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 about...so 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 10...to 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 see...it 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 moment...to 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!