Garrett The Brave

Garrett The Brave

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.


2 comments:

  1. Just came across your blog from a friend sharing the link on Facebook. Thank you for sharing your sweet baby boy with us. Please know that my family will be praying for your little guy to receive the treatment he needs. What a miracle!

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  2. I have been following your Instagram for a couple months...since I found out my baby had a congenital heart defect. They picked up the abnormality during my 20 week ultrasound and originally told us our son also had TOF. After further testing, we found out it wasn't TOF and was instead, transposition of the great arteries. My husband and I welcomed our heart warrior, Leo, in June of this year and like you, my son was intubated the moment he was born and my first time seeing him was with tubes all over him. Reading your story has been very relatable to the things I felt! He went for open heart surgery the day after he was born and has been doing well. It's amazing how well your son has done and I am floored by what you and your husband have gone through (especially since my husband and I have only gone through a fraction of what you have and it's aged us like 30 years). Thank you for sharing your story. -Nicole T (fellow heart warrior mom)

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