Monday, November 25, 2013

The BIG surgery

After a week of discussion, planning and testing, it was Monday, surgery day. We knew she was an add on for the afternoon which meant she could be called to OR anytime from 12 to 10 at night. The suspense was hard to deal with. Audrey's Opa came to she the stress and worry with me. Audrey was blissfully ignorant of what was going to happen. She had had teaching on Friday where they made a doll with an ostomy and a bladder catheter in the belly button and we told her where everything was going to come out. She seemed indifferent to the teaching but played with the doll all weekend and was able to tell others all about the ostomy and bag. So Finally at 3 it was time to go!! We went to pre-op and spoke to a dizzying number of people. Going over the conditional plan, allergies and mitochondrial requirements with the OR nurse, the pediatric surgeon, the urologist, the anesthesia team and the pain team. Everyone seemed well read on Audrey and I was as comfortable as I could be handing over my daughter. Surgery was supposed to be 2.5-3 hours.

At hour 2.5, I was called and notified she was stable and surgery was progressing fine. At 3.25 they called say urology was done so the surgeon was closing, finishing the ostomy and then she'd be done. Finally after 4 hours of surgery she was done and going to recovery. Both teams of doctors reported a smooth surgery with no complications. Audrey was very sleepy in recovery but since she was inpatient she didn't need to be fully awake. She was responding to questions and asking for only her princess blanket (she refuses to use hospital blankets) so we knew she was ok. The pain team had placed an epidural so her pain seemed well managed which was a huge relief!! We were back to her room by 10. She had a busy night and her vital signs were a little off but she rested well! Let the healing begin!

Back from OR, there's no more room on this tummy!

Post Op Day 1-
The days after surgery are often the most difficult. Swelling peaks at day 3-5 as does pain and discomfort. With mitochondrial disease, the body has to recover from this huge strain placed on it which has depleted any extra energy it may have had. This was complicated by Audrey's primary team of docs not knowing her well. Of all the days for her to have new doctors this was not a good one. So Audrey slept ALOT! Her body was frantically trying to make enough energy. Her heart rate was high, her blood pressure was low. She had a low grade fever and needed her oxygen. She needed extra fluid. Her pain was mostly controlled unless we had to move her but she was very itchy from the epidural. It was a difficult day for her. Some good things happened though. First her new stroller came! Yay! It had been ordered for her 2 months ago so it was much anticipated, and it was pink! Next, after major surgery, patients have to do the dreaded incentive spirometry. This forces big deep breathes to help open the lungs and get rid of anesthetics. This being a Children's hospital this mean...blowing bubbles!! Same action but much more fun! Audrey willing participated and finally her oxygen started going up and temperature went down. Surgically everything was going well. Her
mitrofanoff was draining well. Her ostomy was pink and happy though still sleeping. We did her first
bag change with the ostomy nurse. By the end of the day, we got our first smile!

Very tired mitochondria!

             The new PINK stroller!


Finally, a smile from my girl!

Post Op Day 2-
Audrey woke up bright and early asking to watch Mickey Mouse! I love my girlie! And surprise, surprise, her ostomy was working!! Yay! Today, everyone is cautiously optimistic that we are finally on the right path. It was decided to start a small amount of pedialyte, give her some blood and we were still trouble shooting the annoying itching. Overall it was a good day. We were able to get her up out of bed into a chair and she was awake most of the day. She tolerated the pedialyte well and an advancing plan was made to get us home. Home!!! After 16 days our discussions finally included home! I was feeling so hopeful!

Happy girl first thing in the morning!

Post Op Day 3-
A day of rest! Audrey finally woke up free of the relentless itching and is still pain free. Since her epidural site looks great the pain team decided to leave it in place and let her have a good day. We had to switch her pedialyte to her jtube from her g because of retching so we did not start formula yet. It was decided her anticipated discharge date will be Monday 11/25, 3 weeks from when she was admitted.

Up in her stroller!

Post Op Day 4-
We are counting the days till we can go home! Audrey woke up again in great spirits and pain and itch free! We were even able to get her to stand on her own to weigh her. The pain team decided to leave her epidural in another day since she's doing so well and the site looks good. Audrey started half strength formula in her jtube! Yay!! Now we have to see what happens with her ileostomy output since it's been high. Urology also came and took out her foley so it's just her mitrofanoff draining urine now.

Post Op Day 5-
It's finally time to remove her epidural. Her dressing is lifting now so it's not safe to leave in. Everyone is nervous but hopeful since it was able to stay in so long she has missed the worst of the post op pain. They started around the clock pain medicine before taking it out so she wouldn't get behind in pain. Her feeds were advanced to full strength!! For the first time in nearly 5 months, Audrey is getting formula!! Her pain ended up being well controlled all day. What a relief! Our biggest problem was getting the ostomy bag to stay on. It's close to the dressing for the mitrofanoff so there isn't a lot of skin to make a good seal. By the 4th bag we both had our break down. She cried that she was scared and so was I. This is one more problem and complication in her life. We are trying so hard to make things better for her, I pray this was the right path.

A big leaky mess!!

Post Op Day 6-
Today we are not changing her feeds. This is what she will go home on and we will plan to advance her very slowly. We are going to start capping her mitrofanoff today and draining every 4 hours. This will be the plan for the next 2 weeks so I hope she does well. Her pain medicine is now PRN and she's tolerating that well. It was a restful day in preparation for a busy week!

She can sit up alone now (to play princesses of course)!!

Post Op Day 7-
Going home today!!

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