May 28, 2013

Good news: Garrett finally had his MRI today (we've been waiting a while) and..... his trach was removed! We were so excited to walk in today and see him without the trach. He's been doing so good! We played Uno today in therapy and he seemed to pay attention and he did well. We're so excited to see improvement. I will try to post a picture of him without the trach soon.

May 26

Garrett is continuing to improve! His trach was capped off on Monday. I was told that if he tolerated it well, then it would be removed after 24 hours. But then it was decided he is a good candidate for surgery to fix his ankles (they are still not bending as much as they should) and it is best to be able to use the trach if they need to give him oxygen during the surgery. Upon checking his blood it was determined that his INR levels were not within range. So no surgery until the coming week.

The good news is that Garrett has been capped for a full week tomorrow and is breathing very well! He has worked hard during his therapies and we can tell. Saturday morning when we arrived at the rehab gym he was sitting on the edge of the mat/table having his back and hips stretched and working on sitting up on his own. His therapists told him we were there and asked him to lift his head to look at us and he did! He is gaining a great deal of control of his head.

This is a very long, slow process but we can see just how far he has come and it is very encouraging!
-Christine

May 19

Garrett will be at Primary Children's for at least 40 days. He has handled therapy quite well all week. His eyes are both open wide when he's awake. His trache was downsized and he is wearing his speaking valve all day. They have been working on getting his legs to bend and it seems to be working. They put his ankles in casts which should help his feet bend. We are hoping to see more improvement in the coming week.

May11

Garrett worked with all of his therapists today. And after watching him work I realized how much we have to be thankful for. Especially everyone who has cared for and worked with Garrett. The more I have thought about it, the longer the list grows- and I think it is high time to offer up some thanks! So that's what I'm going to do. (I have decided not to give any names because I am not sure how I would feel if it were my name being posted on a public blog without my permission.)

I am thankful for the leaders and young men who were with Garrett the night of the accident. Thank you for your quick attention and help. I am grateful for the EMTs and Lifelight crew who intubated, evaluated and safely transported Garrett to the hospital. And the trauma team, nurses and staff at IMC took excellent care of Garrett.

Thank you to the nurses, techs and therapists who cared for and worked with him at UVSH. You worked with him and jump started his brain. And you did a great job keeping my skinny kid from developing sores. It was very hard to leave. 

Everyone at Country Life Care Center has been wonderful. Garrett has received the best care and I know it has been instrumental in his recovery. The environment is calm, soothing and healing. It feels like home and I know that has helped Garrett.

I was also thinking about all of the case workers we have worked with. Thank you for doing your best to make sure Garrett has received the best possible care and treatment. Without your efforts we would have been lost.

One of the best blessings to come from this adventure is all of the people who have cared for Garrett and become our friends. You have made a difficult situation easier. Our family will forever be thankful to you! We are also thankful to our family, friends and everyone else who has prayed for Garrett, expressed concern for him and been there or offered to help our family.

Today for speech therapy Garrett was given a choice between two suckers. He took the flavor I expected him to choose. And then he got to taste it. All of the work he has been doing paid off! When we helped him raise it to his mouth he got his tongue into position- just like with the sponge. I was so happy and thankful! Unfortunately, all of the work put in on his feet seems to be gone. I apologize to the physical therapists who have worked on that. After the time spent in bed this last week his ankles are tight and inflexible. I thought we had them doing pretty good.

I am so thankful to everyone that has worked to help Garrett recover. I would strongly recommend all of the facilities Garrett has stayed at. Country Life has become our second home. Our whole family
and those who have visited love it! If anyone reading ever finds themselves in a situation needing a care center, you want to check them out!
-Christine

May 10

I am sorry we have not posted in a week. It has been very busy. When Garrett's lab work came back on Tuesday the care center did not like the results of his CBC.  They ordered another blood draw.  The results came back with a low red blood cell count and Garrett was transported to the ER.  While we were there he had an ultrasound and a CT scan on his leg.  The CT scan showed ossification which I do not fully understand but it is when there are calcium deposits which can turn to bone. Today I learned that physical therapy is the way to treat it.  Garrett also received a transfusion.  Because his red blood was so low, the doctor wanted tests run to determine if he had internal bleeding. But the hospital we were at was not certified to admit pediatric trache patients so we were transferred to Primary Children's. It was a very long night!

Because of his left leg we requested Physical Therapy to come look at it.  I wasn't sure if Physical Therapy was a good thing or bad for that leg.  The therapist showed us some stretches we could try with Garrett on the days he didn't have PT and she asked us if he had ever been evaluated for the inpatient rehab here.  She thought he might benefit from it and said she would ask.  The doctor from physical therapy came to look at Garrett and thought he should be seen by Occupational Therapy and Speech but it was late in the day and they did not make it to evaluate him.  After deciding to transfer him back to the care center and getting that going, we were told that Garrett would not be released yet.

He has been partially evaluated and I think he might be admitted to the inpatient rehab here at Primary Children's.  If he is, it will mean that he will have to do three hours of therapy six days a week.  He will stay here for the weekend and then we will find out some time next week if he can tolerate the therapy and if our insurance will allow it.

They have run many tests for the low blood count and everything has come back normal.  There is nothing to indicate internal bleeding and it may end up being a mystery that will never be solved.  I guess that is all right as long as his blood count stays normal.  I will say that it definitely does not get easier to watch your child be loaded into an ambulance- it is gut wrenching!
-Christine

May 3

Thank you to the members of the show choir who came to sing for Garrett. You sounded great! And we all enjoyed it! The staff here commented on how nice it was to hear you sing. It was very kind of you to come so far. Thanks again!

Garrett is still improving but has had a little set back.  His left leg is aggravated and swollen again. Hopefully, we can find out what is causing it and get it taken care of.  (It has never fully relaxed and the muscles have been contracted ever since the last time it was swollen.)  I really think once this is better, Garrett will really improve!

We are still taking it one day at a time.

-Christine