Garrett The Brave

Garrett The Brave

Sunday, December 14, 2014

Santa Visits Garrett

We had a very special visit tonight...Santa came to our house! He knew that Garrett couldn't venture out to see him very easily, so he made a special trip to come see him at home! First time sitting on Santa's lap...Merry Christmas! 

Wednesday, October 1, 2014

Garrett turns 2 - Mickey Mouse style

I know it's been WAY too long since I posted last - it's a little crazy at home these days. But, we wouldn't have it any other way! Garrett is doing AMAZING! It has been 6 months now since we brought our boy home... and we have been able to keep him home since then. YAY! 

Currently, Garrett is spending about 6-8 hours a day OFF Of his vent. We just hook a small tube and filter up to his trach, and he can roll around and talk with ease. When he naps, and sleeps at night we still have him on his vent. Just working up slow but steady as he tolerates, and we have been floored by the amazing progress he has made. 

He rolls EVERYWHERE! He loves to laugh, and makes the cutest noises through his trach. He LOVES Mickey Mouse Clubhouse... and would watch it ALL day long if I let him. Ha ha. He has the sweetest, most easy going personality, and is such a joy to finally have in our home.

We were able to celebrate his 2nd Birthday on Sept. 4! His first birthday at home. And what a fun-filled day that was! We had family over for a "Hot-diggity dog" BBQ, and fun Mickey Mouse Clubhouse games and treats. It was a BIG celebration for a very brave and much deserving little guy. (although he's not so little anymore!) 

Here are some fun pictures my brother-in-law took for me of the fun party!

And here is our sweet 2 year old, sitting up tall in his very own Mickey chair. We sure do love you sweet boy!
We would do those months and years in the hospital all over again, to be able to have you in our family. 
You are getting stronger daily, and keep surpassing all expectations. Here's to many more Happy Birthdays!

Monday, June 16, 2014

Garrett In The LDS Church News and Deseret News!

Garrett's story was featured in the LDS Church News this last weekend and featured on the Deseret News website this morning! It is a great glimpse into our lives for the past 2 years. Although it was the hardest experience we have had as a family we would never trade it for anything! Our faith and testimonies have been strengthened and our hope for the future renewed. Garrett is doing so well at home! We are now up to doing two 45 minute trials off of the ventilator every day! Garrett still needs about a half of liter of oxygen when he is off the ventilator but is completely breathing on his own! It's amazing! We are sometimes tempted to go faster but we want to make sure we are weaning him off of his ventilator safely. Garrett doesn't even seem to notice! We sure love you Garrett! Keep up the good work!

Thursday, May 1, 2014

One month today

Our sweet boy has been home 1 month today...AMAZING! He is thriving and doing so great. He is so happy and we are loving hanging out at home with him each and every day! He is getting stronger, and we are so thrilled with his progress. 

I will write a more detailed post soon, but for now I will post some of my favorite pictures from this past month. 

We love you Garrett! And are so proud of you!!!

Silly boy in his bunny glasses 

Out on a walk a couple weeks ago!

My favorite little cuddle buddy boy

Thursday, March 27, 2014

New Instagram Update

And they're off! ✈️Ⓜ️ Garrett is clearly loving all of the attention he's getting! What a sweetheart, BOTH of them. Miss them already! ❤️ Can't believe how the last 2 months have turned was hard saying bye today, we sure do love Mott Children's! Go Garrett! You did it! 🎉 #garrettistheman #garrettgoestomichigan #garrettleavesmichigan

Thursday, March 20, 2014

Garrett goes viral

It has been a whirlwind past couple of days! Garrett has won the hearts of many here in Michigan and in Utah - and now all over the country. NPR did an exclusive story on him, and since Monday we have had a couple other interviews and posts. We are SO proud of him...he's such a sweetheart. 

My favorite (and a tear jerker almost every time I watch it) is the YouTube video U of M posted.

We feel SO blessed that this surgery and the team here in Michigan have given Garrett a new life...

I posted some links below where you can find some of the stories!

Sunday, March 16, 2014

Go Garrett Go!

Garrett has been continually getting stronger each 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 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! 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. 

Wednesday, March 5, 2014

New Instagram Update

Seriously...this boy is a rock star! We turned his peep to 5 this morning and he's been tolerating it perfectly! 🎉 we also did a trial of cpap today, and for 1 hour Garrett was breathing completely on his own! AMAZING. Still while only needing 1 liter of oxygen. We just started at an hour, slowly going to try and work him up - because he's needed a ventilator his entire life, his lung muscles are weak and need some time to get stronger. We are thrilled with his progress! Tomorrow we are going to try a couple trials throughout the day! His smile lights up an entire room!! 😚 I'm head over heels for this little guy. ❤️ #garrettistheman #garrettgoestomichigan #garrettsblog

Tuesday, March 4, 2014

Updates, info and more updates!

Sorry I have been MIA lately, lots has happened - taking care of this little guy is for sure a FULL time job! And I wouldn't trade it for anything, what a sweetheart he is. 

I have LOTS to update here we go! 

We moved to the PICU (from the Cardiac Unit) a couple days after my last post. It was a very smooth and easy move, since it is right next door to the Cardiac one. The rooms are set up the same as well, and a lot of the same nurses work over here - all of that made the transition easier. Our first few days here, the new doctors just wanted to be able to read about Garrett and try to get a handle on him, so we didn't make any major changes. Mostly we were continuing weaning his drips from surgery. We also ordered some new trachs! Dr. Green after looking in Garrett's trachea, felt like he would benefit going up a size - and after having to wait a week we were able to get a 5.5 trach for him! He has been doing really well with it! We were hopeful that it would be a help as we tried weaning his vent a little on settings. 

We have had LOTS of smiles again lately! It's been far 
too long since we had these big happy faces!

A little over a week ago, Garrett had a very bizarre thing happen. I know Garrett + bizarre, I feel like that is something I frequently say! He was laying in his bed and I noticed that he was wet - I figured he had wet his bed, so we changed everything. And then a couple minutes later I noticed that it was wet again! So we sat him up and had our nurse Peter come look at Garrett's shoulder, and we noticed that he was leaking from a pore in his shoulder! It was just a clear, tear looking fluid. I know that sounds SO crazy, but he seriously was constantly dripping from a pore in his shoulder. You almost couldn't tell where it was coming from, unless you wiped it with your hand and waited for it to bead up a little. We got him out of bed to hold, and just held a cloth on our shoulder. My Mom was holding him, and then she told us that she was getting drenched from so much fluid...strange. We had the Fellow and Attending come look and see what they thought. NO ONE had seen anything like that before...great. We wanted to rule out anything that could be potentially really scary, so we had an X-ray ordered, Echo-cardiogram, and ultrasound. After running all of those tests, and testing the fluid that was coming from Garrett's shoulder we still weren't any closer to figuring out what was going on. But we were so relieved that it wasn't anything to be super concerned about.

Overnight, they started weighing the amount of fluid Garrett was losing - and he was putting off somewhere between 1-1.5 liters every 12 hours, from 1 pore. Crazy! We ended up having to replace what we were losing for IV fluids, so we didn't get him dehydrated. Poor guy. At this point we ending up having Cardiology, Dermatology, and ENT all stop by to give their input. None of them had every seen anything before like it, and said the only advice they had was to put a pressure dressing of some type and see if we could get it to stop. We put one on, but with the added pressure it actually made it seep more. Overnight we kept replacing fluids, and were watching him closely. We actually ended up having to put him on some dopamine (to help his blood pressure) because overnight it got a little too low, since he was losing fluid so fast from his shoulder. 

That next morning, we decided it was a good idea to send Garrett down for an MRI of his head, neck, and chest to see if we could get any answers. Since it was starting to effect his blood pressure, we decided that we should try to find out more about what was going on. Now when you have a child with a trach and vent - just a simple procedure like an MRI takes A LOT of thought and planning...the custom trach Garrett has is made with a little bit of metal, so we can not use it in the MRI. Also...we have to add extra tubing to his medicine pumps (since they have metal) and we have to use a different vent since his has metal on it also. After changing out his trach for a different one, and making sure he was ventilating ok with it - they were on their way downstairs. The MRI took about 3 hours, since they were doing scans looking at 3 different places, trying to see where the fluid was possibly coming from. 

We switched rooms (just moved down the hallway) to a little bigger room with a better view, while Garrett was down in his procedure. It was a 3 hour wait...and then he was back up. The MRI scans couldn't tell us where the fluid was coming from, so we were a little disappointed we didn't have any more answers. But, we did get some news we weren't expecting. The brain MRI showed that he had a small sub-dermal hematoma (blood between the membranes above his brain). Most likely the cause is from his blood thinner shots, from the clot he got in his leg after having his PICC line. That news made us a little anxious...but after consulting with Neurology, they felt like the best thing to do was stop the blood thinner shots, and just give it time to go away. We were so relieved that they didn't feel like it was anything that we needed to have surgery for. Luckily, they did an ultrasound of his leg to check on his clot and they couldn't see it!

Two more days went by...and Garrett's shoulder started to leak less, until it finally stopped. I really, really believe that things happen for a reason - and I had the strongest feeling that the reason Garrett started leaking from his shoulder, was so we would check his head...there was no other reason why we would have. I just felt so grateful that we were able to catch that before it got worse, and we had complications because of it. This boy is such a special little guy, he has so many angels watching over him all the time. I love him so much!

Once we had a plan for his head, and the leaking stopped in his arm - we decided to try and make some more steps on optimizing his vent settings. Last Monday (Feb. 24) we made some changes on his vent, and took his PEEP down, from 13 to 10. (PEEP is the amount of pressure your lungs keep in them after you exhale). We also increased a thing called tidal volume (lung volume representing the normal volume of air displaced between normal inhalation and exhalation when extra effort is not applied) from 60 to 90. Essentially we were increasing the size of Garrett's breaths. We spent the day watching him closely and trying to notice any little signs of him not tolerating it. He had an awesome day that day - and everyone was SO happy to see that he did well with the changes. Through out the last week everyday we were able to go down on PEEP from 6! It has been amazing to see the progress that has been made. We went down by 1 every day, and Garrett tolerated it amazing. Our Attending we had this past week, said "I am just playing limbo with Garrett right now - saying How low can you go?" I thought that was perfectly fitting the way he said it! That is exactly what we were doing! 

On Friday we decided we would give the Trilogy home vent a try...and transition Garrett over to it - knowing he may only last a few minutes or hours. We were all SHOCKED when as soon as we switched him over, he didn't even skip a beat! We stayed in his room late into the night, watching him closely for signs that he wasn't tolerating it...but they never came. His X-ray the following morning, and his blood gas looked awesome. AMAZING. The longest time Garrett has ever tolerated the home vent before without having to be bagged, or switched back over to the ICU vent was only a matter of hours. And he did the first 12 as if he didn't even notice anything had changed. It's crazy how much quieter the home vents are! They don't beep nearly as much, and they are SO small and portable. We were thrilled to see him breathing with such ease on a vent we can take HOME. HOME...I can't believe it! And seeing him tolerate it all on a PEEP of only 6, that is a miracle.

When we got to Garrett that next morning (Saturday), we saw a scene we had never seen before...the only vent in Garrett's room was a home vent. Since he had been stable on the  Trilogy for 24 hours, they decided that they could remove the ICU vent from his room. I was thrilled - and also scared to death at the same time! It's been amazing to makes my heart SO happy. This boy is a HERO. He has exceeded ALL expectations!! Giving him time, and being patient over the last couple of weeks, has given Garrett the time to heal and allowed him to get stronger. It was such a good week...and seeing the progress being made is indescribable. I feel like in the past month, especially in the last 10 days - we have got Garrett to such a better place. One that will change his life forever! I just feel so grateful for him...

Yesterday was a BIG day - the morning was full of follow-up scans, on his airways, lungs, head, etc. It all started at 9am - CT scan was first. To look at his airways and see how his lungs were inflating now, since having the splints placed. After that he was taken to get a VQ scan - to look at how well the blood flow was in his lungs since surgery. Then from there he was taken to get a repeat MRI on his brain - to make sure the amount of blood was not getting bigger and that it was starting to dry. Then lastly, he was taken into the OR to get a bronchoscopy to look at his airways with a scope and compare how they look now, a month after his surgery and placement of the splints. Garrett finally got back in his room about 2:30pm, and I was SO happy to have him back in the comfort of his own room. I am always such an anxious mess when he gone having scans, and I don't know second to second what is going on. We were able to get good news later that night on the majority of things going on, here is the instagram update I did that night:

"Today was a GOOD day. He is also LOVING biting on a binky, and has been keeping it in really good! (Teething stinks!) especially when it's on top of everything else he has going on. Garrett had A LOT of scans done today.
His CT lung & airway scan: Dr. Green told us that it looks so much better there's really no comparison to his previous scan. He is breathing so much more at ease, and the scans show that exact same thing.
His Bronch: his airways when scoping them, looked open and great! At some points during the procedure they had him on NO peep whatsoever and Garrett for 5 minutes was breathing on room air. Amazing. We are also hopeful that this procedure will eventually help get him off of his vent entirely. 
Follow-up MRI: showed that the blood had started to dry and no new blood was seen. The exact news we wanted to hear! Over time, the blood will just be reabsorbed into the body. 
Garrett continues to be stable on the Triology home vent! We even today are trying just 1 liter of oxygen, and he's done great! 3 days ago was the first time in months that we didn't have to replace 1 of his electrolytes by IV. So we are hopeful his belly situation will continue to get better. Love this little dude! We still aren't exactly sure how long we will stay here in Michigan - most likely a couple more weeks. But it is SO worth it!  Everyone is shocked with the progress he has made over the past month, and especially in the last week! Sure do love this sweet angel boy."

Today we had a really neat opportunity. We were able to meet with Garrett's amazing team of doctors, and have some pictures taken. NPR is going to be doing a special on Garrett, and have been following us on our journey here in Michigan. Garrett is only the 2nd child to have this procedure done, and so he is in uncharted territory and helping pioneer a new way to treat bronchial malacia. It will be airing sometime this month - I will update and let you all know once we hear when that will be. 

It was a special have all of the amazing doctors who have helped save my baby's life in one room - and to be able to get photos with them. How do you thank amazing doctors for saving your baby's life? They seriously have been angels...we feel so grateful, and are forever indebted. These doctors have spent their entire lives trying to help children like Garrett. It's amazing...all of them are heroes to me.

Dr. Ohye (Cardio thoracic surgeon), Dr. Green (ENT surgeron), and Dr. Hollister (Bio Medical Engineer that developed the software for making the splints on the 3D printer)

These men are AMAZING! We will treasure these pictures forever.

Happy 18th Month Birthday to our sweet Garrett!
We love you and are SO proud of you!

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!