Monday, January 29, 2018

Another Helicopter Ride

Somehow Noah got influenza A and it soon went into pneumonia. We took him to the emergency room on Thursday.
We soon learned that he had low blood pressure and the infection had gone septic.
He was again prepped for a flight to the Cleveland Clinic.

We made it to the Cleveland Clinic in 25 minutes.

                            He was taken to the PICU.
        He was settled in for the night on 4 liters of oxygen.

His Daddy arrived around 11:30pm. thank goodness he brought his weighted blanket. It really helped a lot.
The next afternoon Noah was stable enough that he was moved to the regular floor.

On Saturday night Noah's blood pressure went up and he was needing oxygen again. We told the doctors that we really felt that Noah's problem was that he was constipated. They really didn't believe us at first but we explained to them that Noah always gets constipated when he is on antibiotics. Sure enough.... they finally listened to us and gave him an enema and boy did he go.......

Sunday evening marked 72 hours in the hospital and Noah had only slept 2 of those hours. We are all so tired. When I was telling Noah goodnight, I told him that if he had a good night sleep he could go home tomorrow. It wasn't long and he was fast asleep. I told the nurses that I didn't want them bother him all night because  he needed sleep badly.  
Finally by 1:30 the next afternoon we were on our way home.

Sunday, January 28, 2018

Not the Way We Wanted to Clelebrate

As I watch you finally sleep on your 20th birthday, I'm overcome with great relief that you were able to battle back once again. I so wish that your birthday could have been so much better. You have been through so much in your life. You deserve the biggest party to celebrate the amazing little guy that you are. Instead we will rejoice that you are alive to celebrate another day.

The nurses were amazing!!!! They made a sign to put on his door to help Noah celebrate.
Tristan and Olivia stopped by with balloons and to wish Noah a Happy Birthday.
Child life gave Noah a bear and a new blanket for his birthday.
                    Happy Birthday Noah!!!!! We love you

Thursday, January 25, 2018

I Feel So Helpless

Noah was just not acting himself and started running a fever of 103.8, I took him to the doctor and soon found out that he tested positive for influenza A. Noah has never had the flu before. I can't imagine having the flu and not being able to throw up. Yes, you read that right. Noah had Nissan when he had his Gtube placed when he was 5years old. He was having issues with reflux causing pneumonia all the time so the surgeon opted to do the Nissan (wrapping the stomach to prevent reflux)
Noah woke up this morning with no fever but slept a lot. The flu hasn't entered his lungs, which is such a great thing. I have worried so much with the flu that has been going around. I pray it continues to stay out of his lungs.

This afternoon he has been trying so hard to get comfortable. I feel so bad for him. I can't imagine not being able to get the yuckies  out of my stomach when I have the flu. I sure hope he feels a lot better soon. He was so looking forward to having his Noah/Kehres Day on Saturday.

Thursday, January 11, 2018

ABR Training January 2018

Our ABR training went really well. 2017 was a great year for transition and transformation. I'm hoping to have a comparison file to post on Noah's progress. Our focus the next 6 months is on his shoulder blades. I'm hoping the work I'm planning on doing will help his shoulder blades to finally have some stability and not slide so much. We are also going to working on his little skinny legs and tiny feet. Now back to rolling and squeezing.
Our trips aren't complete without a few laps in the pool.

Thursday, January 4, 2018

ABR Traing in Chicago

We leave on Sunday to go to Chicago for our ABR training. This little monkey has been getting all over the floor with ease and getting stronger. Looking forward to our evaluation with Gavin on Monday.