So, we had what the doctor called a “half step” back. Tyler is having some problems with his kidneys and is being put on dialysis to filter his blood of fluid. At first we were concerned he would have to go back into surgery for ports to be inserted but soon realized that he already has the correct “equipment” installed. Sort of like computer drivers. 🙂 The tubes and lines already in his neck will work just fine as I understand. That was a huge relief to us because his chest and neck area area on his left side is pretty damaged right now. Remember I talked a little about his “tie dye” chest? Well that area around his chest in neck has begun to blister and the skin is paper thin. They think due to all the meds they had to push into him in such a short time. It will heal over time, but we are glad that that area can be left alone for a little while. Right now they calculated that Tyler is holding approximately 40 cans of fluid in his body. What a hoarder right? The doctors are pretty confident he will have no long term kidney damage. AND it’s not uncommon for the dialysis machine to be needed. Nor will he need it long. Just an aid in his recovery.
This morning on our way to the cafeteria we rode the elevator with an older man who was pushing a wheelchair with a box in it. He said he had just driven in from Nashville to deliver some medication for a patient. Being here has really opened my eyes to alot of behind the scenes events we take for granted. I started thinking about this man driving overnight from Nashville and I gave him a quick big hug and said “thank you for what you do.” We parted ways and I started my hunt for Cheerios because at the ripe old age of (cough, cough) I still love Cheerios. Without milk. When we got back to Tyler the nurse began giving us an update and said that his medicine had just arrived from Nashville and was being given to him. Trey and I both looked at each other in complete astonishment! The man we had JUST seen in the elevator about an hour prior! We believe that was the very man and that large white box we saw in the wheelchair was actually our son’s medication. Isn’t that crazy wonderful?
We also found out today that the surgeon who actually performed the ECMO surgery actually graduated from UVA (Go HOOS!) and his parents actually live pretty close to us? How that for a coincidence? You see, those prayers are putting people exactly where they need to be.
Trey is sitting beside Tyler right now holding Tyler’s hand and I am looking over there and see no less than six different computer monitors behind him. And on his left side there are three machines. One that looks like a large college refrigerator that is hooked to the ECMO machine, the actual ECMO machine itself, and the dialysis machine which is now hooked up and doing its job. I am not counting the IV drips but there are so many things hooked up to this kid. Things that will bing, bong, and, buzz but the nurses are right on top of everything.
They just moved Tyler to a new bed which one of his doctors called the “Cadillac”. I kid you not when I say this bed has a touch computer screen on the side of it. Not only does it have WIFI but will help prevent any bedsores and also fix the issue we had of his feet touching the foot of the bed. He has a corner room with two windows which I call the “Corner Office” So the kid is ballin’ in his Cadi in his corner office. Right now his respiration machine is at 60% down from 100% which is very good. They want him to be around 40% before they will start backing off the ECMO. So we are moving in a positive direction. I continue to be very encouraged and hopeful.
I wanted to say also of how proud I am of Emily, Tyler’s sister. She has really stepped up around the house, cleaning, doing laundry, taking care of our 2 cats, 2 dogs, and 2 fish. I am so proud of that girl it is unreal. I am truly blessed to have such great kids. On top of almost loosing her big brother she is starting a new high school next week (for visual arts) that is across town and won’t be around too many familiar faces. She is currently back at our house with Trey’s parents and Trey is probably going to come home on Saturday or Sunday before Emily starts school so they can get a routine down and just get back to some normalcy. Thank you. Those two words don’t seem like nearly enough to express the gratitude and love from family, friends, community, strangers, and the team working with Tyler.
I will ask you to continue those prayers and thoughts because they are working (remember elevator man) they are showing up in all kinds of places.
Thumbs up! (we didn’t get to work on that today. New dialysis machine and moving to a new bed are hard on a body. But that continues to be our short term goal.