Back to the old haven't posted a personal blog in a long time so it't time to get out some of the pent up feelings I have inside. This will probably come across as a "woe is me" rant but I don't care at this point. I don't have a counselor to talk to so this screen will have to do for now.
I'm tired of watching my kid die! There it's out in the open. This last year and a half has been terrible! Of course there have been some bright points but overall I'm just over it! When Maddy started rejecting I was very hopeful that they would be able to stop it in it't tracks and then things would go back to her having a chance at a real life again. When they couldn't stop it six months in I started to lose my positive attitude but I'm forever the optimist so things still looked hopeful to me. Then after a year of treatments to fight off the antibodies things started looking a little normal again. Maddy was driving herself to doctor appointments. Yes she needed O2 but not much and things looked like they were on the upswing. Then they told her they had the antibodies under control but her lung function wasn't coming back so the only answer was to re-transplant. Scary but way better than living with only 25% lung function. At least we had something to look forward to.
I was still feeling ripped off! I was thinking that the transplant would give a good 10 extra years, not a measly two! How can anyone get their life on track in two years? But as usual we have to make due with the hand we have been dealt. So here we go! Then just as I think we are on the road to getting re-listed and back in the transplant game life starts throwing curve balls at us. First Maddy's insurance changes and we are having to fight for authorizations. Then Maddy gets a viral infection. Then Maddy gets a concussion in a car accident. Then Maddy goes crazy from the concussion. Then Maddy goes crazy from the meds they put her on for the concussion. Then she gets another viral infection. Then Maddy gets pneumonia. Then the docs drop the bomb that she is not eligible for transplant because her antibodies are back. And to top it all off they want a plan of action from us if they have to intubate her because she won't be strong enough to come off the ventilator ever again if they put her on it!
Which brings me to the behind the scenes look at her admission to the hospital on January 26th. When we checked in the doctor asked again what her "end of life" plan was. Her CO2 levels were dangerously high and if they couldn't scrub it out of her blood with the bi-pap machine then she would die unless they put her on a ventilator. If they put her on a ventilator she will never come off it again. She will have to live on a vent. She said she didn't want to live on a vent so don't put her on it unless it will make her better. Also the doc said if she has a heart attack she would not survive the resuscitation attempt without becoming a vegetable. So we decided to put into effect a "do not resuscitate" order. The doctors also said that she should make an attempt to see anyone she wants to say goodbye to, just in case the bi-pap didn't work.
So Maddy put out the word to the people she most wanted to see and the room that night was full of family and friends. Fortunately we did not have to say our final goodbyes to Maddy that night. The Bi-pap started scrubbing the CO2 and she was feeling a little better within 48 hours. Best case is using this machine at night will keep her CO2 levels in check and she will not have any more damage done to her lungs, either by infection or by her own antibodies. The worse news is that her antibodies are back to high levels so they are going to have to try and scrub those suckers out too. Worst case scenario is that she continues in a downward spiral and slowly dies.
Honestly that is all I can see at the moment. I see her getting weaker every day. She can't eat, she can't breathe, she can't stop coughing, she has a panic attack every time she has to put the mask on to sleep at night. It seems as if there is a never ending list of things that are wrong with her or are starting to go wrong with her. I'm scared to leave her alone for more than a few hours at a time, but I still have to go to work. When I am home with her I get to sit and listen to her die a little more each minute! Every night I dream we are having her funeral. I keep looking for a bit of sunshine but there is none to find.
Shortly after I finished that sentence while sitting at my desk at work I got a text from Maddy. "Dad my chest hurts really bad. It feels like I have a collapsed lung". Needless to say I did not finish my blog entry that day. As I have mentioned before this blog is my catharsis so here I am writing yet again. Maddy was hospitalized the next day and you can get all those details on her blog.
As I continue this entry is is nearing midnight on March 8th. Maddy has been home on hospice since February 18 and I am still tired of watching my daughter die. In the last 48 or 72 hours, I've kind of lost track, Maddy has stopped eating, stopped using her AVAP machine, and has barely had 8 ounces of fluid in the last 24 hours. She is more near death than I have ever seen and I wish there was something that can be done but there isn't. Some have said there is a certain beauty in being a part of a persons final days. Caring for them, helping them through trying times, comforting them and helping relieve their pain. I will not disagree with that assessment. BUT IT STILL SUCKS MORE THAN ANYTHING THIS LIFE HAS TO OFFER. Especially when that person is your child. I have heard it said many times 'no parent should ever have to bury their child". And every time I heard it I thought "yep, but I'm gonna have to! Probably twice!"
When I sat down to finish this entry I think I had something in mind that I wanted to say. Maybe it was poetic or deep. Maybe it was just frustration. But what ever it was it has left my mind now. I don't know how many more hours or days I will have to watch Madelyne die. But no matter how many it is it will be far too many. I am tired and want to give up right now. But I know that I can't. I am tired and I want to break down right now. But I know that I can't. Because in 19 minutes I have to give my daughter another drink of morphine so she does not have to suffer while she can't breathe. And an hour later I have to give her another medication so she does not have to endure another panic attack because she can't breathe. And during all of those minutes and all of the minutes to come between now and the time she takes her last breath I will sit by and watch her fight for EVERY SINGLE ONE.
Ther is no poetry in this moment. There are no deep thoughts. There is only pain. Pain that I will endure because this little girl taught me how to be a real man. How to love unconditionally. How to live every day like there is no tomorrow. How to look sickness, fear and even death in the face a roar like a lion. Today I will endure this pain so that one day she might find rest.
There I got them out.