The new Garrett

Here we are...the day after surgery. Garrett is doing amazingly well considering all he went through yesterday. The total time he spent in the OR was 10 hours. He is amazing...I want to summarize our day of Miracles yesterday. 

Our day started at 6:30 am, we arrived to the hospital to be with Garrett before surgery some, and to meet one last time with the doctors. The nurses were so sweet and let us get him out to hold him and cuddle him before he went to the OR. The night before surgery Jake gave Garrett the sweetest blessing...it was a very neat experience. We both received very sweet blessings that night from our Dads as well. At the end of the night, Jake and I were both feeling so peaceful about everything. With how fast and perfectly things had worked out to get us to Michigan and how perfectly the process with the splints had gone, we KNEW that this was exactly what we were supposed to be doing for Garrett. This procedure is a non FDA approved procedure, hasn't gone into clinical trials yet, and Garrett is only the 2nd person to ever receive it...and everything worked out with insurance, travel, FDA, and so much more within a matter of less than 2 weeks. That in itself was a Miracle. We are so thankful that all the pieces came together. We are so grateful to Cherry Creek Mortgage (Jake's employer) for helping us through the insurance process and providing a great policy. We are also forever indebted to the team here at the University of Michigan, who have done amazing things for Garrett. We have seen doors just open, and the process has been so smooth. It really has been amazing to see everything unfold the way it has. The time, thought, and the team we have behind this procedure is hands down the BEST team in the country.The doctors we have had working on all of this have been some of the best in the world. They are world renowned for their expertise in ENT and Cardio Thoracic surgery. So we feel so very blessed.

At about 7:20 am the OR staff arrived to get report and to take him downstairs. We met with the anesthesiologist and she was very sweet. They transferred him to another bed, and then made their way downstairs. I don't know how to describe the feeling it feels like sending your child to the OR...it is so hard. It just breaks my heart, and I wish so badly that I could take his place. Or wave my magic wand and make everything better. 

They have a nice waiting room right outside the Cardiac ICU that we stayed in during Garrett's procedure. Our parents flew in from Utah to be with us, which has been so nice. We got settled in the waiting room around 7:45 am and camped out there all day long. The hospital staff was so amazing to update us very frequently on how Garrett was doing, and where they were at in the procedure. That was a life saver! I would hold onto every update. Every single time we got one yesterday...it was positive. And every time they updated us, things were always better than what they thought things were going to be. It was a huge blessing and Miracle.

When Garrett got to the OR, it took about 2 hours to prep him, get lines in him, and be all prepared for the surgery. They also did a repeat Bronc, to look at his airway once more and make sure things hadn't changed in the last 2 weeks. Things looked exactly the same, which we all assumed. They wanted to make sure things looked clean, clear, and free of any infection before they started as well. The splint procedure is what they did first. They got him on the bypass machine around 10:00 am, and started the procedure shortly after that. Once they got him stable on bypass they came up and told us that everything was starting. He easily went on bypass with no issues at all. Going into the surgery, the surgeons and doctors were very concerned about his left pulmonary artery, and thought that they may need to add a shunt to give his left lung better blood supply, which was going to be another major procedure in itself. Once they opened up Garrett's chest, it relieved that high pressure, and all of the sudden they could see better flow to that left lung. It pinked up more. Miracle. They ended up being able to see that indeed the left pulmonary artery did have good blood flow, but because of the high pressures in Garrett's lung from the PEEP of 20 AND not being able to ventilate through those tiny little slits of his airways, it was restricting blood flow to his lungs. They were VERY excited about this, and the fact that they weren't going to have to do anything extra to get blood flow to his left lung. 

They splint placement took about 2 hours. Since Garrett has had a previous cardiac surgery, it takes a little longer because they have to deal with lots of scar tissue. His left airway, as we have always known is much more severe than the right, so they chose to do that left one first. They placed the splint on his left airway, and after they sutured it in they did a bronc to see how well it was staying open from the inside, and it was completely open...amazing. They sent someone up right after they did the left airway and it was staying open to tell us that the splints were working. We were floored. And amazed! They then did the right, and came up afterwards to tell us that the exact same thing happened with the right. We couldn't believe it! 

We waited about another hour, and then Dr. Green (Garrett's ENT surgeon) came up with 2 of his colleagues to talk to us about the procedure. They were thrilled with the outcome. They said that Garrett was doing great - and that he tolerated everything very well. He told us that he really feels like with how well Garrett's airways opened up - that he feels like Garrett will not need a ventilator. He then told us that if Garrett continues to do this well, he may be flying back to Utah on a plane with us....talk about complete shock. I couldn't believe the words that were coming out of his mouth. I didn't even know what to say. Dr. Green has spent his entire career trying to find a way to help children born with bronchial malacia. We feel so blessed and so grateful with how things have worked out. How in the world do you even begin to thank someone who just saved your child's life and someone who helped possibly be able to get Garrett completely off of his ventilator? I really don't think there are words that can even convey the feelings we all felt in that room after he told us how well everything went. We all just sat there in awe. It was a miracle, one that we have prayed for Garrett's entire life. The feeling in the room was one that I will never forget...I can't even imagine how much better Garrett is going to feel being able to breath so easily. We feel so grateful we were given the opportunity to have this procedure. It is so new out, and to have Garrett be the 2nd to be able to have this surgery, makes me feel so blessed. We hope that with the success Garrett has had so far - that it helps their clinical trials start, and it can move on to save lots of other babies. The only other option out there for children like this is life on a ventilator, which is not what any parent wants for their child. Right now we are full of hope, and have lots of faith.

(Dr. Green on the far right)

Once they finished up the splint surgery, they had Dr. Ohye start on his heart. We have had a couple Echocardiograms lately, and they showed signs that Garrett's Pulmonary Valve he had placed as a baby, was starting to be very leaky and not function as well. The heart surgeon ended up replacing his pulmonary valve, especially since we were opening him up anyway it was a great time to address his heart issues as well. He also shrunk his pulmonary arteries a little bit more (they are still bigger than normal) and his part of the procedure took about 2 hours to complete (it was about 4pm by now). He came up to talk to us afterwards and said that his part of the procedure went as well as it could have gone as well. Miracles all around. Garrett was able to come off bypass perfectly as well. Dr. Ohye described everything he did, which was amazing...he is a very skilled surgeon.

(Dr. Ohye on the left, with Dr. Green)

They told us that it would take at least another hour before Garrett was up from the OR, and then another hour to get Garrett settled in his room and get his meds and pumps all switched over. Knowing that he was doing well and that things had gone so perfectly...I felt relieved. Of course, I couldn't wait to see my sweet baby and give him kisses. As soon as he was settled, a nurse came out to get all of us! We then went back to Garrett's new room and saw him...he looked so good. So calm, and comfy. 

It was hard to believe all that he had gone through in the day - he looked that good. What a tough, tough baby boy he is. We feel so blessed to have him as ours. We were also shocked to see that he was completely off all of his heart medications already, even an hour after leaving the OR. The most amazing thing to see was his vent...he was on a PEEP of only 10. TEN. That in itself is a miracle. They told us that because of the airway surgery, Garrett's airways would be swollen and inflamed the next little while - and in the coming days to weeks, we will be able to wean his settings even more. This is seriously unfathomable. Garrett has been on a PEEP of 12 to 14 then to 20, since he was 4 months old. So to see him breath on such low settings, was amazing to see. I felt like we were looking at a completely different baby! And we were! It was still the same Garrett, but his insides were completely different for the better - new and improved! What an amazing experience. Doctors and nurses were coming by and peeking in...they couldn't believe that he was on such a low PEEP, half of what he was on less than 12 hours ago. 

We stayed with him for a couple hours, and then left for the night once he was nice and comfy. The plan throughout the night was to just keep him comfy and keep his pain under control. Garrett is very used to pain meds, because of all that he has been through in his life, and they have been so great to here to keep his pain under control. 

We called early this morning to see how his night was...and it was great! Very uneventful (which we love) and he was comfy. We have a very sweet nurse Amanda today, that had him a couple times last week, and that made me feel very happy. So far today we have a great day...mostly we are just watching his cues and giving his extra meds as needed. We are going to wait most likely another day or two before making more changes on his vent, but that will be in the plan for this next week too. Watch his blood gases (which will tell us how well he is ventilating) and watch his X-rays as well. 

I can't even begin to write into words how amazing the past 48 hours has been. It has been full of miracles and blessings. We really feel like we have been guided to be here in Michigan at this time - the way things worked out so fast, and the doors just flew open to get us here, we KNOW without a doubt that this was the plan all the way along for Garrett. This is life changing...for Garrett and us. And soon we hope it will be available for lots of other children out there. We hope and pray that the coming days and weeks will continue to be positive. I don't know how to say thank you enough...for all the love and support we have had so far. Garrett has touched SO many lives, and I know that your prayers are the reason why things have been going so well also. Miracles do happen. I completely believe in them. Garrett is a miracle in himself. There are no logical reasons as to why Garrett is still here. He has done some amazing things already in his short 16 months...and I can't wait to see what the future brings for him - and our Family! 

We love you buddy...you are a fighter...Our Garrett the Brave!