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Tuesday, July 29, 2014

Post Op update...

Surgery is done. One hurdle completed. Mayleigh went back at 8:30 and we didnt see her until 6:30 last night. After talking to her surgeon at 4 and waiting 2.5 hours to see her was the hardest part of the whole day. There was some miscommunication. We shouldn't have had to wait that long to see her in recovery. But they were moving her from her regular room to PICU so I think that is where the miscommunication came in.  I was super anxious as we waited to see her. So nervous about seeing how she looked. Nervous about whether she would cry when she saw us. So many things. When we walked in to the PICU room and I saw her face, I lost it. Just started crying. The poor girl saw us and started silently crying. It was the weirdest thing. Her body looked like she was crying but yet you couldnt hear any noise. It broke my heart! For the first couple hours last night she didnt have much of a voice. I think it was from the breathing tube all that time during surgery.
Let me back up to the report we got from Dr. Levitt. He was very pleased how everything turned out but said she was very complicated. I think after 5 UTI's we knew she was complicated. Now this is my report after listening one time to all this info. So bear with me as I try and get it all correct.
Dr. Levitt said he was able to separate the urethra from the vagina. He smoothed out the urethra. He said he was able to pull the vagina down to where it needed to be and said the blood flow looked good and her uterus looked good. They did go in through the belly and I guess there was some miscommunication about that. He was going to be going through there no matter what to do some corrections on the colostomy. The colostomy was done in China and isnt exactly the way they want it done here. He made it smaller and actually changed the location of the channel to the colostomy. (I think that is right??) They also were able to pull the rectum down to the correct spot. It was quite high but he is pleased with how everything turned out. Poor girl has staples in her vagina and anus. She has stitches on the side of her colostomy on her side and has stitches under her belly button where they went in. OWWW! Poor thing!
This was the part we were not expecting. I guess when Dr. Levitt had to do some work to the urethra she now has to pee elsewhere to keep that clean. He never said this...I think I am guessing at this point! haha! So there is a catheter in her urethra to hold that open and the tube comes from her urethra up to the side of her stomach and just makes a little circle of tubing. It is basically just there to hold the opening open while she is not using it. So he created another hole on the other side of her belly where the tube is draining her pee into a bag here at the hospital. When we go home he said that can just go in her diaper. PHEW! Glad we dont have to do a catheter bag on the outside of her body. So this stuff will stay in place for 4 weeks. We will then come back in 4-5 weeks and Mayleigh will go back under anesthesia to test out the urethra. If she is draining all her pee and not leaving any in the tube they will pull that tube out. If she is only peeing half and leaving half in the tube, we will be taught how to cath her a few times throughout the day to empty her pee. (deep breath) But that will not be forever. He said it sometimes takes a little while for her to learn to empty it all and they will put her on meds to help that. So we have a few things going on that we need to be watching and doing when we come home. Wound care and tubes etc! Kind of a lot but I know once we figure it all out, we will be fine. Just feels overwhelming at first!
When surgeons open the anus there is usually a procedure called dilations that you have to do after for 3 months. Basically sticking a probe in her bottom to slowly stretch the opening everyday. Twice a day. Thanking God today for Dr. Levitt and his amazing surgery skills. He has been doing a new way where he makes the opening a little larger to begin with and WE DONT HAVE TO DILATE HER!!! That is such awesome news!!! Dilations can be so hard on the parent/child bond with adopted kids. They are still building trust and then you have to do that to them everyday...twice. We are sooo thankful to not have to do that!!! That is why we came to the best!!! :)
Right now Mayleigh is doing pretty well, all things considered. She slept pretty well. We all did and that felt good. We were exhausted. She has been having trouble with her hear rate. It has been pretty high since surgery. They have done all the tests to check for issues and have found nothing. They are just assuming it was from the trauma on such a hard, long surgery. She also needed a little bit of oxygen this morning in her nose because that was dropping. That didnt last long. She ripped it out...she hated it in there! She has so many chords and iv's and wires hooked to her that it is difficult to hold her. That is hard. We have been trying though because she rests better laying with one of us. We saw a little of her fiesty side this morning. That is our Mayleigh. She wouldnt have survived half of her crazy hard life if she didnt have that fight in her! ;) We were happy to see it!
She has rested well the last 2 hours. They think for today they will keep her in the PICU because of the heart rate and oxygen issues. Her fever has gone up a bit today too. Luckily we don't have to do blood work to check for infection.
I will try and keep the blog updated as I get time. Daddy is currently having some snuggle time with her. :)



This was soon after we finally got to be with her last night.


Daddy giving her some comfort!


Snuggles with mom



Poor girl would not let go of her daddy. This was after having to put the oxygen in her nose. 


 We kind of chuckled at her pouty lips about the oxygen. She was not happy! 

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