Just a little update on baby Ryan:
Heart
The shunt seems to be doing its job. We are a week out from surgery and Ryan’s Ox sat levels are stable. They are stepping down on his sedation medication in preparation for trying to get him off the ventilator. He just got his last dose in the wee hours of Friday morning, so we look forward to him being more responsive.
We still need the pulmonary arteries to grow. The cardiologist plans to do an ECHO sometime soon to see if she can see what the PAs are doing. She mentioned perhaps doing it this today (Friday), but we are learning that can mean ‘sometime soon.’ She is unsure if she will be able to see anything conclusive – sometimes shunt placement can block the view of the PAs.
Chest
Now that Ryan’s heart is stable, the next goal is to get him off the ventilator. There has been a lot of discussion on how to get that to happen. Most the surgeons (heart, plastic, general) are hesitant to do anything at the moment so they’ve started something called CPAP trials.
CPAP trials are used for various reasons, but in Ryan’s case, they are doing what they call sprints. The ventilator is put on a setting where the patient initiates the breath and the ventilator responds by filling the lungs (on regular setting, the vent initiates the breath). This works to strengthen the diaphragm muscles. The cardiac surgeons feel Ryan can breathe with his chest open, but his omphalocele is compromising his diaphragm.
If the CPAPs don’t work in the next week (read weekish), they will discuss doing a surgery just on the diaphragm/omphalocele, leaving his heart exposed. There is some discussion about ‘stabilizing’ his chest (i.e., constructing some sort of prosthetic until the Glenn surgery), but there are no concrete conclusions regarding the chest at the moment.
One of the things we are learning is that plans in the CICU are fluid. They change as the team talks together and tries to come up with the best course of action. When we hear ‘this week’, we think ‘this week’, but the docs really mean ‘this weekish’ or ‘after some time’. We are trying to be flexible and not become disappointed when things don’t happen as we expect.
The girls visited Ryan several times this week. They both basically come in, climb on a chair to say hi to Ryan, then jump down and get on with their plans. Natalie’s include the hospital T.V. or a DVD. Ainsley, whose attention span does not include sitting for long periods of time, engages in pretend play. This week she was a doctor. The nurse let Ainsley wear her ID badge and Ainsley said, ‘I a doctor.’ She made her doctor house behind my chair and walked in and out, in and out, treating her patients (the nurse, Natalie, and me). Natalie quickly informed Ainsley she did not have a sore tummy (the diagnosis Ains gave her) and only wanted to watch t.v. The nurse and I became the “doctor’s” only patients and she went back and forth between us putting on pretend band-aids. At one point I called her by name and she looked at me sternly and said, “call me doctor!”
As you can see, the girls are having no problem adjusting to life in the hospital.
(c) 2016 Leighann Marquiss
Comments (8)
Sorry I missed seeing the girls yesterday. I enjoyed meeting Ryan and visiting with you. He is a precious little miracle. Hope to come down sometime again soon. Love ya.
Hi!! Ryan is such a miracle, he is doing so well!
It is so good to see the girls adjusting to this new environment so well. 🙂
God Bless!
Suny
We are praying for you here in Louisiana. Janice Alwell (Keaton)gave me the blog site. I know that God can work miracles and it looks like He has already. Keep the faith.
Love and prayers,
Jodie Crooks
Just stopping by to check on my little boy friend. Any news of “plans” is good news. AMEN. God is good and I can’t wait to see his plan for this little miracle boy.
Has the blog grown on you?
Your sister doing header?
It was good to see Sweet Little Ryan again. He is looking alot like his Dad! Prayers, Hugs & Love from Marmi
Leighann, you are such a beautiful spirit and have such a lovely way of being honest in your blog posts. Thank you for allowing us to view these moments with you. I love that you are seeing the need for your own patience when you are such a girl on the go. And I praise you for your focus on the positives. It is so easy to plunder in the midst of it all, yet you are holding your head high. Yes, I know it is not an easy posture to maintain, and you certainly do not have to maintain it all day and all night, but Girl, I’m proud of you. Slow and steady wins the race. Enjoy that book you found. And leave the power cord at home every once in a while. It brings blessings of its own. Is there a Fisher Price doctor’s kit in your future?!
Glad things are going well. Are you at a ‘teaching’ hospital?
what a positive post about ryan (and the girls). i know your “normal” is far from normal, but it sounds like y’all are adjusting to the day to day flow of life there.
just wanted you to know that we’re thinking of you, holding you up before our Father, and wishing you every blessing.
How is it going with Ryan off the sedation?