Our Hope

By sharing our story and our experiences with this birth injury we will hopefully educate people. Knowledge is power. Our hope is that you will read this blog, share it with your friends, and they will share with their friends. Then in some small way we have prevented other families from having to go through what we have.

Monday, May 18, 2009

Jadon's visit with Dr. Kozin in Philadelphia.

Written by Matt:
We saw Dr. Kozin this morning. We left Connie & Les' house at 6:30 this morning and by the time we got through the traffic, found the parking deck, changed Jadon, made it through registration, and took the elevator to Dr. Kozin's area, it was 9:58 am. I could have slept two full minutes longer this morning. Darn.

First a Dr. Jeffry Johnson came in and introduced himself as a "Fellow of Dr. Kozin's". JJ as they called him took down all of the information he could get out of us about Jadon. Everything from how the pregnancy went to the delivery and then to the progress we had seen this far. JJ then went to get Dr. Kozin and within about 20 minutes, we had the entire surgery team in the room with us. This was 6 doctors, Dr. Kozin's personal nurse, and the physical therapist. JJ reported the info he had taken from us to the group while Dr. Kozin played with (examined) Jadon. They said they would be more than happy to preform the surgery there, as he gets closer to the 6 month mark. We really liked what we saw of the entire team. I told Dr. Kozin that Dr. Park in St Louis had said we shouldn't expect any movement from Jadon's shoulder, ever. Dr. Kozin said he would not agree with Dr. Park's assessment. He thinks that there is a good chance that there is enough nerve intact to graft onto. Especially since there is no damage to C8 (allowing him to grasp with his fingers and move his wrist). He drew it all out on the paper on the exam table. I tried to take a picture, but it turned out a little blurry. I attached it below. Looks more like ET than Jadon, but it shows the vertebret, C5, C6, C7, C8, & T1 (top to bottom).

He said that he does not believe Jadon's eye is Horner's syndrome. There is not a noticeable difference in pupil size, and in blue or green eyes it should be very easy to tell. Very hard in brown eyes but Jadon's are blue. He didn't have a reason for Jadon's "squinty eye", but did not aggree that it was Horner's. That means that T1 and C8 are OK. The damage was done to C5, C6, & C7 making this an "Extended Erb's Palsy". Typically, Erb's Palsy only affects C5 & C6. He really won't know how much damage until they are in there during the surgery. He wants us to schedule the surgery for the late July or early August timeframe and then cancel if we see any movement of the bicep before then. That will give his nerves the max time to heal on their own before irreversible muscle loss takes place.

After meeting with the team, JJ took us down to exray to do a "flouro". This is some kind of a low radiation moving exray. This was so that we could see the nerves that cause the diaphragm to move. These nerves are very close to the damaged nerve bundles. Jadon's right lung did not seem to move the same amount as his left when he cried for the moving exray. This is something to watch, and could cause need for a followup surgery as he gets older. It is interesting that the Dr. in St Louis ordered a still exray and determined that things were fine in this area. Dr Kozin said that the still xray is worthless for determining the health of these nerves.

Before we left, we met with a physical therapist who went over the exercises with us again. She also made a splint for Jadon's hand so that the fingers and wrist will be held extended instead of curled up. He is to wear it only when he sleeps so that he can have the chance to move those fingers when he wants to. Oh, and the MRI that we have scheduled in Peoria is not needed. Dr. Kozin said his team no longer uses the MRI because they have had too many cases where the info is not correct or really hard to read. They gave up on MRI's and just wait until they go in during surgery. MRI's just did not prove to be worth the risk and trouble. That's it. All we know. Seems like a little more upbeat diagnosis than when we left St Louis.

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