Nine Hours Later...

...and Ethan finally came out of surgery. It took almost another hour for them to have him settled in critical care before they let us see him.

Before we were able to see him, the surgeon came to talk to us and let us know that surgery did not go quite as planned. It took a long time to access his airway and his veins and then once surgery started, they found that parts of Ethan's spine had spontaneously fused. So instead of the single osteotomy (cutting into the bone to allow it to collapse upon itself), they had to do six. The spinal rods were removed and the screws for the new rods were secured. Unfortunately, they were having troubles keeping Ethan's blood pressure high enough and they had to stop the surgery before it could be finished.

Ethan has been in the critical care unit since Tuesday on a breathing tube (intubated) and sedated. He is also receiving continuous pain meds. Today they were able to wean him off the low blood pressure medication and restart his tube feeds. He also received a blood transfusion to bring up his red blood cell count.

Tomorrow morning he goes back into surgery to finish what they started on Tuesday. Please send any spare good wishes you have, he could use all the extra positive energy to help him through this. They are anticipating it shouldn't take more the 3 hours.

Fingers crossed it goes smoothly and he can start a full recovery tomorrow!

Requesting Good Wishes...

For later today when Ethan goes into surgery.

After almost 10 months since his last surgery, two significant respiratory illnesses, another admission in May and significant weight loss, he goes into the O.R. tomorrow to have his spinal rods replaced and they anticipate having to do a procedure that will cut away at the bone on his spine to have it collapse on itself and hopefully result in a straighter spine for Ethan.

Any good wishes you have to spare that the surgery goes well, is a success, that he recovers quickly and feels better for all of it would be greatly appreciated! It is always a bit nerve wracking before we go in, I just hope that we can keep on top his pain management throughout as that is the hardest part, seeing him in pain and not being able to do anything to help him!

To prepare for his surgery, he had his hair cut a bit shorter this weekend. We are trialing a different wheelchair and he was able to sit in that without the headrest while he got his hair cut. He is getting to be such a big boy!

Something New

On the weekend Lorelei had her birthday party with friends and family. For the second year, we brought Ethan along to celebrate too! Her party this year was at the movie theatre and we went to watch the new Minions movie.

We brought Ethan in after the previews and sound check and he sat through the whole movie! :) He typically isn't a huge fan of feature length movies and this was his first time at a movie theatre. Clayton sat next to him and was prepared to leave with Ethan if things didn't work out. He did chat a little, giggled some and pretty much just went with the new experience.

Lorelei had wanted to sit next to him, so she sat next to Clayton and she was happy he was able to participate in the movie portion of her party! After the movie, the rest of the kids went to the party room for snacks and cake while Ethan headed home. Overall another check mark on typical experiences we've had with him and that he has seemed to enjoy! YEAH!!!

Although he didn't quite make it fully intact to the theatre (some icing got stuck to the wrap we used), here is the cake I made for her this year. I had some extra hands helping with the actual baking of the cake and looked at different images of cakes other people had made when I iced it.

Lorelei loved it and was very proud of the job I did. :)

Happy Birthday Beautiful!

It is hard to believe that our baby girl is now 10 years old!! She has changed so much over the years, but always keeping her wonderful personality, confidence, kindness and love in the forefront! I hope as we transition through puberty into her teen years that we all survive it without too many fights and come out the other end all the better.

Since she is a summer baby, they always celebrate her birthday in June at school. Her teacher shared with me how wonderful Lorelei was to have in her class and that when she was asked if she could have anything for her birthday, what would it be?! Lorelei's teacher was quite surprised by the answer she received. It turns out Lorelei did not say she would like a Lamborghini like some of her peers did, nor any other item of fame and fortune. She asked for the same thing she asked Santa for...a hospital bed for her brother! How awesome is she?!

To celebrate the most important girl in my life, I've put together a collage through the years...

We love you sweetie and hope all your wishes and dreams come true this year and in years to come.