Garrett The Brave

Garrett The Brave

Monday, January 27, 2014

Garrett's the only one

A fun little story... 
When Garrett was little and in the NICU, we noticed that he loved Tigger! Whenever he would watch 'Winnie the Pooh' he would almost always smile and laugh over his vent at Tigger. For the longest time we couldn't figure out why he loved him so much...and then it occurred to us : The most wonderful thing about Tigger is he's the only one - which was exactly the same for Garrett! We have been a lot of places, and have spoken to lots of doctors, and everyone has always mentioned that they have never seen another child like Garrett before. Someone who has survived this long with such complicated airway issues, and a child that needs a PEEP of 20! He really is the only one. He's amazing.

Cute Garrett hanging out with our fav PT Barb 
in his cute Tigger hat his grandparents brought from Disneyland
(this was taken when he was 7 months old)

We are so happy that we made it through the entire weekend with his 1 peripheral IV and that we didn't have to poke him to get labs. Because of his heart condition AND because he has been poked SO much in his life, it is not easy to find good veins on Garrett. So when we have an IV that works longer than 2 days, we are SO happy. Pokes are not fun. And I swear they are still the thing I hate watching the most. This morning, we took him down at 10 am to get a new PICC line placed. We were trying for an arm this time, since he got a clot so fast in his PICC in his leg, we knew we didn't want one there. He was gone for a little over an hour and came back with one in his right arm - yay! Poor guy, I honestly can't even tell you for sure how many PICC's he has had...I want to say 9 or 10, WAY too many.

The nicest thing about having a PICC line is when labs need to be run, or meds need to be given we can do it all while Garrett is sleeping. It's just one poke for the line, that they put him asleep for - and then we can have a much safer way to give him all the things that he needs. A change we made since I last updated was we stopped his feeds for 24 hours. We still have been having issues on and off with him absorbing food very well, and we were also concerned that he may not be absorbing his narcotics as well. So we switched all of the meds we could over to IV and we gave his tummy a nice long rest for over 24 hours. That seemed to help a lot. 

Tonight he seems very comfy, and happy! He's had a little bit of a sleepy day today, but with a major surgery coming up in a couple days - rest is what he needs. Here is a darling video I took of him just a couple hours ago. Love seeing this boy enjoying a good ol' Disney Sing-A-long!

Dr. Green stopped by this afternoon to see how Garrett was doing. Sounds like we are still all set and planning on Friday morning for his surgery. He will be the first case, so most likely start around 7 am. He showed us some really neat photos of Garrett's 3D airway splint. They have been made and are actually in Utah right now at a factory getting sterilized. It takes about 3-4 days and they will be back here by Wednesday. Crazy...I can't believe we are almost there. I know I will never feel ready to send my baby in for such a big surgery...but knowing that this could really help him AND that this is his chance at coming home, in a way I feel ready for it to be here and get him all better. It was so nice seeing him so relaxed makes my heart feel good. I seriously cannot wait for the day that I can wake up and not have to leave my house all day and get to snuggle him at home. I didn't get the whole 'hang out in pjs all day with a newborn' so I will create my own 'my baby is finally home after over a year and we are staying in pjs'! 

Thanks again for all the love and support...we feel so blessed. 

Saturday, January 25, 2014

Getting settled

Today marks one week since we left our home in Utah and made the journey to Michigan! We are starting to get settled into a routine, which is nice. We stayed the first few nights in the hospital in their Ronald McDonald house here - it was SO nice to be close to Garrett and know that we were just down the hallway from him. We have since found a nearby hotel that offers a shuttle to and from the Hospital for free from 7am-10pm. So far we have been just hanging out in Garrett's room and venture downstairs for lunch. His room here is so nice and spacious and quiet. The staff and doctors here in Michigan have been so welcoming and so sweet. This has put me WAY out of my comfort zone. Anyone who knows me - knows that I am the biggest home body on this planet! So picking up our life and relocating for over a month is not something that has been easy to do. But, we really feel so very blessed...everything has felt like it has just fallen into place. 

I wanted to give some updates from this past week - and get all caught up! I will be trying to update every day or 2 with what is going on. 

Monday: Monday morning we were able to meet with Dr. Glen Green. He will be the ENT doctor that will be helping with Garrett's surgery, and he is the doctor who has helped invent these air splints. We were immediately very impressed by him. He talked to us about how he wanted to take Garrett to the OR and look at his airways. So at 9am that morning, we took Garrett downstairs for a bronchoscopy. What they do is sedate Garrett and take a camera and put it down his trachea and look at his collapsed airways. After the procedure was over, we met with Dr. Green. He told us that after looking at his airways, that Garrett was a perfect candidate for his airway splint. This is the news we were hoping for! He really feels very optimistic and hopeful that he can help Garrett get down on ventilator settings, which will hopefully help get him off of his vent all together. This really is such a miracle...Garrett's tissues and how floppy they are, and how they are still being compressed by his pulmonary arteries, if we do not help stent the airway open, anything like a small cold could cause him to not ventilate properly and we could lose him. Because his baseline vent settings are SO high, we really don't have anywhere up on settings we can even go. This procedure is his chance...and hearing that he was a perfect candidate for it, brought us SO much hope.

While we finished talking to Dr. Green, they took Garrett over to get some CT scans. They then use those CT scans to custom make his airway splint using the measurements from his scan and a 3D printer. The splint itself takes a couple days to make, and then goes through a 2-3 day sterilizing process. The CT images they were able to get here are amazing. I will have to get copies sometime and post them. They took a series of pictures as Garrett was breathing in and out. When he breaths in, you can see this tiny spider vein segments of his bronchus airway that is super collapsed, and then when he breaths out the segments are almost so so tiny that they seriously disappear altogether. There are about 1-2 cm on each side where this occurs, so using the splint we can help stent those airways hoping - and hopefully be able to turn Garrett's PEEP down drastically. 

They have these nice beepers that work all over the hospital that they give you when your child is in the OR. They have updates on them, and when he was finished it told us where to go to talk to the Doctor.

After the bronc and going to get his CT scans, we had them come and do an Echocardiogram to look at Garrett's heart. They wanted to get one before surgery, and where he was still sleepy it seemed like a good time to have them come and do that. 

The rest of the day was spent just letting Garrett rest - and of course get in some snuggles!

Tuesday: Tuesday morning at 10am, we had then schedule the Cath lab for Garrett. I was a nervous wreck...this is the first time we have ever had to take him to the Cath lab, so something new just made me really nervous. We were able to just wait in Garrett's room while he was gone. Everything went great and he was back after about 2 hours. We also had them place a new PICC line in his leg while he was down there, because we will be needing one for surgery and after surgery as well. We took him to the Cath lab, because the doctors and surgeons really wanted to see if there was a possibility of other vessels on the left side of his pulmonary arteries. If there are, we could possibly in surgery try to re-route them down to his lungs, and hopefully try to give him better perfusion or blood flow to his lungs. The surgery will help aerate his lungs better, and we are hoping we can possibly re-route some vessels for better perfusion there as well. 

A couple hours later we heard that he does have a couple vessels on the left side, but that we will most likely have to wait until in surgery to see if there is enough to help perfuse the lung better. 

The rest of his day was pretty low key...we had to change his PICC dressing a couple times, just because of swelling and a little oozing. We got him out of bed and he slept a little while in my arms. I love how much this boy loves to cuddle. 

Wednesday: We had a pretty relaxing day on Wednesday. Nothing big scheduled, so Garrett had lots of time to sleep. He had some great OT/PT and even sat up in his big boy tumble form chair. We did FaceTime with our parents in the morning - so they could see him. They are so used to being with him every day I think they were all starting to have withdrawals! I'm so glad he was able to have a day where he was able to be comfy and get some good rest as well. He really needed it! 

Thursday: Thursday morning they ran a bunch of labs. Since Garrett had Adenovirus back in December, we have had issues on and off with his tummy. His nutrition with his labs has not been very good either, and we think that is because of 2 main reasons: 1- he is not absorbing things as well as he used to before he got sick (Adeno virus can take months before your stomach is functioning normal again) 2- he has had to be on a formula called "Elecare" it is just like the name, very elemental and broken down. So the nutrients found in it are not as good as a more hearty formula. It had been a little while since we tried a different formula so we thought now before the surgery would be a good time to try and boost all of his nutrients. We switched to one called 'Compleat', I have heard really good reviews about it. It's a very natural and gentle formula.

Garrett did pretty well the first couple hours, but then we started noticing signs that he wasn't tolerating it very well. First he was have increased amounts of stool out, and then his HR was getting a little higher. Later in the afternoon we ended up stopping it and putting him on some pedialite and IV fluids - to continue on through the night. He was needing some extra narcotics to keep him comfy as well. 

The leg his PICC line was in started to look a little puffy on Thursday afternoon, so the doctor ended up ordering an ultrasound to come and look at his leg and make sure things looked ok. The ultrasound showed that a clot had formed by the PICC line, so we ended up having to pull it a couple hours later. Darn it. I have a love/hate relationship with PICC's. They save Garrett from having to be poked, we can draw labs from it, and give big amounts of fluid, and it lasts longer than an IV. But the downside to them is you are a greater risk for infection and blood clots when you have one. A necessary evil. We ended up having to go back on Lovanox shots that night. We stayed for a while that night to make sure he was nice and comfy before we headed out.

Friday: When we came Friday morning Garrett wasn't the happiest - his HR was up a bit and he seemed uncomfy still. We had tried to start his feeds again, this time back to Elecare, but a little higher calorie one to try and help him get the nutrients he needs. He was having tummy issues and was having a good amount of stool out. We ended up stopping his feeds again and letting his tummy rest for the rest of the night. He spiked a random fever around 7, not exactly sure why. Garrett is hard...even a normal baby that spikes a fever could mean a million things - from teeth to something more serious. Then Garrett complicates things by adding in a trach and vent, blood clot, tummy issues, heart defect, and lots of other things! Figuring out what caused what is sometimes almost impossible to find out. Because of Garrett's heart defect, his tummy has always measured a little large. Even when I was pregnant with him, sometimes his stomach would measure a little ahead of everything else. They believe it has to do with the fact that his liver is a little larger, because of his heart defect AND because of the high vent settings he has always needed.

At around 10 at night he finally fell and asleep and was looking really comfy. I think the doctors and Jake and I really feel like whatever is going on with his tummy, is for sure something to do with whatever Adenovirus did to his tummy. That was a mean stomach bug, and before Garrett got that virus we hadn't ever struggled with tummy stuff. It's been airway and heart. Hoping the next couple days things will help.

Which leads to today...sounds like he had a pretty comfy night last night, slept better than the night before and no more fevers! He seems to be a little more comfy today. We went up a little on his methadone dose, and we are hoping that helps with his comfort level. We have had a hard time getting a very good blood draw on him today - which most likely tells us that he is a little dehydrated from all he's had out. So we are trying to watch his levels close and make sure we are giving him enough. It sounds like either tonight or tomorrow we may have to head back to get him a new PICC line. We were hoping we would be able to go until surgery without one, but it looks like we will most likely need a new one sooner than we hoped. 

So it has been a crazy all over the place week. This Garrett is constantly making people think hard and confusing us all at the same time! We have been VERY impressed with the Doctors, nurses, and RT's here at Mott Children's Hospital. Everyone has been so kind and welcoming. They know that we are so far away from home, and they have gone out of their way to make us feel welcome.

Thank you to you all too...for the prayers, texts, phone calls, emails, money, treats, and SO much more. I seriously don't know how I can repay you all! My parents have a family friend that came and brought a spare car they have for us to use while we are here in about a blessing. Thank you Jorgensen family! There is SO much good in the world. My heart is full.

This next week will mostly be just fine tuning everything - watch Garrett's stomach and hopefully figure out more of if there's something we can do to help. He has seemed much more comfy today, more like himself and that is so good to see. It's crazy to think that this is all happening right now...and that in less than a week the surgery is scheduled. A part of me is nervous and anxious - but there's another part of me that says, lets do it and bring this boy home! I was talking to a nurse the other day, and I realized that it never will be a good time, I will always be anxious about it no matter how long or short of a wait it is. Sending your child into surgery is not something you ever want to do. But, this is Garrett's chance - his chance at getting home, having a normal life, and getting better. We feel so blessed that we have this opportunity. We love this boy so much!

Wednesday, January 22, 2014

Garrett's story

I have had a few people recently who have asked me about Garrett's story. So I thought it would be a good idea to give a quick summary about the journey we have been on the past 16 months...

Garrett was diagnosed in utero when I was 28 weeks pregnant with Tetralogy of Fallot with Absent Pulmonary Valve. A very rare and very serious heart defect. The biggest issue we were told with children diagnosed with this specific defect was that they had VERY large Pulmonary Arteries (caused because of the absence of a Pulmonary Valve) and that they end up pushing against the bronchus airways leading to the lungs. A great way to think of it is the pressure shooting out the end of a hose when you put your finger covering the end. Garrett had these high pressures shooting through his arteries because there was no valve (like the ring at the end of the hose) to make it flow slowly out. We were told that when Garrett was born he would have a 30% chance of surviving. Not what any parent wants to hear...that was one of the hardest days of my life. 

A couple months went by, which were full of fetal echo cardiograms, non-stress tests, blood tests, ultrasounds, and so on. Making sure we could gather as much info as possible before Garrett was born. 

On September 4, 2012 Garrett Jacob Peterson was born at 6 lbs. 7 oz. at 11:18 am. Before we could even get a look at him, he was passed through the NICU window. The next several hours were spent trying to get him to a stable place - where we could walk him over to Primary Children's Hospital. He was not breathing on his own at all once he was born. He was immediately intubated after birth, and was not tolerating any type of vent. It took the team at the U of U, four hours to get him to a place they could transfer him to Primary Children's. Until we sedated him completely, put him prone on his tummy, we found that he could remain stable on a vent called the "VDR". It is a very specialized vent, and one that Primary's has only had for a couple of years. We feel so grateful for Garrett's amazing Doctor, Dr. Don Null who tried everything to get him breathing comfortably. Dr. Null also helped make the VDR vent that ultimately saved Garrett's life. Garrett's pulmonary arteries were SO large, that they were pushing on his bronchus airways, which was causing him to be in complete respiratory distress. With the help of his ventilator, and sedation, and laying on his tummy or sides, we were able to keep him in a pretty stable condition until we felt like he was well enough to go to surgery.

The first time I saw Garrett he had tubes and wires everywhere...we knew before he was born that he could need to be intubated, but seeing it first hand was really hard. 

When Garrett was 3 weeks old, on Sept. 24 he went in for his first open heart surgery. Dr. Kaza at Primary Children's performed his 5 hour long surgery. They repaired the hole in his heart, put in a conduit pulmonary valve, and shrunk his pulmonary arteries by half their size. 

The surgery ended up going as well as we had hoped! He even came out of surgery on a normal conventional vent. He was breathing a lot better and could tolerate breathing on his back and sides. There were a couple rough weeks after his surgery, Garrett got an infection in his chest and we were back on the VDR for a few days. Once the infection was taken care of, he started to do better - and we were even getting some smiles out of him. The following weeks we were able to find settings he was stable on, and we were hoping he would be able to come off of his vent. 

2 months went by...we decided that Garrett was not going to be able to be extubated (or come off of the ventilator). We decided in November that doing a tracheostomy would be the best way to help Garrett. We knew he was going to need the vent for a while, to help keep his airways open. Soon after he got his trach, we ended up having to go up and up on vent settings. We went from a PEEP of 8 to 12, to soon going to 14. PEEP is a word you will hear me talk about a lot! It stands for Positive End Expiratory Pressure, its the constant pressure in your lungs that holds Garrett's airways open.  Because of his large pulmonary arteries, Garrett has 2 cm on each side of his airway that are very floppy and need HIGH pressures to stay open so he can breath. You and I have about a PEEP of 5. Garrett needs the high PEEP, without it even a diaper change is enough to collapse his airways causing him to turn completely blue in color. The scariest thing you could ever see, and the worst part of all is there was no way to stop it from happening. The most frustrating thing of all, is that there is next to nothing out there to help kids with bronchial malacia. It's a very rare condition.

The next couple of months in the NICU were full of ups and downs. Lab draws, CT scans, MRI's, X-rays, and trach cares became part of our daily routine. We ended up placing a G-tube in Garrett's tummy, so we could easily feed him and get rid of the tubes on his face. I loved being able to see my sweet baby's face without anything on it.

We ended up needing to go from his PEEP of 14 to 20 over a couple weeks. Garrett was still having frequent blue spells, sometimes a couple a day where he needed to be bagged with high pressures and help pop his airways back open. It was so hard. I can't even begin to explain the heartache that comes with seeing your baby turn blue, and not be able to help at all. Sometimes I would wish so badly that picking him up or holding him would stop them...but most of the time the only thing that would help was meds. Through it all, he has always been such a pleasant baby. His smile is the sweetest!

In May this past year, we decided that it was time to try Garrett on a home ventilator and see if we could get him out of the hospital. We started doing small trials, 1 hour, and then worked up to 2. The reason you have to go SO slow when babies are being weaned to a home vent, is because they are not as sensitive as the hospital vents. The hospital vents adjust every second and can give Garrett everything he needs immediately. The home vents take a little more time, and most of the time do not give very much support. The more time Garrett spent on the home vent - the more he seemed like he couldn't tolerate it very well. He was starting to have blue spells when he would do trials, and it didn't seem to be supporting him as much as the hospital vents could.It was hard on all of us. 

On July 5, we ended up leaving the NICU and heading to South Davis Community Hospital. They have an LTAC (Long Term Acute Care) unit there and they work with a variety of different vents and settings, and we were very hopeful it would be a place where we could work Garrett up to a home vent. He was still having blue spells, although they were few and far between how often he was having them before. He was soaring with developmental things. Holding toys, eating some baby food, getting rides in a stroller, and even rolling over! He was so happy. 

A couple months went by, and he was starting to tolerating his home vent better, and we were able for the first time in his life, take him outside on the Trilogy home ventilator. My sister's friend, Lauren, took some darling family photos for us the day after Thanksgiving. Garrett was having such a good day - and we were loving holding and snuggling our sweet little guy outside. 

The next day Garrett was not feeling well. He was having stomach issues, and running slight fevers. We started him on pedialite and were just watching him. We thought it was just a slight stomach bug that was going around. Two days later, we got woke up at 6am with a phone call from South Davis. Overnight he had got a lot worse and they were calling Life Flight to come get him and take him to Primary's. Jake and I rushed out the door. Jake flew with Garrett on his first helicopter ride and I met them at Primary Children's. 

It was a horribly scary couple of days...they didn't know what was wrong with Garrett. His kidney function was scary low, he was very dehydrated, and all of his blood levels were all over the place. He was tested for all sorts of bacterias and virus'. After a couple days we finally found out what he had going on, Adenovirus. A very very mean stomach super bug. It essentially destroyed the lining of his stomach. The following weeks were mostly spent replacing levels that labs showed were low, giving IV fluids, and trying to keep him comfy. 

After a couple weeks, we started to see glimpses of our happy baby again! We put Garrett on an anti-viral med (Cidofivor) and that got rid of his adenovirus. While at Primary Children's, we decided to meet with Dr. Day, Garrett's Cardiologist. Over the last couple of months, his lungs and airways have not made any improvement. He is still needing a PEEP of 20, which we have not been able to come down on at all. We tried while at Primary's to attempt a PEEP of 19 and 18 - but those weren't enough to open up Garrett's airways. 

They discussed Garrett at their Cath Conference (where many people from all over the hospital meet to discuss hard cases) and they came to the conclusion that there really wasn't anything they could offer to help Garrett get better. We talked about the possibility of removing his left lung, if that would help him improve since his left lung and airway aren't as good. We did what is called a VQ scan. It shows the blood flow that is perfusing the lung. His scan came back with the results that his left lung was getting 20% perfusion and the right was getting 80%. What we would like to see is 50/50. With those results, we all felt like it is worth trying to save Garrett's left lung...even though it doesn't have very good perfusion right now, there is hope it can get better.

Rewind just a little.....back in May last year, one of our favorite RT's at Primary Children's left an article in our room. It was an article that talked about how a 3 month old baby born with the same type of malacia Garrett has in his airways, was saved using a 3D Printer. It was an outstanding article...and I felt like I was reading about Garrett. I got a very strong feeling that we needed to contact Dr. Glen Green in Michigan and tell them about Garrett. Jake called and Dr. Green was out of the country at the time, so a nurse took down some of our info and said that she would have Dr. Green call us when he got back. A couple hours later we got a call from another nurse who wanted to know more about Garrett, and asked permission to get copies of some of his scans. A couple weeks went by and we talked with Dr. Green over the phone. At the time, Garrett was a lot younger (about 9 months old) and we felt like this was for sure an option we were going to think about. We felt like maybe we just needed to give him some more time and that things could possibly get better on their own. We told Dr. Green and his team in Michigan that we were going to wait it out a little longer...but that we would keep in touch with them in the following months.

After we had the VQ scan done, and another bronchoscopy, and after the doctors told us at Primary Children's that they really didn't have any more to offer us....we decided it was time to give Dr. Green a call again. Within hours of contacting him, he wrote Jake and I an email wondering when we could talk. We talked to him on Sunday morning the 12th of January, and we told him that we wanted to proceed and come to Michigan. By the 16th everything was approved...and we left on the 17th. It seriously was a miracle. And we feel so blessed that everything has worked out so well for our sweet Garrett. 

This is a big step...a step that we are hoping brings our sweet angel boy home.

Sunday, January 19, 2014

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!