Update from Kristin: September 3rd, 2008

As somebody said to me a few weeks ago, "all we can expect is the unexpected!" That has proven to be true. We are still in the hospital - tomorrow will be three weeks. We had the g-tube placed a week ago today. They still have not been able to use it, though, because Taylor's bowels "went to sleep" after the surgery. We were told that the g-tube would drain for a day or two and then they would clamp it off, wait a day, and then hopefully start feeds. That has not happened.

The day following the surgery, Taylor was extremely uncomfortable. Her heart rate was in the 140's and she looked so uneasy. She would not talk, and she did not even want to watch tv! I think she was very nauseous and the pain control was inadequate the first day or two. Eventually, we were able to get the pain under control and she started coming around a bit in the next day or two. However, her tube was still draining a nasty green bile and as of today, the surgeons still are not happy with the color and volume of the drainage from her stomach. They want to allow her another day to drain before we try to clamp off the tube.

Another issue which we were facing up until yesterday was a serious bout of constipation. She had not gone to the bathroom since August 20th! She didn't say she felt like she needed to go and she has been on iv nutrition so we weren't certain what we should expect. But the doctors were quite concerned and said that her bowels were quiet and that even without food, they should still be moving. They sent her for an x-ray of her stomach and decided that they needed to decreases the amount of dilaudid (the narcotic) that she was receiving.

Yesterday, with much celebration, she went to the bathroom. She probably hasn't seen this much celebration over a trip to the bathroom since she was potty trained! And really, since she started going to the bathroom, she hasn't stopped. We are always facing extremes! (I look forward to the day when Taylor is a teenager and she can look back and read this blog and be completely embarrassed at the information which we share with all of you!)

Another issue that we are anxious about it is when she can have her next chemo treatment. She was due last Friday. The original plan was for surgery Wednesday, chemo Friday, and home on Saturday. We had to adjust that quite a bit. In fact, the surgeons want us to wait three weeks for chemo! This seems to be pretty humorous to the hem/onc doctors around here because, as the attending said, they do craniotomies and still do chemo within two weeks, so a little g-tube is nothing to them! BUT they want to be respectful of the surgeons and have repeatedly asked why they are suggesting three weeks but they have not been provided with a response yet. So we will continue to wait and read books and do crafts and play games until we can proceed. I try to remind myself that even though we would rather be at home, it is nice to have this time to just sit and spend time with Taylor when she isn't feeling too sick and miserable and try to enjoy our time together.

The only other issue that we are facing is that they are trying to wean her from the dilaudid. She was receiving .16 mg every hour from the pump and she could push a button and get another .1 mg every six minutes. She spiked a little fever two days ago and was a little uncomfortable and pushed her button 14 times that day. I asked the resident how much more pain medication she was receiving compared to the maintenance dose she gets at home. After careful calculations, they discovered that she was getting over seven times her usual dose. Wow! No wonder she was so mellow for so long, she was stoned out of her mind! So...they have taken away the .16 mg every hour and now she has to push the button when she needs anything and she can do that every half hour.

I was a little concerned at the drastic reduction because we had been through a morphine withdrawal before and it wasn't fun. Her nana stayed with her last night and was very diligent about being certain that she didn't become too uncomfortable and she didn't complain of too much pain. However, she hardly slept at all and was really fidgeting this morning when I arrived but she refused the button when we offered it to her. After talking with the doctors, we agreed that as long as she isn't in pain and isn't too nauseous, we will tolerate a little agitation because we certainly don't want her taking all those narcotics if she doesn't need them.

She is also having a hardtime resting because she has a very loud roommate (nice, but loud) and she is refusing to take any benadryl or do anything to make herself more comfortable.

It has been a very long three weeks. Charlie has been on vacation the whole time and is tired of the unpredictability and misses Mommy and Daddy. Today was his first day back at school and it was sad to drop him off this morning and realize that I hadn't been able to enjoy much time with him on his break. He is moving into the four year old class and isn't sure what to make of that and then when I told him that I wouldn't be picking him up today because I would be spending the night at the hospital, he got very sad.

Keith has been fighting a bad cold so was banned from the hospital for a while so I had to be at the hospital even more often and Charlie doesn't really understand any of that. But as one of my friends pointed out, Charlie probably will not remember most of this time, amazingly. It will all be a blur in his memory.

Mayfield resumes classes tomorrow and Taylor is disappointed to be missing that because she loves Mayfield. She worked on a collage to introduce herself to her new kindergarten classmates so that has kept her busy. If things work out as we hope, we will get chemo sometime in the next few days and then we can return home. But as Taylor pointed out yesterday, she always gets a fever shortly after chemo which sends her into the dreaded emergency room. Her solution was to just to stay here until then so we could skip the whole emergency room thing. At least she doesn't hate it here that much.