We are in day 27 of Ryan’s post-Fontan hospital stay and we’re tired. Tired of not sleeping through the night, tired of being away from our family, tired of the hospital, and Ryan’s tired of being uncomfortable.
Overall our spirits are high, but I can see cracks forming at the foundation… his crying every time I leave his sight, his refusal to let the nurses do his vitals, his defiance with the PT/OT team who really are just trying to help.
Cracks are starting to form around my foundation too… I’m choosing to embrace the hard, but honestly, this week is heavier than the others.
I’m tired of over thinking every little thing – like why Ryan’s stomach hurts, how much he’s eating, drinking, and then processing through his body, how to fix his high potassium and low sodium, learning new medications or listening as old ones are on board once again until he heals. I’m tired of advocating for things that I feel are important to keep his sense of normalcy while walking the fine line of letting the doctors do what they do best to get my son out of here and on his way home for good.
Weekends typically recharge me, but I think my tank was less than full when my hubby and girls drove away this time. I feel like a battery that’s been charged too many times – each weekend I feel a little less on top my game than the week before.
The good news is Ryan’s ascites seems to be going down. He’s definitely more comfortable and complaining less of his stomach being tender. His tubes continue to put out drainage, but that too, is trending in the right direction. (Hallelujah!) We are so close to being under 100 ccs, I can taste it. I’m so hoping we’ll be able to leave this weekend, but at the same time, am trying to protect myself by not making that part of the plan! We all know there’s no planning when it comes to living in a hospital.
The girls are starting to break down emotionally. Ainsley and Natalie begged to go home with Henry this week – they were having a wonderful time with their cousins, but Dorothy was right when she said, “There’s no place like home.”
Henry is tired too. He keeps telling me he just wants me home. When he visits we pretty much just sit on each other… it embarrasses the kids. We are typically parents and really don’t mind embarrassing the kids a little. Haha! It can be a little awkward when the surgeon comes in on rounds and you’re lying on top of your husband on the couch but eh…. it was G… don’t worry.
So please continue to pray that the ascites will continue to go down, his chest will stop producing so much fluid and he’ll react well to the medicine changes that are necessary to manage his care.
We know things will work out – it’s just a matter of time. We appreciate the prayers and support from everyone.
Thankful Ryan feels better, praying for complete recovery. It’s understandable patience is dwindling for everyone…27 days is a long time, but you’re one day closer to getting back to the Burgh! Hugs from Naptown.
I have been thinking of you and your family daily this month. Prayers going up for you to keep strong and Ryan’s healing. I feel for you and all the emotions and energy you expend each hour. Hoping you can all be together under one roof again soon! Praise God for the progress made so far. Praying for more progress tonight and tomorrow.
Oh honey, I know this is making all of you grow weary! We are praying you will be able to take Ryan home soon and things can get back to “normal” again!!!
When our Anna had her surgery it took nearly a month for her to get home…and all of us were weary too. So I remember how drained we all felt.
Hang in there brave soldiers! We are holding you up in prayer!
Aw, still praying for all of you. This IS a hard time, but it WILL get better. Praying that you can get some sleep, that Ryan continues to recover, and that you can see the yellow brick road home to Pittsburgh soon. (actually parts of Pittsburgh really do have yellow brick roads…some are still visible, some are buried under pavement). Peace to you!
Way to keep it G rated Leighann. You guys are too cute 😉
Ryan is looking so much healthier in this picture! Praying that he will continue to progress and be healthy enough to go home soon!
Praying for you and your family, for renewed energy, a renewed spirit and strength for each day. I have followed your blog since the beginning. (I know Amy from Good News.) I admire your strength over the years and how your family has always given God the glory. Now it hits home even more, as our first daughter, Arwen, was born July 11th and didn’t breath on her own. So long story short, she’s spent the first few weeks in the NICU and is still there, but getting stronger each day! Anyways, Ryan’s story has given us hope many times over the last few weeks. What a mighty God we serve!! Love and prayers for your whole family. We’ll be praying for Ryan to keep getting stronger and to be able to go home this weekend ❤️
Thanks for commenting, Jenny. I pray that Arwen is able to go home soon, too.