Good Morning

Jadon slept a few hours last night. Kiana said it was a little rough for a while so they upped his dose of morphine and even started to question whether they should switch medications. He was due for another dose at 3:45 am but slept through and missed it. I was able to hold him at 7:45 this morning, after he nursed in Kiana's arms. While I held him, he was smiling at his brother and sister. These were the first smiles we've seen. Then the meds wore off and he was screaming. They gave him an oral pain killer instead of IV morphine because that is what we will be discharged with today. Now, he sleeps.

During the screaming episode, the nerve Dr from the surgery team came by. He said that even though C6 was damaged beyond repair, he was able to patch enough graft in to get plenty of arm function back. I didn't ask the definition of "plenty" because I know it is a "wait and see" situation. The teams goal is to get full hand function, to get the arm above the head, and to be able to bend the elbow to get the hand to the mouth.

Lastly, I would like to point out that today is our anniversary and that I realized it first! I know Kiana has more than a few things on her mind, but I have to take advantage of this... it may not happen again!

Time To Recover

It is now 9 pm and Shelby, Jake, and I are back at the RMH. Kiana and Jadon are sleeping in the PICU tonight. Tomorrow, he should be able to move to a regular room and then will probably be discharged later in the day.

He was groggy from the anethesia when he got out of surgery and sounded really hoarse because of the breathing tube he had had in. They gave him a breathing treatment with a nebulizer and then put a dose of morphine in his IV. That relaxed him a lot. He finally woke up enough to let us know he was hungry and Kiana gave him a bottle. He ate 4.5 ounces and fell asleep again.

He has a cast on both legs to protect the areas that they took nerves from. His bad arm is tapped to his side and his good arm is in a splint and has an IV started. When he does wake up, I don't think he will be very happy.

Almost Done!

Dr. Kozin found us in the cafeteria and told us that they were closing up and just about finished. They took nerves from both legs and used them to "hotwire" around C6 because it was too badly damaged to use. Now we just wait to see what arm function he gets back. They told us that he will lose the progress we have made in the last six months. It is like starting over.

Dr. Kozin did say that we made the right decision about surgery. From what he saw, the damage was severe enough that Jadon's arm would not have made any any further progress. The movement he had is all he would have ever had.

Nerve Grafts

Jadon has been in surgery for over seven hours and Dr. Kozin has not come out to update us. We are questioning if maybe he said he would come out after surgery and we misunderstood. The last phone update said that they are performing the nerve grafts now.

Still waiting

We are still in the waiting room, waiting on the doctor. Dr. Kozin said he would come in after he had explored a little so he could update us. The surgery department just told us that they did have to cut his clavicle to clean up the scar tissue and that the Dr. is still exploring.

Surgery

They took Jadon to surgery at 9:40. He has been in the best mood today, laughing and talking to the nurses. He has even had two separate offers for a date with people's granddaughters, one four months and the other three months old.

We met with Dr. Kozin and he told us that he would start with a botox injection to the shoulder to loosen it up. Then he would clean up the scar tissue that has formed and that may require cutting the clavicle. He would then decide if he needed nerve grafts from the legs or a nerve transfer. After surgery he willl go to the ICU for a while, because he is so young.

We are in the waiting room, waiting for an update. Dr. Kozin said he would come out and update us after he has had a chance to explore a little. I'll post again when I know more.

Arrived in Philadelphia

We made it. I am typing this update from our room at the Ronald McDonald house in Philly. We have to be at the hospital at 7 am (Eastern Time) and Jadon can’t have anything but clear liquids after Midnight. It doesn’t seem fair since he eats every 3 hours all night long. He should be in a great mood by the time we get to see the doctor tomorrow morning!

We left yesterday morning at 8 am and stayed at a hotel in St. Clairsville, Ohio last night. The kids wanted to swim and it was Jadon’s last chance at swimming until he is healed from the surgery. He had more fun in the hotel pool than any of us. He loves to kick his feet in the water and splash with his left hand. We had hoped it would tire him out, but he still woke us all up at 5 am this morning. It was breakfast at the hotel and back on the road by 7 am.

The trip took us across Indiana, Ohio, a small part of West Virginia, and finally Pennsylvania. Mrs. Garmin (the GPS unit) said it was 663 miles and took us 14 hours 22 minutes of driving time, including the extra driving we did around the Gettysburg battlefield. We stopped at the Gettysburg museum and visitors center and spent some time there. Jake was impressed with a lot of the artifacts on display there because they all related back to the history unit he had last year in school.

Hopefully the hospital has wireless internet available. We will be updating this site as we get info, and it will be much easier if I don’t have to type the updates on my phone.