Except now they are green hazel. This is from Monday and you are seeing things correctly. Ryan went back on the vent late Friday after trying to fly on his own off the CPAP machine. His body was very clear in communicating that he needs support to breathe. Interestingly enough, once on the ventilator, his CO2s (the level of Carbon Dioxide your body is keeping) decreased but his PO2s and O2s (the amount of oxygen in his blood) remained pretty much unchanged. This got the team to thinking….
Combining this information with the fact that Ryan has been struggling with random episodes of volatile sats over the last few weeks, the team began considering that in addition to the respiratory issues (collapsed lower lobe in the right lung and weakness on the right side of his diaphragm) there must also be a cardiac issue.
Before Friday’s intubation, they were recommending a fluoroscopy to get a more precise measurement of Ryan’s diaphragm movement, but with the addition of the ventilator, there is no way to assess what Ryan is doing and what the machine is forcing. So that is off the table for now.
However, since there are possible cardiac issues, Ryan is scheduled to be in the heart cath lab once again Tuesday around noon. I lost count, but I think this is his fourth heart catheterization in his little eight months. They will check to see if there is a vein that has opened up (I know the body produces veins throughout life and it’s possible one opened in his heart that is taking blue blood back into his blood stream before it can be oxygenated causing less oxygen in his body, so I think this is what they mean by one ‘opening up’) and will check to make sure his pulmonary arteries are not kinked from his recent Glenn procedure.
Please pray for his safety. While caths are routine, they are major procedures with major risks. So while we throw these things around like they are no big deal sometimes, they are. So I’m asking God to protect my son once again (knowing full well that He protects him every day).
I also ask that you keep the girls in prayer, especially Natalie. She’s been displaying some odd behavior in the last two weeks (as in, refusing to participate in ballet class) and today while I watched her spinning in the corner of the ballet studio all alone while the class went on without her, I racked my brain for any changes to occur in the last few weeks. The only thing I came up with is the visitation policy at the hospital. She mentions Ryan every once in awhile repeating what I told her – that the girls can’t see him until they get a shot, and now, that they can’t see him for two more weeks. Over the weekend when we were talking about who was coming to her birthday party she asked, “Can Ryan come?” It broke my heart. So, I’m going out on a limb here and suggesting she is feeling some anxiety over the fact she no longer can see her brother.
I’ll post as soon as I know anything from the cath…
(c) 2016 Leighann Marquiss
Comments (16)
What beautiful eyes your little boy has.
Keeping you in our prayers…
Praying! Love, Marmi
May God just continue to watch over you and praying for all of you.
Praying!
So frustrating it must be. I can’t even imagine. Praying girl. Hold your head up.
Praying Ryan’s cath goes well.
I am praying that they will find some answers with the heart cath or other tests,… and that they will be fixable and that your little guy will be able to go home soon. I know his sisters are both missing him…bless their hearts. And this has been such a long trial for all of you.
May God’s grace be sufficient in all of this and may He carry you through!
Love, Linda @ Truthful Tidbits
Praying for your sweet baby boy. He is such a symbol of strength and perseverence. Also praying for you, your husband and your precious girls.
Blessings from Arkansas!
Leslie
We are keeping Ryan and the girls in our prayers!! I’m sure Natalie will be fine because I can only imagine how difficult it is for her. Josh gets like that when he cannot go come to Ryan’s doc appts and he is 12 years old. It’s never easy. Keep us posted on the cath…BEST WISHES AND GOD BLESS!!
http://www.ryanschd.blogspot.com
aw:( that broke my heart to hear the end of your paragraph.
That she wanted Ryan to come to her party.
Your family is in my prayers.
Sending thoughts and prayers for you and your family and especially little Ryan and your girls.
Poor little Bub!!! And poor big sisters! Praying for you all!!!!!!
Natalie is probably internalizing what she can feel and see, even though you have been doing a terrific job in keeping your girls in their normal routine. Kids can sense when things just aren’t right (even though to her, Ryan being in the hospital is “normal”) and she is trying to deal with what is going on around her in her 5 year old way. When my youngest daughter was born very premature and was on a vent for a month or so, my older daughter (who was 6 years old at the time), seemed like she was handling everything fine. Her life went on as normal…she went to school, had her birthday party, had friends over to play, etc….but only saw her sister thru a window into the NICU. Anyway, when our youngest came home, that is when our older daughter started acting like she had breathing problems and would freak out and go hide in her closet if any of the machines went off. We just reassured her that her breathing was fine and all the noises were normal and she eventually felt at ease with everything. Your son and his hospitalization are more extreme, but I think in Natalie’s mind, she could pretend things were normal while she could see Ryan…now she can’t see him, so it is hard for her to process that. Try not to worry about her…kids are resilient and she will adjust to her new “normal”. I am keeping you all in my thoughts.
~Wendy in MD
Thinking about and praying for all of you! I’ve been wondering how Ryan is doing…I’m just sorry to hear it’s not a good as it could be.
My heart was so sad reading about your girls. I know it must be heartbreaking to see them struggling to deal with things when there’s really not alot you can do about it.
I’ll be praying for God’s grace and that He will bring comfort to all of you until things are better.
Love,
Tyra
Praying for your little guy and doctors wisdom for him. Also for your little girls – I’m sure they love their little brother to pieces and want to be near.
~ Joann
Sending many prayers your way. For Ryan and easier breathing, for his heart issues to be simple. I pray for wisdom for all of his doctors and nurses and those involved with Ryan on a daily basis. I pray for the girls, that their hearts are protected and this “issue” will just be a passing thing. I pray for peace and calm for mom and dad as you go. day to day with everything you do.