United Brachial Plexus Network, Inc.

We drove down Sunday night so we didn't have to fight Philly traffic and most of all so the kids could have a little vacation. We stayed at a hotel with an indoor pool so the kids had a blast.

We got up at 5:30 Monday morning and arrived at Shriner's at about 6:15 or so. We went to the pre-op area where Matthew got to choose a bear made by a homebound older lady (she makes the bears outfits and donates them to Shriner's to give to the kids having surgery). Then started hard part. Melanie and Matthew wore their batman pj's over to the hospital and BatBoy didn't want to part with his jammies - hew wanted to wear his cape!! Eventually we got him changed into the standard issue hospital pj. The nurses wheeled over a tv for Matthew to watch while he waiting. Then he got to drink some "sleepy juice". Once he started to get nice and silly they wheeled him into the other waiting room for the anestesiologist. Then they put an oxygen mask with gas in it for him to fall asleep. After he was asleep they inserted his iv line. The surgery started sometime around 7:30 or so then Dr. Kozin came out to the waiting room about 9:10 and told us that everything gone great. When he put Matthew's humeral head back into place he did not need to transfer a tendon to keep in in place. Once Matthew started clearing the anesthesia and woke up we had one really angry child on our hands. He was given some morphine then he went back to sleep. When he woke up you could see that he was already getting back to himself.

He is wearing a blue cast that has a stabilizer bar in the front and it won't be long until he bops Melanie in the head with it. LOL. There were two other children having the same surgery yesterday. I got to visit with two moms that I chat with on line, so that was really great.

8am Tuesday morning was the last time Matthew had any Tylenol so he is managing the pain really well. We have to go back in a couple of weeks for a follow up MRI to make sure that the humeral head is healing in place. After that we will get a date of when we will have to go back for a week of intensive therapy. Dr. Kozin said that Matthew will probably be casted for about 5 weeks. We're not sure about the splinting time yet.

By the time we left the hospital Matthew was running around. Melanie made her brother a beautiful bead necklace and bracelet while visiting. Then she sat in his bed with him and they both started giggling.

Every person we came in contact with from the Shriner's staff was great.

We got home at 2:30 today and Matthew has not skipped a step. He does have some difficulty getting around in the cast when it comes to bending over or going up and down stairs, but I'm sure he'll adjust in the next couple of days. (I started typing this last night and today Matthew has no problem with stairs so he's adjusted well).

Thank you all for keeping him in your thoughts and prayers.

Cindy

Cindy,

Thanks for the update. I am glad to hear that Matthew is in very little pain and is adjusting. Kids are so resilient.

I love that Melanie made her brother a necklace and bracelet. It is so important for the sibs to feel that they are helping and that they are needed.

Nancy

Cindy, I'm so glad that he is doing good.
Could you please go into a little more detail about the surgery itself? Aaron had the caps recom. for his subluxation and I would like to get a few opinions for this surgery and also I would like to send a tape to Dr. Kozin and see what his thoughts are. Thanks.
Paula

i'm very glad everything is going good. i too would like some more info on the surgery and what made you to decide to go ahead with it. jacob saw dr. kozin after camp and feels he could benefit from the procedure. i'm trying to decide if we should skip this procedure and just do the osteotomy or try the release first. i remember when jacob had his surgeries i had to tell him to stop bouncing on the bed and running down the sidewalk while he had on his casts. i'm sure matthew will do the same. angela

So glad he's doing well! Bopping int he head reminded me of michaela after her Mod Quad. She was the perfect height that when she turned to fast not being careful she would "bop" daddy in the groin. He was so glad when we were through with that splint!!!! LOL
our prayers are still with you. LeeAnne

Nancy,
That's one of the reasons we have always chosen to bring her with us. We face this injury every day as a family, plus we want her to see early on what he goes through and not just come home from the hospital with a cast on. The smile on his face when she sat in his bed and put the bracelet on his "operaion arm" was priceless.

Cindy

It is arthroscopic surgery. Two or three incisions will be made. I haven't seen Matthew's scars yet however I have seen a friend of mine's son and they look great - they're so small compared to the other's Matthew has.

Matthew's arm was still internally rotated and he started to dislocate. The caps procedure was recommended however I did not agree with the procedure for Matthew. In other cases it may be warranted. Here is how we came to our decision. If the caps procedure was being done the back of the shoulder would be sewn up and the humeral head would be pushed back into place. We were told that numerous caps procedures would have to be done because the stitches would losen over time and pressure would cause him to dislocate/subluxate again. With the internal rotation and the front of the capsule being tight we thought this was not the best option. To us the caps procedure was not fixing the root cause of Matthew's problems.

During the anterior capsule release the front of the shoulder is opened to allow the humeral head to pop back into place. Matthew did not require a tendon transfer to hold the humeral head in place. Scar tissue is minimal because as the humeral head grows the cartilage squeezes it out. It is also my understanding that this procedure has not had to be repeated once it was done.

A follow up mri is done a few weeks after surgery to see that the humeral head has healed in the proper place. Then when the cast comes off you go through therapy a couple of times a day for a week with their staff.

Hope this helps - I feel like I'm forgetting something, if I remember I'll post it.

Cindy

I finally remembered the other factor in us choosing this surgery. Since Matthew was under 3 and partially dislocated TCH wouldn't do the surgery until he was 3 or dislocated compleltey which ever came first. The anterior capsule release could be done now and the problem could be addressed before he became completely dislocated.

Cindy

hi, anna she's 3 goes for the same surgery in philadelphia a week from next wednesday, actually her surgery is on monday the 29 we have to be there the 25th for a MRI, the 26 for blood work, brace making & a appt with dr kozin prior to surgery... i'm curious anna is going into a 4T how much bigger does her shirt need to be to go over her cast? i've picked u a few size 6 do you think that'll work? and matthew was in the hospital two nights? we are flying and my husband was making the reservations i told him to plan on coming home thursday instead of wednesday.. and also For anyone that flew to where ever for this surgery how'd did you make out coming home on the plane? i keep saying we'll need that extra seat for anna's arm sticking out so neither one of us gets knocked in the head with her cast.
its great to hear matthew is doing so well i pray she does as well.. look forward to reading everything you can post about this so maybe i'll know somewhat of what to expect.. thankyou
marg

Marg,
I think a size 6 shirt should work (I would try and find shirts with big arm holes if you could) Matthew is a size 3T. I tried some 4T shirts but the arm holes weren't big enough to get the shirt far enough up the cast to get them over his head comfortably. I had some size 4 tshirts from Children's Place and they are working out great. I know that Children's place girl shirts are cut differently so I would suggest trying the boys section.

Matthew was in the hospital one night but we went down the night before. There is a Ronald McDonald house in Camden but reservations cannot be made until the day you arrive. You'll get a packet from Shriners with a list of hotels in the area with discounted rates. But check on www.gophila.com They are offering specials - if you stay a night you get a night free. We saved money making our reservations that way. The Holiday Inn City Ave is very close to the hospital (both off Rte 1) and they have an indoor pool.

We flew to Texas for surgery and Matthew made out fine. When I got into my seat his arm was right there, but he was only 18m at the time so I'm not sure how this cast will work out in a plane, I don't think it will be too bad. Maybe you can request a window seat on the bpi side so the cast can rest by the window.

If you have any other questions please ask away.

Cindy