ElddiReMsihT

ElddiReMsihT is in surgery right now - 2nd of 3 step at Cleveland Clinic. She's getting her j-pouch now! Think good thoughts everyone!!

Also, thanks so much to all who participate in this wonderful forum - it has been so helpful to both Rachel and me. We appreciate all the kind support and we're constantly amazed by how strong, determined, and encouraging you all are.

Post Edited (Rachel's Mom) : 4/20/2011 2:51:45 PM (GMT-6)

 

  Good luck today,  You are in my thoughts.  Please let me know how she is doing.

Go, Rachel! As a fellow three stepper, she is like my trail blazer as she is going through things before I do. I hope everything goes as well as possible for her and she recovers quickly and easily.

Glad it's over - hopefully her pain and discomfort they will stay ahead of it for her even if it makes her a bit "loopy" While in the hospital and they can monitor the pain level it never makes any sense to me to be in pain unnecessarily.

Give Rachel a hug from all of us and here's one for you too Mom! {{{HUG}}}

No, not sharing too much at all. My surgery will be open again, so I know I'm in for a big wound. I had those spasms after my first and the valium helped a ton. Hopefully they get her down to H5 quickly as everyone there is amazing. I think I would cry if they put me on a different floor!

Definitely make sure they stay in front of the pain for her. Keep us posted on how she is doing. Tell her I said hi!

Thanks for the good thoughts and the hugs everyone - it's so helpful to know there are other people out there who've gone through or are going through what we are, because unless you've been there you have NO idea. All of you who've dealt with IBD have my utmost respect - this is not for sissies. Rachel is a tiny little girl - 93 pounds before surgery at 5'4". She would get down to 74 during her awful flares, has been on TPN, has gotten sepsis, and has had a dozen blood transfusions, but yet she is the strongest person I know. She's definitely stronger than her mom, that's for sure. I hope these surgeries give her back her life because she's missed out on so much. She was diagnosed in her freshman year of high school at age 14 and missed a lot of school and a lot of fun times. She'll get mad at me for saying this but she somehow managed to be valedictorian of her class. That took determination - she didn't let the disease get in the way of her passion for learning. College was a recipe for flare - she got sick right away and we took her out on medical leave after the first term ended at 7 weeks. We realized then that moving forward with UC was not going to happen. My prayer is that come September she is back at school and moving toward her adult life. And yeah, maybe drinking a beer every now and then!

Thanks again for the support. It's precious to us.

Yeah - H50 is still full much to our dismay. They said they'll have a room for her by tomorrow for sure and possibly tonight. Turns out her surgery was done open instead of laproscopically like the last one. We got our first look and the incision is pretty long - Rachel wasn't quit prepared for that. The surgeon needed to do it that way in order to create the j-pouch exactly how he wanted it. There were no complications, the pouch was tested and there are no twists in it and he was happy with how it looks.
Rachel got up and took a short walk and did really well, better than after her first surgery.

Thanks again for all the good thoughts and encouraging words. They really help us - we don't feel so all alone in all of this because we know you all understand.

My first surgery was open and that incision is a beast. It's worth it in the long run though if it's what was needed to construct the best pouch possible. Hope she gets moved soon! Tell her to hang in there.

Still haven't gotten a bed in H50 - at this point I guess it isn't a big deal. Rachel's getting good care and we have the window side of a room which is nice. Room mate has been in some incredible pain and spends a lot of time crying so that's hard.

Rachel ended up walking 10 laps yesterday, getting her catheter out, and today she is starting on soft foods and will probably get the pain pump removed and vicodin started. Would love to see her get a shower since it's been since Monday. She is having allergic skin reactions so two dermatologists saw her yesterday. Her face is rashy and swollen from the tape that was put over the oxygen tubing during surgery. Other than that, things are good - her stoma is outputting and all looks well. They are talking Monday or Tuesday for discharge if all continues on this course.

Stoma nurses at the Cleveland Clinic are amazing. Three of them have stomas themselves. We saw one this week who was in a horrible car wreck years ago, was in a coma for three months, and woke to find she had a permanent ileostomy. She was so kind and compassionate to Rachel. This woman said that when she got home for the first time after her accident she was in the bathroom really checking out her stoma and crying when a knock came on the door. It was one of her six children saying, "Mommy, I'm hungry!" I guess at that point she realized that life goes on no matter what and she needed to get on with it.

We're looking forward to getting on with it! Hope everyone's doing well out there and that you are enjoying your weekend.

~Lynn

Lynn: I had that same stoma nurse! She was really great to work with. I'm glad Rachel is doing well. I guess at this point it's neither here nor there if she gets moved or not since she'll hopefully be out of there in a couple of days. I hope they get her skin issues under control quickly! She definitely doesn't need anything extra to deal with. Do you guys know yet when her Step 3 will take place?

Sorry today has been rough. Tell her that is really normal to have good and bad days. I didn't know I could have been taken by wheelchair elsewhere. That would have been nice. I am glad she can do this. Does it still look like she might get out tomorrow?

Both of you, hang in there!

Sorry to hear about her fever and not feeling well. I got there on Monday and left Saturday. My parents took me to their hotel and we stayed there that night before making our 5-1/2 hour drive home.

I am doing great. I did sleep a lot today, but I took an allergy pill so that might have been it. As long as I don't get too wild with my diet, I feel good. Nights are harder because that's when I eat my biggest meal. I try not to eat after six. If I do this, I can sleep through the night. Even before the surgeries I usually had to get up to go, so this has been great. I wish your daughter was where I am now, but it will go by fast.