I haven't updated in a couple of days! We have had a roller coaster of ups and downs that I have come to learn is just part of life in the PCICU. We have also tried to have a little bit of "normal" family time with the girls at our own house, so I haven't had much time to update with the back and forth.
It seems these days we take 2 steps forward and 1 step back. I wouldn't say my faith has wavered, but I would admit to having some emotional moments and having to be reminded that this is all in God's hands! Chris has been a rock, available for every need, to wipe every tear, and to encourage and uplift. He has been a peace and presence through all of this that has amazed me. I am so thankful to God that He chose Chris for me. I can't imagine doing this with anyone else.
They have removed most of Ty's lines - he is down to: 1. His chest tube (this drains his body cavity of excess blood and fluid) and it should be removed "by this weekend." 2. A pic line that they use to administer medication and draw labs. 3. His feeding tube in his nose. 4. Vapotherm - nasal cannula delivering oxygen. ...and a few little wires to monitor his heart rate, pressures, and temp.
They did a scope yesterday and discovered that his left vocal cord is paralyzed. This is common after intubation and after surgery on the aorta. This is where my special prayer request comes in. Please pray specifically that his vocal cord will be healed. This type of issue can resolve on its own, but it can take months to even 2 years. Sometimes intervention is needed in the form of feeding and speech therapy and sometimes even surgery. We are praying that God will heal Ty's vocal cord. Right now it can be a challenge to eating, so we are just hoping it will resolve with God's prompting and he'll be able to eat like a champ again after he gets off vaoptherm. That's our other request - pray that we will be able to get off vapotherm. We are kind of in a holding pattern until we can get that thing out of the way! It is on it's lowest setting, but every time they take it off his respiration is too high and back on it goes. Hopefully this will be our next big step - no more vapotherm!
This little boy is so loved already! His sisters adore him. Ava Grace is head over heels in love and just gushes over him every time she gets to see him. It melts my heart!
The good thing is we are able to hold Ty more - that is a very good feeling! He is also much more alert and interactive and that is so encouraging!
Please keep us in your prayers. It is a daily challenge to balance life with the girls and with Ty. We spend a lot of time on the road trying to do it all.
We are so grateful for all of the prayers and support. We are most grateful that our little guy is showing slow improvements each day. Even though we have seen setbacks, when we look at the big pictures he is getting better and better and closer and closer to coming home!
I'll try to update again tomorrow. For now I am hopping off here to go snuggle that sweet boy and then head back to get snuggles from my Ava Grace! Gotta fit it all in!
Lord, please work through us and our special little boy. We know you have great plans and pray that you will use us and our situation to bring glory to your name! Amen.