It has been awhile...sorry about that. Between Christmas, doctors, school, and general running around, it has been busy. I was able to go visit Lizzie, which was so wonderful. I was in Michigan starting on December 29. This past Tuesday I went with her to the appointment with a surgeon near her home. Dr. Figg worked under Dr. Stocchi at Cleveland, and Dr. Stocchi suggested that she see him. Dr. Figg listened to everything that was going on, and he felt that adding a fourth surgeon into the mix would not be a good idea. He felt strongly that she needed to get back to Cleveland as soon as possible, so that's what we did. We went back to the house, got packed up, and headed to Cleveland's ER. It's a five and a half hour drive, and then it was a three hour wait in the ER's waiting room before they got her in an ER bed (big time communication breakdown as Cleveland knew she was coming). It broke my heart to see her in so much pain, but it would be even harder to not be there with her. Thankfully, the colorectal surgery resident who came down to the ER asked her right away what it was going to take to control her pain. Lizzie told her, and she wrote the orders for exactly what Lizzie said, with the option to go to a higher dose if needed. That was great news because they usually take days to get her pain under control.
It was about 4:30 AM on Wednesday before they had her in her room, and we were able to get a few minutes of sleep here and there. One of Dr. Stocchi's residents came in at 6:00 AM and said the x-ray from the ER looked ok, but they know there's obviously a problem. A very sweet stoma nurse came by a little later to see if she could figure out how to get an appliance to adhere properly, and a dietitian also came by wanting to know how food had been going. Dr. Stocchi was in the OR, so he didn't see her until later in the day...after I had to go to the airport for a flight back to Dallas :(
She is having multiple problems...
- Stoma: fistula on top, a second hole (not another lumen like in a loop ileo) has formed, retraction, an area that leaks underneath the stoma, and possible ulceration at that area; situated close to her midline incision, which is a depressed area, so wafers lift off and she has to change everything every 24 hours
- Bladder: horrible pain and spasms up her midline incision with peeing; hardly peeing at all even when she drinks or when they have her on IV fluids
- Output: several episodes of bloody output, even after Coumadin for her blood clot was stopped; periods of no output and distention, indicating obstruction (even when she hasn't eaten anything that could cause an obstruction)
Dr. Stocchi said today that they will be taking a slow and thorough approach to solving everything that is going on. This could be a very long stay in Cleveland as they search for the root cause of the problems. Tube feedings or TPN may be necessary. Her weight is ok, but she isn't able to eat. He would like to avoid more surgery at all costs, and he said that he can't take her into the OR without knowing exactly what is going on for fear of causing her harm. She has a great surgeon on her side, and I know he will call in all the appropriate experts to get Lizzie well! He will most likely bring in urology soon- the number of surgeries she has had and the abscess after this last surgery can contribute to the bladder spasms, but they will find out for sure after more tests.
Please pray that they can solve everything that is going on soon, and that every problem can be solved completely! Pray for wisdom and guidance for every doctor who is involved, and for peace, comfort, and healing for Lizzie and her family.
I am still trying to get my parents on board with me having surgery for an ileostomy. I have an appointment with my surgeon on the 12th that my parents don't know about. I want to take that time to ask him everything I can think of, and see if he has any advice on how to deal with my parents' fears. If you have any advice, or any questions I should ask my surgeon, please post them! I was talking with the stoma nurse in Cleveland while she changed Lizzie's appliance and she said over and over again, "This is your life and your body. You are in pain, and it is not fair or right for them to delay this any longer than the over three years it has already been." The stoma nurse also had an ileo for over 20 years and she said it was the best decision she had ever made. I must have picked up a bug while traveling home...woke up with a 101 fever, aches, cough, sore throat, etc. this morning. Fun stuff :(
Please keep praying for Lizzie...this has been a long road, but I know she can do it and that her doctors will get this figured out. Pray that it's quickly!
Love to you all,