For those of you that havent received the full run down, or if you have and didnt understand, here is the essentials behind Saylor's recent adventure.
As many of you know Saylor has two stomas in her stomach. One is to access her bladder and the other is to access her bowel. When we had Saylor's "new" bladder put in part of her bowel was used and after that procedure she was never the same. While many SB kids do not have bowel or bladder control due to paralysis the bladder surgery compounded this existing problem by creating a contraction problem with her bowel muscles. Basically they no longer would contract and move her waist through her very well. She also did not have much control over them when things did decide to move through. Because Saylor is so high functioning and exists pretty mainstream in the world and with her peers we found it essential to fix this problem. Thus the bowel stoma. We have had it for several years now and it has served its purpose well.
For about the last year we have had a lot of pain and exterior problems with the actual stoma site, not its function. They seemed to escalate just as we had the baby and shortly thereafter it was obvious that something needed to be emergently done. It was almost as if her body was rejecting the "door" to the stoma. Vascular scar tissue was all of the sudden building up, immense bleeding and pain was a nightly routine. Her surgeon removed the "door" late oct just before Halloween. But we all knew she wouldn't last long without a replacement before her system backed her up and cause more serious problems. Luckily he did have a plan that would hopefully fix the problem, create a new stoma, and get us back on a healthy track for her.
We all had scheduling factors to consider and with a new babe I was very nervous about how we were going to do all this. With wrestling started and Nate's demanding schedule with work also options were limited and I knew I couldnt pull this one off on my own with Nox. So it came down to Thanksgiving. Yep we chose that time ... and Saylor gracious surgeons worked around us!
Bowel surgery is a challenging and risky type. It usually includes a clear liquid diet for days prior and a "clean out" perhaps the worst of it all actually. Saylor actually handled the clear liquid diet at home pretty well considering and complained very little. We made fun things like jello jigglers and ate candy jolly ranchers with sprite.
Admission day came though and our little world was turned upside down! I ventured on this one day on my own with Saylor and babe. Full of nerves I arrived to find that we were getting a "luxe" room for how hospital rooms go and the nurses to be very supportive of my predicament. Saylor was very nervous and full of extreme anxiety. Something that would prove to be a companion for days to come. In fact I think one of the hardest things about this surgery was the mental part for Saylor and watching her struggle through it.
The picture above is saylor eating a slushy with the dreaded NG tube down her to clean her out. It was a long day full of sad words and discouraging times but with the loving arms of our Savior, lots of tears, and prayers by us and others we made it through to surgery the next morning.
Surgery day was likely the most relaxed day of the entire week stay. Saylor was not in pain and was very comfortable. Mostly out of it the whole day. She did not require much from us and It was such a relief to have a little bit of a respite break. Surgery was long but went well.
The days to follow brought a lot of pain and more anxiety. Every spectrum of pain was present for Saylor and several for Nate & I too.
Hard times and Holy places really says it all and maybe even an understatement. These are the times though that I realize are my most cherished in so many ways. A time of growth and perspective. A time of sweetness and pain that thins the veil here on earth.
It reminded me how connected my children are and were as she wanted them and they wanted her. The kids were mostly banned from the hospital, minus little babe for obvious reasons. Some tender moments of comfort and cheer.
I went home every night and came back every morning and Nate played the live in the hospital primary care giver for the first time in 8.5 years. Kind of a strange roll reversal but it was actually really nice for both of us to get a taste of the other side. He nurtures her differently then I do ... he does it by putting on purple capes and doing crafts with her and then becoming kind of a hardened coach when it was time to get up and get moving!
Many of you have asked me "did it work" I dont yet have that answer for you. We are not using the new stoma as that whole area needs a lot of time to heal. But soon we will start using it with a small volume and a few months I should know. What I do know is that our lives and mostly Saylors have had less pain since the removal of the old door then we have had in a years time. So it was worth it for that alone. I hope that the new system brings her function and physical peace.
Like all our adventures with Saylor, I expect this was a necessary trial for us all and that good will come of it.
I am so grateful for the immense amount of support we received. For prayers and well wishes. For fasting and temple roll placement. For food and visits. For caring for our other children. For errands, leaf raking, and emails from those we never expected. It is sometimes hard to be the recipient of service, but it too has its blessings and lessons. We pray that you all will be blessed for your kind acts of charity and know that we love and appreciate you.
