Go Garrett Go!

Garrett has been continually getting stronger each day...it really is amazing to see!
Since that first day we switched to the Trilogy home ventilator, we have not had to go back to the ICU vent, CRAZY! For the first time in his life, my baby boy can breathe on a vent that we can go HOME with. He continues to do awesome on a PEEP of 5, and right now we are doing 3 sprints a day (1 hour trials where he switches to a CPAP like setting, where he can control the amount of breaths and how large they are on his own). He spends the majority of his days only needing room air - just 21% oxygen! Before surgery, and even a couple weeks ago he was still needing between 30-35% oxygen, but lately he's been rocking it on the same oxygen that you and I breathe. Who is this boy!? He is a Miracle.

Jake and I LOVE being able to see him breathe so easily. To see him be able to relax so fully and not have to be on such high ventilator settings. He is a Miracle. A living Miracle, that is the only way I can describe it. I was recently looking back to just 8 weeks ago when our journey to Michigan first started. It's so overwhelming to see how doors have just opened, and how great Garrett is doing. I never thought I would see the day where doctors told me that my sweet boy would not need a ventilator, I have always thought it would be Garrett and his vent. But, because of this airway splints, we are going to be able to get our sweet boy off the ventilator. And be able to give him a much more normal life, and a life at HOME. 

I wanted to give a little background as to why we haven't yet been able to go home yet. He is now on the home vent, so one would think we could leave the hospital...oh I wish it were that easy. Back in December, when Garrett was really really sick with Adenovirus, we were having to replace his Albumin (the main protein in plasma) and Immunoglobulins (antibodies that fight off infection) almost daily. He wasn't holding onto either, and was struggling at keeping his levels at decent values. His labs were continually bad everyday...we were replacing not just those 2 but magnesium, potassium, calcium, etc., and we could not find a formula that he could tolerate without it just going straight through him. He was not absorbing anything in his gut...and as a result we were having to get PICC lines, and put everything he needed through them. At first we thought that this was the result of Adenovirus and once we got rid of the virus it would get better. It didn't go away.

Before surgery, and even after surgery we were still struggling with these gut issues and protein losses. For the longest time we all, doctors included, felt like his airway and lung issues were completely separate from what was going on with his tummy. What Garrett was having was a condition called PLE (Protein-losing Enteropathy) PLE is the severe loss of serum proteins into the intestine. It is a condition you typically see with Hypoplastic-left heart syndrome, where your heart pumps as a single ventricle. We were so confused...why had Garrett been having such horrible PLE? Tetralogy of Fallot is not seen with a link to PLE, so why was this happening? It was bad enough, that we were really concerned that if we couldn't get it under control that he wouldn't be able to leave the hospital. He was needing such frequent replacements, and when we replaced it within 24 hours they were already down again. We really couldn't keep up fast enough. But, all the sudden once we were able to come down from a PEEP of 13 to 7 and switched to the home ventilator, we were noticing a miraculous thing...Garrett's labs started looking better. Albumin wasn't being replaced daily, and immunoglobulins were only being checked and replaced twice a week. Then 3 days went by and he wasn't needing IV replacements of magnesium or calcium. We were SO excited! We spoke with our Attending one night, and trying to figure out what was happening and how it was getting better. We came to the conclusion that because Garrett needed a PEEP of 20 for SO long (8 months) and we couldn't ever wean him down on that, that it was causing REALLY high pressures not only in his lungs, but in the venous return to his heart. In turn, it was almost mimicking a child with Hypo-plastic left heart after they have their Fontan heart repair. For those kids they have to have a heart transplant for it to get better, but in Garrett's case it was being able to get these amazing airway splints and being able to cut his PEEP by 75% what he was needing before (from 20 to 5). 

Garrett continues to teach us all! This is the first time ever that there has been a child they have been able to find, that has had this happen in result of needing high ventilator settings. Over the last 2 weeks, he has been doing awesome! We haven't had to replace his immunoglobulins OR Albumin going on almost 2 weeks tomorrow. That is AMAZING! 

These airway splints saved our Garrett. They not only saved his lungs and airways, they saved his tummy, heart, and every other system in his entire body. We feel so beyond blessed and grateful that things have worked out the way they have. We feel so thankful that Dr. Green and his amazing team here in Michigan have been spending years and years (even started all of their study before Garrett was born) devoted to trying to help children born with this very rare condition. We feel so grateful that Garrett was able to be the 2nd child to receive these. I don't even want to think what would have soon happened without them...no one had ever seen another baby with such horrible PLE before. 

The last couple weeks have been SO fun! Garrett's bright, silly personality is back and we LOVE IT! He's such a sweet little guy. He is doing SO well recently with eating orally as well, which is fantastic! His favorites are the veggies - no fruit for this guy. He throws up the fruits, but the veggies he will eat and eat. His favorites lately are carrots and squash! We are feeding him once a day between 12-20 mls (a little less then half a baby food container) and we are hoping soon we can do a swallow study and start increasing how frequent he can eat. A swallow study is what kids who have trachs and other feeding issues have to pass before they can get the go ahead to eat orally and in larger quantities. Garrett will have to go down and eat some baby food with a little barium in it, and we will take X-ray pictures to see how well he's swallowing. We are hoping in the next couple weeks we can do that!

He is starting to work with physical therapy more and is doing great with that too! Poor guy has had to spend all of his life in a hospital, and the majority of it he has had to focus so much on breathing we had to put other things on the back burner. He's been playing and loving his toys again lately! We are very excited we get to focus more on the fun stuff.

With Garrett's tummy doing a lot better, we are hoping in the next day or two to have him back on a normal pediatric formula (we are slowly working up to it) and be able to switch the rest of his meds back to his tummy. Now that we know he is absorbing things much better! Soon after that hopefully we can get rid of the PICC line...then he can wear clothes again! And we are hoping that in the coming couple weeks...we will be heading back to UTAH! Which means, that by Spring time most likely we will hopefully have our Garrett HOME! HOME...it gets me teary eyed writing that. I can't wait to just have him home, and have our days consist of walks, baths, playing, going to Grandparents houses, etc! 

Garrett's doing great with these CPAP trials as well...and we are going slow to make sure he can tolerate it, with the thinking that in the next couple weeks to months he may not even need a vent. I KNOW! I KNOW! Crazy and SO exciting. We are hoping we will be able to transition to trach mask, which is essentially just a small oxygen mask that sits on his trach and humidifies the air and has a little oxygen mixed in if he needs it. We have to do that because unlike you and I, Garrett doesn't have his nose and mouth to humidify his air that goes into his lungs. He has a trach that goes directly into his lungs, so we need to humidify the air for him so its warm and moist. We are hopeful that in the coming months we will get there! We can transition him at home to trach mask and do trials off the vent there. Which is so nice, you don't have to stay in the hospital for that. 

We are just taking everything a day at a time! He has made SO MUCH progress lately, he has surprised us all. We sure love our little miracle guy. He's made our life full of so much craziness and stress but the joy and happiness he brings makes it all SO worth it and more!

We have some exciting news for you all...tomorrow morning NPR is doing a 8-minute segment on their Morning Edition  on Garrett and his surgery here in Michigan! Around 5:40 and 7:40 AM you can listen LIVE on the radio. We are on Eastern time here in Michigan, and from our understanding it should be on at those times in each specific time zone. You can look online and see what stations you can listen to it on depending on where you are at. They have come to interview Jake and I a couple times, and we will be talking on the show. Tomorrow University of Michigan will also be launching a short video they made with Garrett, Jake and I on their website. I will put links up as soon as I get them! We are hoping that by helping get the word out, that we will be able to help other children like Garrett be able to have this amazing surgery. It saved our baby's life. And we want to help pay it forward.