Just a few hours with her feeling the way she was, and not knowing how she was doing in the ambulance or in the hospital while we were driving to get to her, felt like an eternity to me.
I have to say that the nurses in the Children's Hospital ER were absolutely wonderful. They knew exactly what to do to put Amazing Grace & me at ease. They were helpful, great at explaining things, and so caring for the patient and the parents. Not something I can say for the nurses in the rest of the hospital.
Even Amazing Grace's intense fear of needles & passing out at the sight of blood was handled in such an awesome way. For any shot or blood draw, Amazing Grace has always put her head against my chest & I shield her eyes & tell her every step what's going on..."you're going to feel the alcohol" & "the needle's going in" & "you can look now, the vials are put away."
As the vampire, aka blood draw chic, came in to take blood, I went to Amazing Grace's side & her Dad wouldn't let me get to her. He said he would hold her hand. I had to tell him several times that it's not about holding her hand, it's about not letting her see any of it, and that she's always relied on me to put her at ease. That was just the beginning of the drama he was to start at the hospital. Fun guy, I tell ya.
The vampire had spray to numb Amazing Grace's arm so she didn't feel the needle go in, which was awesome! She explained everything as she was about to do it. She even hid the vials under her coat until she left the room, without me asking her to. She knew exactly what to do with someone who can't handle the sight of blood. We loved her! She definitely works in the right place because she knows how to take care of children.
The surgeons came in & told us that Amazing Grace had intestinal malrotation and a volvulus. She also had knots in her intestine. After further tests they decided that surgery could wait until 8:00 the next morning. By this time it was almost midnight & as much as I wanted my baby girl fixed NOW, I also understood that these surgeons had been on their feet & working since early that morning & I would prefer to have a surgeon who had gotten some sleep. I also know the difference between the potential outcomes & risks for emergency vs. planned surgery.
On the left: a normal intestine. On the right: an intestinal malrotation with a volvulus.
A closer look at just a volvulus.
They admitted my girly to a room on the 9th floor & we got her settled in to rest before the surgery. As her new nurses were getting her comfortable, I had to sign paperwork for her surgery.
I was being told that they would put her intestine back to where it should be but it wouldn't be exactly like a normal intestine. The surgeon explained that it's like a hot air balloon being tethered to the ground. All the ropes hold it in place. She was born without all the "ropes" so it twisted like a hot air balloon would if it was being held by only one rope. Then he explained that they have to take that one "rope" that she has & fan it out like a Chinese fan to create a stronger hold. The risk with it is that this twisting can reoccur because fanning one "rope" is not going to be as strong as having all of the "ropes" of a normal intestine.
In addition to this, they would remove her appendix because with it not being in the normal place, if she ever had appendicitis, she would not present with typical symptoms & the risk of dying from appendicitis is higher.
Then they hit me with this: her volvulus was going to be untwisted but because of what they saw on the scans, a portion of her intestine was being deprived of oxygen & that portion would have to be removed. They were going to be doing a bowel resection. There was a very high chance that they would have to remove all of her intestine & she would have a colostomy.
The hardest part for me was signing the paper that said I understood that they were monitoring her & it could become worse & they would do emergency surgery but there was a possibility of death. I've been through many surgeries, I know that death is a risk with any surgery. I had to acknowledge that risk when my red head had her tonsillectomy. There was a difference though; the risk of my red head dying from her tonsils being removed was such a small risk that I didn't even consider it. This time I was being told that it was a very real possibility.
I told the nurse to add Benadryl to Amazing Grace's morphine drip so that she would fall asleep. As she was drifting off to sleep, I signed that paperwork with my hand shaking so badly that you couldn't even read my signature, and then I stood next to my sleeping girl & sobbed like a child. I couldn't take my eyes off of her & didn't want to leave her side.
I finally laid down on the tiny little hard plastic love seat thing (because her father wouldn't let me have the recliner next to her) & every time she moaned I flew to her side until the nurses got her morphine for her pain. I did not sleep at all & spent the night researching what she has, texting/emailing family who posted on The Facebook for me to keep friends updated, and I actually even worked on some homework. Who knew my homework, a stress in itself, would become something I would use to distract me from a stressful situation?
Sleeping with comforts from home.
To be continued...