We came back from vacation to the harsh reality of Bryan putting in 72 hour work weeks and spending 14 hours a week commuting. I know we should be grateful that he has a job when alot of folks don't. Another negative of an economy like this is that prison system gets busier. Good for our wallet with the amount of overtime available, but sad in a sense that people get more and more desperate to do what they need to for their families.
We are in our own desperate situation on a few fronts. I alluded in my last post that things weren't all that great for Brigitte. Sometimes that's even hard for me to believe when she had a good night like tonight. I spent the morning in at CHB meeting with her team once again. They are planning an admission for this month....or I should say, we are hoping it happens this month.
For three long years, we have been playing the gtube-central line game. A few weeks ago, we went back to playing the GJ tube game against our better judgement. Unfortunately for Brigitte, I should have held my ground and not moved forward with it knowing it wasn't going to work out. It lasted longer than I expected, but we wound up at CHB last week having it pulled because it migrated back into her stomach. Brigitte isn't like most kids and the complex web of her intestinal organs don't make for a smooth placement in Interventional Radiology. She needs it done in the OR. We can't be going to the OR every few days or weeks to replace GJ tubes, so we made the decision to call that experiment quits. So here we are again with the whole "is she or isn't she" idea of whether or not she is in complete intestinal failure. Its a game I am not going to keep playing. Her emotional status is far more important for us to continue to experiment on a 5 year old. So, we have agreed to one last admission on this issue. The only reason I have agreed to it is that there has been alot of question over the years as to whether or not her issues are behavioral, pain, or a combination of both. This admission is hopefully going to give us some clarity on this. I say hopefully because I am totally jaded at this point. Her team is putting together a very good plan of action and I just hope that all the "to-do's" on our list are accomplished before Brigitte, her team, or myself get to frustrated and call it quits. They are anticipating this to be at least a two week admission.....and that to me means more likely than not, a month. I hope I am wrong. So wrong. The plan is to take her off of her TPN and see how she does. If her behavior escalates due to advancing gtube feeds, we know this is a problem. Then we need to find out whether or not narcotic pain medication can help us push forward. If not, we decide whether to switch to a full psychiatric admission in the psych unit of CHB...if that isn't the way to go, we finally accept that she is going to need a central line and be given IV nutrition for the rest of her life. For those of you who don't know, you can't survive forever on TPN without significant liver damage. At that point talks of liver transplants as well as transplanting intestines etc. begin. So this isn't an easy road to begin walking down on alot of levels. Never once in my life did I think I would be hoping that psych issues were a blessing...but in this scenario, you can live a long life with psych issues. "There are no blessings that can't become a disaster, and no disasters that can't become a blessing." ~~Richard Bach
So, on another side of life.....you read earlier that Bryan is spending over 86 hours a week away from the house. This leaves little time for any kind of family life. He is so exhausted on Saturdays that it takes half the day to recover and get a little bit of sleep, I am exhausted because I have been home alone doing everything by myself....and then we have Sunday and it starts all over again on Monday. One day a week to be a full family? Not acceptable. We are spending more money than we can afford in gas with Bryan going back and forth to work, and me taking Brigitte to CHB which has been roughly twice a week if not more this summer. Its been old for a while, but has just gotten that much worse this summer. Did you know that the divorce rate for parents of children with special health care needs is roughly 85% ? This is not what we want for our family. We have worked far to hard and for far to long to become a statistic. My kids have been through enough and I deal with far to much on a daily basis to add divorce to my evergrowing list of stressors. I cannot and will not let it happen. Soooooo.......we are moving. Fast. Seriously. *insert scream, sigh, whatever...here* LOL!!!
We have a found a very nice house in a north of Boston suburban home....and we think it is really going to take so much of the strain we have financially, emotionally, etc. off of our plate.
I'm sure alot of you are wondering how in the hell we are going to pull this off and get ourselves together in three weeks. One thing I have learned through this journey is that there is always going to be stress. It's a given, especially when you love and adore a child like Brigitte. I have watched that child fight when not a single one of the premier doctors at Children's Hospital thought she had any fight left in her. She's still here. Still driving me to drink on more days than I'd like to admit!!!!!! (Actually, I gave up drinking and diet pepsi, so I am a stark. raving. loony.) So how dare I sit here and say that I cannot do something. Life is hard. Some days more than others. Some hours more than most. I have watched far to many of my good friends lose their daughters in the last year. There may be a day when I am that mom......but in the meantime, my only goal is to make the most of every single day my daughter has on this earth; and make it a damn good one. Thats it. END. OF. STORY.