Avleigh's Journey

Happiness is an emotional state of wellbeing and often referred to as the good life. Two years ago when we received Avleigh’s diagnosis that is what we said our goal was… it’s all about her happiness. We have always wanted her to have the absolute best quality of life. All the decisions we’ve made up to this point has had happiness as the focal point. The difference between all those other times and now is that keeping her happy with the best quality of life means the quantity is no longer there. This has been very hard for me to think about much less write about.

Since the incident while we were on vacation so much has happened. We went from full speed of trying to schedule multiple surgeries in effort to control the risk of aspiration. We talked about performing the nissen surgery, placing a baclofen pump and VNS, as well as discussing the benefits of a trach. To say we were overwhelmed was to say the least. While trying to let our minds absorb, learn and coordinate with all the specialists to make sure we were making all the right decisions the unexpected happened once again. Her GI system began struggling even more. Her stomach is no longer functioning. Anything that enters it, whether from secretions or back-up from her small intestines, it has to be drained. If it isn’t drained it will be forced back up as “vomit” and increase her risk for aspiration.

What in the world does all this mean? It means that in order to keep her happy that we have to put aside our own happiness. It means we are faced with decisions that no parent should have to make. It means that there is very little intervention to help my baby other than to keep her comfortable.

So, here’s how it’s all unraveling. Her motility is deteriorating. Our first step was to move the administrations her medicine from the stomach to the intestines. Secondly was to try to protect what motility is left by administering two motility medications. The issue with this is the medication that she needs comes with some pretty serious side effects. She’s been on one of these in the past for short periods of time with no signs of the side effects. However, if you’re on the medicine long term the side effects will happen. In effort to avoid those we will be rotating these two medicines. Next we started her on a medicine to reduce her secretions to again reduce the risk of aspiration. Lastly we’ve decided not to proceed with anymore surgeries. The nissen surgery that we though was so important 2 weeks ago would now reduce her quality of life significantly by causing retching. Same with the other surgery options… We don’t want her to go through recoveries from surgery making the little time she has left with us painful and unhappy for her. We’ve been holding her more and doing all we can to keep her happy. Her motility to this point is continuing to deteriorate. She is having more and more of her formula backing up into the stomach. We know that when the motility goes that so will she. We’re trying our best to by her more time by keeping her as healthy as possible. Luckily she is finally feeling more content and her happiness is shining through. If we can keep her this happy then we are happy.