NIV)
    11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

    Provervbs 4:23
    Above all else guard your heart for it is the wellspring of life (one of my life scriptures)

  • Becky / July 13, 2015 / Reply

    I think that Ryan and Mama are doing wonderful – much better than I did when I spent 10 days with an adult in the hospital and his needs were nowhere near Ryan’s needs plus he had an adult understanding of what was going on. I can only imagine your exhaustion and hope that you were able to get out and about a bit this weekend with Henry there to co-parent. We are continuing to pray for ALL of you. Becky

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