Hi Everyone,

Well, today we reported to HUP at 6:15 am for surgery. We were both nervous but Clark was very, very nervous as he was prepped. They started at 8:36 am and it is now 12:35 pm. No updates yet but I just HAD to write and relieve some anxiety.

This is BIG! Ten hours. Good news though--no trach! To pass the time, I ate breakfast in the caf, took a long walk around Penn's beautiful campus (jeez, I feel so old around these college kids), ate lunch, surfed the internet. Time is moving at a snail's pace.

I created a Care Page through Pen's website so that I can keep family and friends updated on Clark's progress. Great idea since it should cut down on the phone calls. If anyone is interested in seeing it, send me your email address in a PM and I'll send an invite.

Not only are they rebuilding Clark's jaw (result of ORN), but they are going to loosen up things so that he can open his mouth wider. That is very exciting.

Thanks for listening.

Anita

Hi Anita,
I don't know if it is open on Mondays, but the museum around the corner on Spruce and 33rd or 32nd is an intersting place to kill a few hours. I think it is open until 4. Also has a cafeteria but it is expensive if I remember but I think you can get a glass of wine. Nearest bars/restaurants are over on Chestnut Street north.

Two hour delays getting surgery started at HUP seem to be the norm. I hope you have someone with you to help kill the time. The one thing they didn't give me last time I was in was a wash cloth and soap. They use those wipes and I hate them. You might want to bring some when you come back tomorrow.

Take care,
Eileen

Eileen,

Arrgh, the Museum is closed on Monday! The wash cloth and soap tip is a good one. Thanks. Who was you surgeon down here?

Still waiting for someone to update me Clark's progress.

Anita

Hi Anita,
My last surgery there was 2001 so maybe they now give out washcloths and soap, but I doubt it. My surgeon is Dr. Chalian.

Waiting has got to be a bitch. Are they at least giving you updates from time to time? My surgery was 14 hours and I didn't get to ICU until after 10PM. They also had no time to clean me up in OR so nurses tried the best they could. All I wanted the next day was a shower and to wash my hair. After a total laryngectomy and ND, that is tricky business but I did manage it two days after the surgery. Make certain they have a room ready for him before they move him out of his bed in ICU. I wound up in a hallway for 5 hours because they didn't have a room available.

Can you leave a cell phone number and go find some dinner? The White Dog and the Terrace Tavern on Chestnut are good.

Take care,
Eileen

Clark's surgery went well and he was discharged Saturday a week ago. The swelling on his jaw is decreasing and managing pain is the key to keeping his spirits up. He is using his PEG for most of his nutrition but does nibble a little on soft foods, ie pudding, and milkshakes.

The donor site (right leg) is also very sore. He gets around some with either a walker or a cane. His sutures came out on Wednesday. I think when the swelling goes down, he will feel better about how he looks. Unfortunately, he was quite surprised when he saw his reflection for the first time post surgery.

I think he looks very good. Still the handsome guy I fell in love with 16 years ago. The surgery was only 8.5 hours, far shorter than the predicted 12 hours. Our days are busy with managing pain, dressing changes, feeding, personal care, and follow up appointments.

The PS says that swelling should resolve in under 6 months. I am so grateful that this procedure was available to my husband. It will take time to complete the recovery, but the promise of improved form and function is well worth it. For now, we're taking one day at a time.

Hi Anita,
Glad to hear the surgery was a success and his recovery is coming along. Here's wishing him a speedy recovery and keep us posted.

Take care,
Eileen

Thanks, Eileen!

Anita

Hi Anita. I'm so glad to hear that Clark's surgery went so well. I hope each day he is feeling a little bit better.

Hi Wanda,

Thanks for following along and for your good wishes.

At last weeks appt. with the Oral Max, we asked about this crunchy sensation in Clark's face along one of the suture lines. I noticed it when I was applying some bacitracin. They told us it was an air pocket and would eventually close up on its own.

So today, we noticed some whitish yellowish discharge on the same suture line but lower. When Clark is talking or drinking something, ie moving his jaw, there is more of this stuff so that it is drippy. He is on Bacitracin 800 mg twice a day. He doesn't have a fever but I'm getting a little worried. He still has that crunchy sound in the soft tissue.

I plan on calling the PS tomorrow but wanted to see if anyone has ever had this happen to them. What do you think?