Medical Update

It has been just about 4 weeks since Mayleigh's surgery. Wow, how time flies. She is doing great. We have had some ups and downs though since leaving the hospital but basically overall our surgeon was right on...this was way easier than the UTI's we were dealing with every month!

I cant say enough good things about Dr. Levitt and Nationwide Children's hospital. BUT they do have a few kinks to work out. Dr. Levitt is new to Nationwide and the nurses and staff are trying to adjust to the crazy number of patients he is bringing to the hospital. And not just any kind of patient, but pretty difficult cases and they arent used to it. They dont know how he works yet and they are still learning. So unfortunately, we had some issues with patient care at home and making sure we had gone home with the right tools we needed to care for Mayleigh. Unfortunately this ended us back in the hospital to have her suprapubic tube changed. It had become clogged because the nurses didnt give me the right syringe to flush her tube daily. I was just using a medicine dropper when I guess that wasn't working correctly. Again, pretty disappointed in the communication breakdown but luckily was able to talk with Dr. Levitt and get things worked out to have the tube changed here in Chicago instead of going 6 hours away for a couple hour procedure. He also took my complaints very seriously about the nurses. He advised me to write out everything that happened and he took that to the appropriate people. I know they are working this out and as frustrating as it is...we wouldn't go anywhere else. Dr. Levitt is just simply the best in the OR and that is what matters!

So other than that bump in the recovery, Mayleigh has done great! For the first few weeks she ate meals standing up. Her bottom was still too sore to sit on so we just adjusted and that worked fine. She wasnt a huge fan of the carseat because of the discomfort. Luckily other than the 6 hour MISERABLE drive home from the hospital, we just went on quick car rides! But she was happy, playing, gingerly walking, and all in all, recovering very well!

This past Friday Mayleigh and I made another quick trip back to Ohio for a post op check up. She had to go back under for this so its not just a quick check unfortunately. Dr. Levitt was going to take the stent out of her urethra (which fell out a few days before we went) and take a look at how her anus was healing. The best news was that we don't have to do ANY dilations!! For those of you who don't know what those are....we really dodged a bullet with this news!! Most children after having this surgery have to be stretched. So the parents have to stick a rod in the anus 2X a day and hold it in there for 10 seconds. This goes on typically for 3-6 months.  Most toddlers obviously  HATE it and its not fun from what I have heard! This was probably the scariest part about surgery for me! Especially because of how much of a fighter M is! So Dr. Levitt started doing a new technique where he made the anus bigger. He said he knew for sure we wouldn't ever have to do as many dilations but wasnt sure until after surgery whether we could skip them all together. We are sooooo thankful we dont have to do any!! Again, thankful to have Mayleigh in the hands of this world class surgeon!

The bummer news we got was that Mayleigh's urethra was a little inflamed. Because of this Dr. Levitt had to put a foley catheter in her urethra until her next surgery. This will give the urethra some more time to heal. He said some kids bodies just take a little longer. This just postpones finding out if M can pee on her own. So for now she is peeing some through the catheter in her urethra and some drains from the suprapubic tube she still has in. Because they had to extend her urethra to a longer length than most kids, the concern will be if she can fully empty her bladder.

So in 6-8 weeks we will be heading back for her next surgery. (will be scheduled tomorrow but we are thinking mid Oct.) During this surgery they will take down the colostomy so she can begin pooping through her bottom. They will also take the catheter out of the urtehra. They will leave the suprapubic tube in for the week that we are in the hospital. At that point they will clamp the tube off and watch her pee. If she is emptying her bladder and there is no urine in the tube, she is good. But more than likely, she will be only peeing some and not able to empty her bladder completely. If this is the case, the nurses will teach Jeff and I how to intermittently cath her. This will happen I think 3X a day to drain her bladder. We are praying we dont have to do this but I am kind of preparing myself mentally that we will.  I am nervous but honestly, not as nervous as I thought I would be when Dr. Levitt broke the news to us. He is hopeful that even if she cant drain her bladder now, that her muscles will get stronger over time and she will eventually urinate normal. But he also has mentioned, there is a chance she never will be able to. That is scary and we will cross that bridge when we get there.

Am I terrified that in 8 weeks we might be putting a cathether in our daughter a few times a day and possibly doing an enema every night for her stool?  Not as scared as I thought I would be. To be completely honest, if you told Jeff and I everything we would have to do to care for Mayleigh, we would not have accepted her file just 13 months ago. There is just no way. But God had a plan and I am thankful for that plan.  Revealing JUST enough to give us the strength to deal with each step one step at a time.

We are so completely blessed to have such an amazing FB support group of moms dealing with these same issues with adopted children.  I have met a few of them in person and will look forward to meeting more. The support we get from them is what keeps me going. I know the next 3 months look scary, but catheters and enemas will become our new norm and will be no big deal someday. Just like changing a colostomy bag, irrigating her stoma, flushing a suprapubic tube, and all dealing with 233 stitches has been.

I have said it before but truly know Mayleigh was meant for our family. She has given our family so much strength and brought us all so much closer through all of this. When I hear my oldest say things like "we are so lucky to have Mayleigh", I know it is life changing for them too. We are still having good days and bad days. As crazy hard as her medical issues have been, I sometimes think the emotional issues are harder. We still continue to work on our bond and some days it is strong and other days we struggle.