I will start this blog entry out by saying that this post-surgery experience (up until right now) has not been as nearly as traumatic as I had played it out in my head. Alexis has been on a pain pump with a continuous flow of medication (plus she can push a button for an extra kick every 12 minutes if need be) so she has been relatively pain free since coming out of surgery. Her bowels are making the tiniest of sounds, her belly is soft and she even had a small amount of output from her stoma-- all good things that mean her bowels are slowly but surely starting to "wake up". The worst thing for her right now is not being able to eat or drink anything. She hasn't been too concerned about food, but she is begging for drinks almost constantly. I am forced to sit next to her with a swab and cup of water and wipe her mouth (sometimes for an hour on end!) to provide some relief. Once her bowels wake up (which could be another few days) they will enforce a light liquid diet, so once we get there I think she will be a million and one times happier.
Now, I will back track to Wednesday night, as I know there are others who are interested in her ENTIRE story from beginning to end. Yes, it was traumatic and I will try to keep as much detail and in emotions included as I can remember. I don't remember exactly what I wrote in my last post, so if I repeat anything, forgive me.
On Tuesday they started the bowel prep around 2 pm. Tube down her nose leading into her belly that pumped about a gallon and a half of some sort of "cleaner". Once it kicked in, Alexis was going to the bathroom almost every 15-20 minutes. Accident after accident we had to force her to wear a pull-up (as she could not help herself, no matter how hard she tried) She absolutely HATED the idea and tried to fight us. I don't blame her, there is no reasoning with a 5 year old. A pull up is a fancy diaper, and she knew it. However, once it was on, she was able to relax a little and took a nap. Neither one of us slept very well that night (but, she did sleep several hours more than I did!), between constant trips to the bathroom , nurses coming in to check on her and my nerves being in overdrive there was absolutely nothing I could do to change that.
Around 930 on Thursday, the OR called for Alexis. Reality immediately set in. I started crying and it took everything in me to stop. We rolled her down and they started hooking her up to O2 sensors, gave her additional iv fluids, medication for her to relax and they talked us through what was about to happen. Everything that happened between explaining and dragging her into the OR room was a complete blur. All I know that once they took her off and sent us to the waiting room, I felt as if my world was crashing down all around me. I heard them wheeling her down the hallway, and I heard her crying for me. It hurt me so bad, but I made it through (not without breaking down once again.. but what Mother would I be if I didn't? Hearing your baby cry for you and not being able to do anything about it is horrible!)
The surgery itself only took about 3 hours once they got started. Originally we planned to do a 2 step procedure where they would remove her colon, create the ileostomy and the jpouch in one procedure and then reverse the ileostomy and connect the j pouch in the second. However, due to her inflammation, blood levels being so out of whack and the Dr not being 100% sure she has Ulcerative Coltis vs Crohns, he decided that the 3 step would be more beneficial. So we will be going back for procedure #2 in a few months as long as the pathologist confirms that it is UC in her colon (as the Dr confirmed there was NO inflamation in her small intestines he could see! -which would indicate Crohns) where they would create the j-pouch and then procedure #3 would be done a few months after that where they would reverse her ileostomy (basically close it up) and attach her pouch to the small intestines. This would give her the ability to hold stool (not much and not for long periods of time tho) but she would look and feel more normal! The j pouch is not a guarantee and could inflame and need the same medication we were lucky enough to get away from, but we are hoping that it is managed well and she can keep it permanently. She would still go to the bathroom 5-10 times a day, but I would hope she would appreciate it more than having her small intestine sticking out of her little belly.
During the waiting period, I can't even describe an emotion I felt.. because I didn't feel anything. I was just lost. I napped and stared at the clock until our families arrived. I was overjoyed when Kyleigh arrived. She was the only thing that made me feel better. I missed her so much!
But, when the Dr came out and told me how well she was doing.. I was completely thrilled! We finally made it to the top of the mountain, now we just had to slowly work our way back down.
I think I will stop there, I will write part 2 later on today or this evening when I have some extra time!