I know…I know…I keep saying I’ll do an update and I keep putting it off. So I’ll try to put the last two months into one post!
2nd Surgery
Maddi and I went into the hospital on April 29th to prep her for her colostomy closure on April 30. We kind of just hung around the hospital and watched her drink mass amounts of Miralax laden apple juice and nothing happen. They eventually had to put a feeding tube in and force in the special “juice” to make her go….and boy did that make her go.
Her surgery was very quick and she did a great job recovering. By Thursday night she was moving around pretty well…well enough to pull her IV out trying to get closer to the iPad to Skype with her brothers.
Then we had to spend 3 hours, with her in absolute pain and misery, trying to get it back in and it only stayed in for 5 more hours. I refused to let them try again and by the afternoon she perked up enough that I didn’t regret that decision. They finally let her have some juice that afternoon…then eggs the next morning and we busted out of there by 2pm on Sat…just 3 days after surgery.
She recovered well, but developed a BAD diaper rash that lasted 8 weeks post surgery. I tried everything (everyone has an opinion on diaper rash and what works), but her case is different because of her age and special needs.
But still, I bought every powder and lotion and essential oil I could. I even made my own baby wipes to reduce the chemical load. Nothing worked…until she got constipated and didn’t poop the normal every 20 min for a few days.
We’ve been working with the surgeon on bowel management (since her colon is not and never will work the same as someone born with a connected colon), but I kept getting hints that he wasn’t giving me the right info.
I turned to the moms in a Facebook group that I belong to that are all dealing with children with the same needs.
About 2 weeks ago I started to try and follow some of their recommendations and ignore the surgeon. And I finally saw some improvement and had a small glimmer of hope for a “normal” life for all of us.
A Look into Our Life
Our every day life for the past 9 weeks has been pretty bad. Maddi is constantly in pain and there’s nothing I can do to help her. This fact both saddens me and frustrates the hell out of me.
She and I have raged at the situation, and at each other, pretty much daily for the past 2 months. We have been locked to the house because of this. We have tried to go to friend’s houses, but end up leaving within an hour of arriving because Maddi is having some kind of issue.
It’s been hell and until 2 weeks ago…completely hopeless.
I had called the dr’s office repeatedly for help. They just kept telling me to wait the 4-6 weeks post surgery and it would get better. Finally I stopped calling.
I emailed the top dr in the US and he told me we needed to have a test done that my dr had never mentioned. He wouldn’t give me any help until that test had been done.
I called a hospital in Colorado, but since she had just had the repair, they couldn’t help us.
I haven’t done this post because I’ve been in a deep, dark, poop-filled hole that I had no hope of ever getting out of.
What Changed?
As I mentioned, I first started ignoring the surgeon’s recommendations.
We had an appointment yesterday and I requested an x-ray prior to see if she was full of poop….she was, even though I had given her almost 3 times as much laxative for the last few days as he told me to give her.
I also took in 3 pages worth of notes I had gathered from other bowel management programs and moms that had been through those programs to discuss him helping me with it. He wasn’t against it, but he certainly wasn’t on board with it.
There were a few things that I KNEW we should be doing, and in a specific order, and he wasn’t real sure about them. He even questioned the amount of meds I was giving her (not strongly just that he had to look it up) when I KNOW the top dr’s in the US say give them as much as it takes (and for some of these kids…that’s 8 squares of ex lax a day and we’re at 2.5!).
When we left, I felt that I was the more knowledgeable one about her medical needs and that I was the one with 90% of the expertise in this area…and that’s NOT ok with me. I texted Dave before we left and said we needed to talk.
Since I had called the hospital in Colorado last month, I knew they had a bowel management week coming up this month. My sister lives 40 minutes away from the hospital and it’s a 2 hour straight flight as opposed to trying to get to Columbus, OH where the top dr in the US now practices.
I told Dave that I strongly felt that going to that camp was the only way we would get our lives back and we had to do it.
This morning I called and got her registered at the hospital. I called my sister and we contacted the travel agent that helped us get to China. By lunch time, it was set.
I feel like a huge weight has been lifted. I am taking steps forward to control our lives and make them better. I have finally found help and I just hope that we can survive the next 4 weeks until we get there.
Maddi has a few more procedures with the surgeon next week. It appears that her healing from the initial surgery site has taken a small step backwards and he wants to exam it without her fighting him.
I understand that people don’t like to admit when they don’t know the answer…and I’m guessing that’s esp true of surgeons, but I gave him ample opportunities to say he’d find someone to help us. Why couldn’t he see that we are drowning…even when I said “I’m at the end of my rope and I’m going to jump!”? Just show a little humility, and humanity, and help get a two year old out of daily pain.
Check back July 31 – August 6th to see how our trip goes!
Thanks for all your support!
