When we entered the elevator at CHOC last Wednesday to go to the place where Jenelle was to have surgery, Brett and I looked at each other and said, "I hate this place!" Clearly, there wasn't enough time to pass between this stay and our last less than a month ago when Jenelle was there for 8 days. Thankfully, the only "highlight" of our stay this time was the earthquake we felt on Thursday before going home.
We got home from the hospital Thursday evening, and I started to feel very overwhelmed. One good thing about Jenelle being on a feeding tube is that insurance pays for Pedisure (which is so expensive, it should be a crime!) Meds sure have been a breeze as well! Late Thursday evening, the "home health" people delivered our IV Pump, IV stand and case of Pedisure along with IV supplies and paperwork. A nurse showed up at 8:00 pm and stayed until 10:00 pm showing me how to work our new toys! Jenelle will be getting 2 cans of Pedisure slowly pumped into her feeding tube over 10 hours during the night. This is in addition to our normal feedings by mouth during the day and should supplement her daily nutrition adequately.
When Jack got home on Thursday, I sat down with him and explained that Jenelle had surgery and was now going to have a "feeding tube" sticking out of her belly. After explaining what it was for and what it looked like and that he should never, ever touch it, I asked if he wanted to see it. He said yes, so we went into Jenelle's room where she was in her crib and I pulled up her shirt to show him the tube. Jack looked at the tube, then said, "Mommy, she has a gas tank now!" (he is right in more ways that one!) And that was it - he was relatively un-phased by the whole thing!
Jenelle was quite irritable all weekend - which is understandable. I swore to the doctor and nurses that if anyone was going to "pull out" her tube by accident, it was going to be Jack. Well, guess who almost pulled it out the first night? Yep, me! I was putting Jenelle back into her crib after a diaper change and the tube got caught between me and the crib rail. She screamed and cried, I screamed and cried, and if anything, I think I just made the incision area a bit more sore than it was, and luckily the tube did not come out! The great news is that other than the few seizures we saw after surgery, Jenelle has not had any. Her behavior has been different since we got home; she is not sleeping well at all, and still cries inconsolably at times - the party queen of the night has returned, but she's a cranky queen! Sometimes it is as if she just wanted to be held by Mommy - which while I love it, it can be exhausting 4 days in a row (which further demonstrates why I prefer to be a working Mom!) At the worst, she could be demonstrating typical two year old behavior - which is wonderful and frustrating at the same time! The insomnia is not fun, and I have a call into Dr. Patel and Dr. Shields to see if they have any ideas.
Other than that - we are hanging in there! We are tired and frustrated, but we're hanging in there! Thanks for the continued prayers -I'll keep you posted! Oh yes, and Happy Belated Father's Day to all the Dads out there!