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.

Today: 
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 Michigan...talk 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!