At this point there are no beds at Texas Children's in Houston. I think this is a blessing in disguise. I don't want to mislead anybody, it is not a bad place to be. But I just need to be close to home for a little while. (Sorry for the whinning)
It was so nice to be home yesterday. After noticing that Annabel was not eating very good yesterday, I just chalked it up to being released and traveling home. Mel and I were able to go out for a quick dinner. It is hard to catch up on six kids, my life, his life, work, etc. in about 75 minutes. When we arrived home Tara told me that Annabel had lots of mucous and didn't want to eat much at all. As I was getting her ready for bed she just seemed to want to lay her head on my should. Again, just thinking she was tired from the release. After doing all the bedtime routines, I placed her on BiPap. I went to begin washing clothes and unpacking, try to catch up with the twins and their school schedule. Mel said Annabel was screaming. I immediately thought how she is probably spoiled from her and I sharing a bed for week. When I went in to her room, I was shocked. Her heart rate was over 200 and I had never seen her so stressed. I unhooked her from everything and thought I would rock her until she was comforted and maybe asleep. No dice, she was in some kind of pain. Her heart rate continued to stay high and I could barely touch her stomach. It seemed to subside briefly with some gas being released and then a BM. She comforted for about 20 minutes. I rocked and her numbers decreased. Then it hit again, high number and much pain, so much screaming. I looked and she was purple around her mouth. Mel said, "Cathy, I don't think you need to mess around! Maybe this is what the dr. meant upon release and you need to take her back." I was sick to my stomach at the thought of packing up dirty clothes, basically just packing anything. Her heart rate continued to rise and she was still in pain. Mel call 911 and they were there in minutes, kneeling beside my rocking chair. Also, I had called Tara for moral support and she had arrived. Since Annabel was hooked to pulse ox machine they just put her on stretcher and we were off. Her heart rate rose and she began vomiting as we arrive at the hospital. They began xray that showed an obstruction and then followed up with CT scan. They were not able to obtain an IV. We were told that she had to be transfer that she was too complicated a kid for this hospital. The problem is no bed, hence no room at the inn... About 8:00 a.m. she was brought up to PICU when she still lies.. Still no room at the inn.. The pediatrician arrived and he said that she could not have the surgery now if she still had c-diff. She would have to complete antibiotic and have stool culture again. I was safe, I didn't have to go right back to Houston. It felt so good to know that the kids could come visit me and I wouldn't feel so guilty.
My prayer is that in this time of waiting that somehow these issues will resolve. That this gut issue, large, loopy and lazy bowel will shrink down and function normally. It is a larger surgery than I want to put her through. At this point I am choosing not to dwell on those thoughts, just get her well and stronger. They just weighed her and she has lost exactly 2 lbs. from when she entered Texas Childrens last week. Of course, that is on a different scale. Thank you for checking in and I will keep you posted on her progress.