Garrett The Brave

Garrett The Brave

Friday, February 7, 2014

Progress in Michigan

This past week has been full of ups and downs. They always say that a couple days after surgery are usually the worst, and that is correct. 

Garrett had a great night right after surgery - he remained on a PEEP of 10 (which is half what he was previously on) and slept comfortably that night. He was pretty sleepy Friday night, and into Saturday some as well - But he was doing fantastic considering he had just had major surgery. On Saturday since his blood gases (labs that show us how well he's ventilating) were looking so good, the team decided to wean his PEEP to 9 and see how he tolerated it. To see him be able to breathe with only a PEEP of 9 was something I never thought I would see. 

The next day (Sunday) was a little rocky. We were doing some cares that afternoon, and Garrett was starting to become more awake and alert. Just a little insight to know - in the past when Garrett has not tolerated his vent changes, sometimes we won't know right away. Sometimes it takes a little while for things to settle, and then the true test of how well he's tolerating everything will be how well he does when he gets really mad. Because of his complicated airway issues - when Garrett gets mad is when we need the vent to be able to support him. So...we were cleaning some of his incision sites to make sure we keep bacteria away, and he did not like it. He started changing colors and we ended up bagging him with a little more pressure than the vent was giving him and he recovered very fast. Later in the middle of the night, he had another slight problem, but recovered fast as well.

The next day (Monday) we ended up going way back on his PEEP to 18. That day was a whirlwind...changing trachs to make sure he didn't have a plug, extra treatments through the vent, changing of vent modes, bedside Bronc to see if there was something going on from the surgery, and so on. We ended up also adding another chest tube, they did an X-ray and ultrasound and found that Garrett had a pretty decent size pocket of fluid on his left side, near his lung. The fluid had increased in size overnight, and they wanted to make sure that that wasn't causing the ventilation issues we were having. We also did an echocardiogram to see how his heart was looking since his surgery, and the function of his heart looked great! That was a huge relief. 

The bedside Bronc that they did, showed that there was quite a bit of swelling from the airway surgery. They had already added some steroids to help - but they ended up starting some more, to try and help with the inflammation. 

The Cardiac unit here is amazing - they have been so great to work with, and they even asked their fellow PICU Attending that was on to come over and see what he thought about everything that was going on with Garrett. He gave some great recommendations and things that we could try, and said he would stop by once a day to see how Garrett was doing. In the PICU here, they see A LOT of complicated airway/lung patients, so it was so nice to see how well each unit works together - which ultimately helps benefit Garrett. The rest of the day we just tried to let Garrett rest. After a major surgery sometimes rest is the best medicine of all. We decided to keep him on a PEEP of 18 throughout the night, and re-evaluate in the morning.

On Tuesday morning, when we got to Garrett's room - he was down to a PEEP of 14! They said that he was doing much better, and that his blood gases had improved as well, so they felt comfortable going down to 14. He had a pretty good day that day - he was nice and comfy majority of the day, and even got some good naps in. 

Wednesday was another crazy day...Garrett has a pretty good leak (its air that leaks around his trach) so we ended up talking to ENT and see if they wanted to upsize his trach size. We had ENT come in and place a slightly larger one, but it did not work very well because it wasn't a custom trach like Garrett's current one. Garrett was still leaking the same, or worse, and he was not as comfy. Jake and I ended up switching back to his normal trach and he ended up doing much better. We ordered some custom trachs, that will fit better and they should be here by Monday or so. We are hoping the bigger custom trach will help him ventilate even better!

(Cute bear from Jake's Aunt's and Uncle's - Thank you!) 

Which takes me to Today! Today and yesterday were 2 of the best days we have had since surgery. We are down to a PEEP of 13, YAY! Garrett has been calm, relaxed, and very comfy. We are even weaning some of his med drips he's on, and he's been tolerating it very well. They go so slow here and are very cautious of making sure Garrett is comfy while we go slow. Yesterday, we were able to pull his large chest tube that was in still from his surgery, and he was SO happy to see that go. He seemed much more relaxed once that was out. And then today they were able to pull his other small chest tube that they placed on Monday - yay! There has been some talk that we may be being transferred over to the PICU come early next week. He's been doing so well from a Cardiac standpoint, that they feel like they can sign off on him if this weekend goes well. Then it will just be dealing with his lung issues, weaning vent settings, and figuring out where we go from here. All of the units here are amazing and we have already met quite a few of the PICU doctors, and they seem awesome as well.

It was so great to have all of our parents be with us this past week. My parents, and Jake's parents, flew in last week on Wednesday night and we had them here until this past Wednesday. It meant so much to us to have their support while we are going through such a scary situation so far away from home. My Mom is still here with me (thank goodness!) and so I get her longer! 

It really is amazing to see how much better he is already ventilating, only being a week out of surgery. Just to give you an idea, here are some X-ray pictures of Garrett's. 

This is an X-ray of Garrett's lungs just day before surgery. You can see how over expanded his left lung really is, it almost completely goes down lower than his ribs.

This film is from yesterday! You can see nice curve on the bottom of his lungs, showing that they are being ventilated properly. The hyper expansion is gone, and it's not as dark as it was before.

It really is amazing to me that Garrett was ventilating at all prior to surgery. It is such a blessing we were able to get him stable enough to be able to participate in such an amazing procedure.

Today was especially great because it was the first time Jake and I were able to hold him since he had his surgery last week! We had him out of bed a good portion of the day today and he loved it. I can't even begin to tell you how amazing it is to be able to hold Garrett, and see him breath so easily. And to be able to tolerate it on almost HALF the vent support he was on a week ago. That to me is a miracle. He looks so comfy when you see him breathe, it's not forced or anything, its just nice and smooth. I can't even imagine how amazingly different he feels, to be able to breathe so much easier. And we are only a week out from surgery, I can't wait to see the progress he will make over the next weeks and months. He is my hero! I love this little boy so much! Sometimes I can't believe that we are actually in Michigan right now, living in a hospital, and doing all of this - but it just all has felt so right. With how well everything worked out - we KNOW that this procedure is exactly what Garrett needed. We feel so blessed that Garrett was born at this time, when procedures like this are available...I know there have been many before him that could have benefited from having it, and we hope he will be able to help future children like him, be able to have a great quality of life! 

I could stare at this boy forever...he makes me so happy. The staff here is falling in love with him - I had a nurse the other day say, "I just fell in love with Garrett! He was fussy while I was helping his nurse, and I just rubbed his head and held his hand and he fell right to sleep." He really is such an angel. Just knowing that this procedure is going to help my baby finally get to come home with us...there aren't even words. I can't wait until I am just stuck at my house in my pjs and get to cuddle my Garrett all day long! I feel like it is within reach...more so than it ever has been! 

Saturday, February 1, 2014

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 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 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 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 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 are a fighter...Our Garrett the Brave!