On the Road Again.

Well, I am not sure where the last three weeks have gone. It all seems a little fuzzy. It could be the three hours of sleep that I was living on for those first two weeks. Somehow it is already time for us to return to Philadelphia for Jadon's follow-up appointment with Dr. Kozin. I can't wait! We have one stinky baby right now! No matter how hard we try to keep the wrap his arm is in clean and dry he still manages to spit up on it. The casted feet are not smelling to rosy right now either! I will be taking baby wash and baby lotion and a wash cloth to the appointment with to scrub him down after everything is off.

I also can't wait to cuddle him with out all that stuff on. It has been very difficult to get good snuggle time in. I know Jadon can't wait to sleep on his stomach again either. His sleeping has improved in the last few days. He even slept six hours straight one night which was not something that happened much before surgery. Last night though he was up a couple times in the night. He just can't seem to get comfortable sometimes.

We are going to be driving out to Philadelphia again. The other two kids are staying here with my sister so they do not miss anymore school. Shelby is still trying to make up work she missed from the week we were gone for Jadon's surgery. We will be leaving on Wednesday morning. The first night we will stay at my cousin's house in Ohio and then hopefully we will get back in to the Ronald McDonald House for the two nights we need to stay there. Keep your fingers crossed!

Jadon's appointment is on Friday morning (Oct. 2nd). I think Matt wants to go see the US Mint that afternoon. Then on Saturday morning we will hit the road again to return home.

Doing Better Everyday

Jadon is such a trooper!! Everyone who has seen him since we have been home can't believe how wonderful he is doing. I have also heard "Still the same sweet little boy" a few times also. He seemed to struggle with pain on Saturday night into Sunday a little more than he had been. Today (Monday) he seems to be doing better though. He was thrilled to see his David come to play this morning. He just looked at him and his whole face lit up. I have been talking to a few other mothers who have had a child go through this and they have both said that their child was done taking the Tylenol with Codeine by this point. So my goal now is to keep Jadon comfortable on regular tylenol and ibuprofen. Keeping fingers crossed.

I scheduled our follow up appointment for Friday, October 2nd. So now we begin planning yet another trip to Philadelphia. Hopefully that will be the last one for awhile!

Home At Last

Hello All!! It is Kiana this time. We are home. We rolled in around 7 p.m., but not before we let Shelby off at the football game to see her friends. She was dying to see her friends. Cindy was nice enough to make us supper. It was wonderful to come home to a home cooked meal. Our house sitters, Dani and Brian, were also here to greet us. Thanks guys for taking such good care of us!

The trip home today was uneventful. Long but no vehicle malfunctions! Thank goodness!! I am currently unpacking and getting ready to do laundry.

Thanks to all of you who prayed and prayed and prayed for us this week. Some of you we don't even know!! Words can not express how much each and every thought and prayers from loved ones and strangers alike have meant to us. They carried all of us through this very long week. Please continue to keep Jadon in your prayers as he heals from his surgery.

Well. That is all for now!

Detour

We had dinner last night at the RMH with a family from the Champaign, Il area. They have a 4 year old that had the same injury as Jadon. He had nerve grafts when he was 13 months old in St. Louis and then in May of this year had a tendon transfer surgery by Dr. Kozin. This trip was a followup to that surgery. What I found very encouraging is, we would have never known this child had a bad arm. He has limited motion when he tries to bring his left hand towards his waist, but he has a very good range of motion. He did not seem to favor the arm at all. This was the fourth trip to Philly for his family, and they have driven each time.

Jadon was up at 2 am but we fed him and gave him his pain medicine and he went back to sleep. We cleaned up the room, packed the Jeep and headed out about 9:00 am. I won't go into why Jake rolled his window down, but it may have had to do with the eggplant casserole I had for dinner. We were in the worst part of Philly when 3 out of 4 windows on the Jeep went down, and then shortly after, only 2 of those would roll back up. After a couple hours of driving, Jake's window still refused to go up so we used a combination of the Garmin GPS and my phone to find and call a Jeep dealer that was close. That is where we are sitting now, enjoying the complimentary soda and watching "The Price Is Right". Not making any progress towards home though.

Jadon is eating, but he hasn't needed any pain medicine since 2 am. He sure is an attention getter. Two of the McDonalds employees felt sorry for him and brought him happymeal toys. A lady in the McDonalds parking lot had to stop and ask about him. Some people don't want to ask and I think they just assume we threw him down the stairs or something.

Discharged

Tylenol with Codeine every 4 hours. Don't touch the wrap or the casts, and bring him back in a month to remove everything. Don't expect to see much improvement on the arm for at least 6 to 8 months. That was it. We filled the prescription for the Tylenol at Walgreens and headed back to the RMH. We'll start the drive home tomorrow.

Everything has a nerve attached now, but they were long nerve grafts and will take a while to grow together. We had hoped that we could have the pediatrician remove the casts and wraps, or maybe have it done at the Peoria Children's Hospital but Dr. Kozin really wants to see him in Philly in a month. Looks like Kiana and I will try to find a cheap flight. Now that we know his arm is down, and not cast in the "statue of liberty" position, we may be able to handle him on a plane.

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.