I started this email around 3 and was almost done then POOF! I lost it.
Most of you have already seen Trey’s earlier post about seeing Tyler open his eyes and look at him. What a great start to the day!
We also got the opportunity to meet Schulyer’s grandparents and Aunt. As you remember after Schulyer rescued, Tyler out of the water, it was Popi and another person who performed CPR. What a great family! If they will have us we would like to consider them part of our family as Tyler’s “Bro-Grandparents”. We eat out on Christmas Eve, so pencil us in. 🙂 ha ha. In all seriousness, they were where God needed them to be and he gave them the strength, courage; and knowledge to do what they did that day. Please say a prayer that they find peace and comfort because I am sure it is emotionally taxing.
To everyone on Bald Head Island: to those who directly helped Tyler, to those who assisted with the coordination of getting the Med Flight, to those of you that helped Schuyler’s family and those who have and continue to pray for Tyler. We are so thankful and grateful. I hope that one day in the near future my family will be able to thank you properly in person. Does anyone know who else performed CPR? I would love to find out. Feel free to pass this Caring Bridge site out to anyone who wants it and also keep those prayers coming they are really working. So, we had another “Sedation Vacation” this afternoon. Want to know what its like? The doctors, nurses, and respiratory therapist gather round and someone rolls out a Margarita machine. I grab my purple eyeliner and awayyyyy we go! You can join the party but you must have purple eyeliner, wash your hands, and be able to rock a fancy smancy paper thin yellow cloth gown. It’s all very VIP.
In reality what happens is the nurses back off the sedation and watch for signs of movement. They want to know how long it is taking for his body to respond and how he reacts. Today around lunch he opened his eyes a couple of times and looked at me. And what was awesome is that he moved his mouth like he was trying to speak. (the nurse agreed so I can say this with confidence. Although I suspect he was trying to ask why I was wearing purple eyeliner. (But YEA!)
These awesome nurses tell me it is like coming out of a fog because he is so heavily sedated. It really is a double edged sword because I love seeing him awake and seeing movement but it is so very hard to think how confused and scared he must be waking up. He keeps trying to move his arms and legs but he is being held down and I am sure all the tubes around his neck and in his throat isn’t exactly pleasant. I have to keep reminding myself that these hard times are all part of the healing process and are actually positive. I just stroke his head and tell him over and over how much we love him, how proud we are of him, that he is safe, and how many people are praying for him. I can only hope and pray that it gives him comfort.
Each time a sedation vacation takes place (2x a day) they want to try to extend the time to allow his body to adjust and the goal is to have him be awake but relaxed. Our new “command” goal is to have him give the thumbs up. The ole’ hitchhikers sign if you will. When that happens I am told that’s a big positive sign from a neurological standpoint. ** do not pick up random people on the road with their thumbs up. It means something completely different. Just a little F.Y.I.
Right now our little “hump” is getting his blood clotting stabilized. Based on Tyler’s blood levels and what happened to ECMO1 the doctors suspect that the cause could be something in his blood that is not compatible with the blood thinner drug they are using. It is like a puzzle in that each piece much match or the drug can’t work correctly. The doctor has consulted with a colleague at Chapel Hill who recently came from Michigan which I am told, is the “Hub” of the ECMO machine world. There is a test that they are running but it is expensive, has to be sent out, and will not be back until Wednesday. Rather than wait till Wednesday both Chapel Hill, Michigan and our doctors are leaning towards it being an issue with Tyler’s super power clotting ability and they are slowing beginning to make adjustments.
This whole hospital has really taken a special interest in Tyler and it seems that everyone is keeping tabs on his condition. One of the nurse administrators came today to check on Tyler and I found out that her husband was one of the flight nurses that brought him in. By the time she left my purple eyeliner was gone. Someone needs to make an “Ugly Cry” line of eye makeup. Just sayin’
So as we stand right now, Tyler is still on life support, but showing signs of improvement. He has a long long road ahead but please keep those prayers coming.I can assure you each day and want to encourage you all that they are working and that your efforts are not going to waste. Some of you may not know that Tyler coaches Little League Baseball which he has a passion for. This year alone he has coached three teams: Spring ball, All Stars and an Invitational team. His All Star team made it to 2nd place in our division of the state which is quite an accomplishment. He adores those boys and they really look up to him as a positive roll model. We have been watching the Little League World series together and before he went on vacation I told the kids that next year we were going to Williamsport, PA to watch some games . He said “Mom, we don’t’ need to go next year because my boys are 10 now. In two years they will be 12 and we are going to the World Series then.” That’s my boy!
So, until tomorrow. Keep praying and keep those prayer chains going