Friday, February 29, 2008

Sorry for the delay!

Emma got out of surgery around 2:00pm yesterday and it went great! Dr. Breech removed a large amount of the septum dividing the vagina and informed us that she has 2 cervixes and 2 hemi-uteri, which is not uncommon with girls born with anorectal malformations. We have nothing to worry about now until she hits puberty and then she'll undergo another round of testing here.
Dr. Levitt then began his part of the surgery. It was sadly a real mess down there. Her anus was about a size 6 hegar and needs to be a 16. This is the link to show you what we use to "dilate" her with. The 2nd rod from the left is a 5/6. She is now the 2nd to last size, a 15/16. It is jaw dropping to imagine she was able to poop at all. That is how bad the scar tissue was. We also found out that the rectum was never completely separated from her vagina, which caused it to migrate north each time. Bottom line is she had 2 surgeries prior that were not done 100% correctly. Dr. Levitt said he almost had to go through her abdomen to access the rectum, something you would do for people born with a cloaca.
I have some mixed feelings towards our home surgeon-the damage that was done almost caused Emma to lose all chances of having bowel control and caused irreversible psychological damage, not to mention PAIN over the course of the past 18 months. People want us to sue for damages; we are planning to put the whole thing behind us and move on. Dr. Levitt will handle Emma's care from here on out. We have no reason to go back to Dr. Kuhn expect for an emergency. Dr. Levitt can manage things from here with periodic updates, xrays and pictures.

Emma is doing FANTASTIC today-she is on a very low dose of morphine and is sleeping now. She was standing up in her crib earlier just talking away and trying to pull out the 6 or so tubes she's got running into right now. Once the narcotics are gone, the 3 leads, the pulse ox, the extra IV line, the blood pressure cuff and the heart rate monitor will be gone. She'll have her PICC line with the TPN going through that until discharge and she'll have her catheter for a few more days.

Well, I better go get ready for bed and sleep while I can. Rounds begin at 6am and I want to be awake for them to ask some questions!

Thursday, February 28, 2008

Still in surgery

They started around 10:30ish and it will probably be another hour or two before Dr.Levitt is finished. There is a lot of scar tissue everywhere so it is taking some time to rebuild her anus as well as dividing the wall that was still shared by her anus and vagina. Emma did great with the cleanout and both of us have FINALLY stopped puking long enough to rest for a bit. Once Emma is out, she will be in the PACU for 1-2 hours before coming back up here. I will post later on this afternoon on how the rest of her sugery went

Wednesday, February 27, 2008

The cleanout is almost done

Again, it's been a long day with the PICC insertion and the NG tube placement. Not fun for Emma and she is almost cleaned out and ready for tomorrow. I will post more later but I have picked up a nasty stomach bug since we got here and I have been puking all afternoon among other things so I am going to wrap this up. Prayers for us, Emma and our surgeons who will be taking our baby away from us tomorrow to get her better!

Tuesday, February 26, 2008

We are in Cincy!

Just a quick update- it has been a looonnnggg day today. Ultrasound of the kidneys/bladder looks good. Contrast enema didn't go too well and they had trouble getting the cath in to do the test but they got it done and we'll know the results of that and the sacrum xray tomorrow when we meet with Dr.Levitt.

Tomorrow is also going to be a very, very long day with the PICC line insertion and admission followed by the 12 hour bowel prep. Ugh but it has to be done to minimize the risk of infection and helps protect her new heiny hole Dr.L is making her. Once we get admitted and things calm down, I will post our room and phone info here.

Sunday, February 24, 2008

Almost Cincy Bound!

In less than 24 hours, we will be in Ohio and on our way to Cincinnati! I can't begin to describe how excited we are to FINALLY have the best surgeons in the WORLD to work on Emma. It'll be a rough week for Emma but 1 rough week compared to the rest of her life......well we can handle the rough week with pain meds and distractions. Once we are in Cincy, I will try and post daily to let everyone know how she is doing.

Well I am off to finish packing Emma's stuff up now that the last load of laundry is finished. Please keep us in your thoughts and prayers as tomorrow is our big travel day!