Garrett goes to Michigan

Welcome to Garrett's new blog!

We wanted to start a blog that you all can follow, on Garrett's journey here in Michigan. It has been a whirlwind week! Just last Sunday we had a great phone call with Dr. Green here in MI. He is the ENT that will be helping perform Garrett's surgery. He was so positive and really feels like this procedure is exactly what our sweet boy needs, to get him down and on vent settings, and possibly even off of his ventilator. We have been more concerned lately with Garrett's ventilation needs, his latest Bronchoscope showed that his left bronchus airway is not improving, and that it is pretty much 100% collapsed. His right has slightly improved, but is still very narrow. We have tried a couple times in the past couple months to try and wean some of his vent settings (he still is needing a PEEP of 20) with no success. We are hopeful that this procedure will help him. Dr. Green is very hopeful and optimistic and we ALL feel that this will give Garrett his best chance at getting better, and getting home. We would just love to have him at home...and his quality of life will increase substantially!

And so our journey in Michigan begins...

Earlier this week, we had heard that our Insurance was being contacted regarding all that we wanted to do in Michigan. This procedure is not FDA approved yet, so getting insurance approval was the thing we worried could be the trickiest. We had not heard much, as most of it was out of our hands, until Thursday night. It was our 5 year wedding Anniversary! My parents had stayed with Garrett while Jake and I went out to dinner to try and celebrate. We had just got back to Garrett's room at Primary's when our nurse received a phone call...from Michigan! It was now 9:00 at night, and she was told that we had been approved for everything and that they were coming to get him the next day! Talk about complete shock - I think I am still running on adrenaline!

On Friday around 4:00 pm, we got a call that said their team was going to be arriving in Utah at 9:00 pm to pick Garrett up! We were told only 1 of us could fly with Garrett, which actually worked out to be totally fine - since if you fly with Survival Flight you can only take a small duffle bag. I volunteered Jake to go, and I booked myself a flight to come the next day bringing all of our luggage. We have been told to plan on a month. 

Around 10:30 they arrived! The minute I saw their team of 3 there, I knew he was going to be in good hands! They were very attentive, and were asking Jake and I questions, and were so grateful that we knew so much about Garrett. There were so wonderful, and were in no rush at all. They were going to take all the time in the world, to make sure Garrett was comfy and doing well, before they left. We even helped them figure out his vent settings for transport! It took about 2 hours to get him stable and ready to go on their vent, and then it was time to fly!

It was hard, and so strange to send my two sweethearts away on a plane to a place I have never been! But, we just knew that Michigan is where we needed to go. Things happened so fast! In less than a week from talking to Dr. Green, Garrett was on a flight headed there - it seriously was a miracle. 

Here they are - getting ready to go in the plane

Garrett waving Bye to SLC and Hello to Michigan!

Transport went perfectly...Jake said Garrett's vent numbers were perfect and he was comfy the entire flight. They landed in Michigan around 6 am (MI time) on Saturday morning. And arrived to C.S. Motts Children's Hospital by 7:30 am. The Survival Flight crew stayed around while they made sure Garrett was settled on their ventilator and then he was good to go. They have a different vent here than Garrett has ever been on, which was a little nerve racking for Jake and I - but Garrett so far doesn't seem to notice that anything has changed. That is a good thing! He is on his exact same settings he has been used to, so that is very helpful. 

I arrived last night, and was so excited to be with my sweet husband and darling baby again! It's crazy how much I missed them - and it hadn't even been an entire day! We are now trying to settle into a new hospital, our 3rd one in 16 months, you would think we love them or something. Hoping this will be our last one we have to live in. The hospital itself is only a year old, the rooms are so nice and large, and the Ronald McDonald room we are staying in for now is on the same floor as Garrett - just right down the hallway. It is so great to be close, especially while we are getting him used to his new surroundings and helping make everyone familiar with him. The staff here has been so great! The nurses and RTs are so kind, and have made us feel very welcome. 

Tomorrow morning will be a big day, we are going to meet with Dr. Green (ENT) and Dr. Ohye (CT Surgeon) and discuss the next couple weeks. This week will mostly focus on: getting Garrett situated, keeping him comfy and rested, and taking a few scans in preparation for surgery. We will know more of the details of things tomorrow. For now...we are just loving our sweet boy. It's hard to believe that we are here, and that this is all happening! It's happened so fast - but we feel like it is exactly where we need to be. This is his chance at getting better...we have searched all over, and here in Michigan is the place we need to be. It has put Jake and I WAY out of our comfort zone, (I am a total home body) but it is all worth it! 

We will do whatever it takes for this cute face...

We hope you enjoy reading and keeping up on our journey with us!