Last week I shared the beginning of our trip to Colorado and the results of the initial testing (you can catch up here).
After that post, we had 5 more days of our trip.
On Saturday we went back to the hospital for a parent support meeting. It was really nice to chat with other parents dealing with similar issues.
Going to the bathroom is such a natural, regular thing for all creatures, that we tend to take it for granted…until you have a problem. These people all spend their lives worried about getting poop out of their children – like me – and it was just nice not to feel alone (since most people don’t want to talk poop all day, you tend to keep what’s going on to yourself…lol).
On Sunday we had the day off. We went to the Denver Aquarium with my sister, BIL and niece. Then Maddi and I moved to the hotel across the street from the hospital since we had to be there early each morning.
We continued to do the nightly enemas (really it’s a homemade saline irrigation, but they call it “enema” so I do too) hoping that the x-ray on Monday morning showed it was working.
On Monday (after a scheduling mishap) Maddi had her x-ray and we met with the nurse practitioner. The x-ray showed that the program was NOT working for her. There was still contrast solution in her from the test on Thursday (not good esp since it seemed to have hardened and caused some problems.)
We decided to take the afternoon off from worrying and went to the Denver Zoo with our new friends that were also going through the program. I am so thankful to have had such an awesome mom and son to hang out with. We wouldn’t have had such a good time without them. You can read their story here.
Check out the elephant show video I took.
That night they wanted me to take some more drastic methods to clean her out.
I did, but her belly swelled and became very hard. I got pretty scared and decided to take even more drastic measures. I placed her in the tub and pushed and pushed her knees into her belly until I pissed her off enough to shoot the blockage out. It was NOT pretty, but it worked.
I sure hope no one takes a black light to that hotel room.
On Tuesday we went in for her daily x-ray and appointment. The x-ray showed she was cleaned out and the NP thought she wouldn’t have any more accidents that day – WRONG.
She continued to have accident after accident and her booty got really red and sore all over again. (Remember the goal is to have the poop come out when and where we want – just like everyone else.)
On Wednesday morning we went in for our last x-ray and appointment before heading to the airport to go back to Texas. The x-ray showed she was completely backed up again and my reports of more accidents and sores completely stumped them.
They gave me a few other strategies to try. I asked about making some adjustments to what we were already doing before moving on to the other strategies and they thought that would be fine.
They feel that her colon has no motility and until her muscles really develop more, it will take more drastic measures.
I must admit, I left CO feeling very let down. I let myself believe this would be the magic “pill” that would help us and it didn’t happen.
We left with a few more answers, definitely, but no real plan of what would definitely work.
Maybe
We made it home around 7:30pm and had to go to do Maddi’s “Booty Boot Camp” time right away. It was hard, but I made the few adjustments and we made it through…not getting her in bed until almost 9:30pm!
The next day, she was completely clean the entire day!
So I repeated it again last night and she’s been clean all day today.
So although things seemed so hopeless when we left Denver just two days ago, they turned around as soon as we got home (and once again I turned to my FB mommies group for help and they knew more than the dr’s).
I can’t say that what we’re doing now is the “key” but it seems to be working at the moment and that little bit of hope is what we needed for now.
Keep your fingers crossed!
