Garrett The Brave

Garrett The Brave

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! 

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