We were so thankful to be home, but it wasn't without quite a few bumps in the first few days. Taylor continued to have severe abdominal pain and vomiting. Tuesday was the worst. We almost took her back to Cinci. She stayed tucked in a ball because the pain was so intense. She only sat up to vomit. The decided to take her off of the ex-lax completely to see if that would resolve this major issue. She was a brand new kid once we had it out of her system for about 24 hours. No pain/no vomit. Could not believe the difference. She has started eating and drinking MUCH better.
She felt so good Wednesday! We even made it down to the Warren County Fair for a while that evening. She had fun but tired out pretty quickly. She rode in the stroller the rest of the evening.
It was so good to see friends and family and EVERYONE was excited to see Taylor. :)
The drawback to taking her off the ex-lax meant we needed to do irrigations 2 -3 times a day to keep her cleaned out. This was quite a challenge since we need someone to hold her while I perform the irrigation. A big thank you to our Pastor's wife Polly and Nanny Austin helping during the day while Daddy was a work.
We headed back to Cinci yesterday for a check-up and talk about the near future. She looks great and is doing great. They were very happy with her progress (especially since we eliminated the ex-lax). We are switching to daily enemas (not the over the counter type). A large volume of saline and glycerin will run in thru a tube over about 10 minutes and then will be held for about 10 minutes. She will then sit on the potty to evacuate all of it (hopefully :). This will only need to be done once a day to keep her colon cleaned out. Something new for Mommy and Daddy to learn...yippee! Keeping her cleaned out and comfortable is the goal, so we will do it.
I wanted to clear up some confusion. We must of not done our part to help everyone understand the outcome of this surgery and what the future holds for Taylor. We knew going into the surgery that this wasn't a simple fix and all will be well forever. The goal of the surgery was to remove the HUGE area of the colon that was collecting all of the stool. Removing this section created a straight shot for the stool to move thru the colon into the rectum. The problem is the remainder is Taylor's colon is still "lazy" - it doesn't have the ability to move the stool thru it. Therefore we knew she would still need to be on a small dose of laxative (with Senna - this is the only product that moves the stool thru the colon. Other products just soften/loosen the stool so it is easier to pass). Unfortunately, Taylor has not been able to tolerate the ex-lax post surgery so enemas are necessary to keep the stool moving thru her.
Daily maintenance will be necessary to protect her colon from becoming dilated like it was before due to chronic constipation. She will need to be very careful all of her life to care for the part of her colon that is left. That means: high fiber diet, no constipating foods, 3 meals a day (no snacks) and daily enemas. Not a pretty picture, but we have to deal with the hand that we were dealt.
So I hope that clears up some questions and confusion.
We head to Cinci on Thursday and Friday with both of the kids. Bryce will be undergoing tests on Thursday to determine if he has the same situation as Taylor. They will both have x-rays on Friday and see the doc. Will keep you posted on what we learn. The tests Bryce needs to endure are uncomfortable and very scary, so please pray for him and Mommy and Daddy and we go thru another trial.
Honestly, we are struggling every day to face these challenges head on, but we continue to lean on God thru it all. We know He is right there with us every step of the way and when we can't walk the path ourselves we know He is carrying us.
"And the God of love and peace will be with you." 2 Corinthians 13:11
More later...
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