Where to Begin? With Pictures!
This last month Wayne and I have made some very difficult decisions for our sweet William. Of course we were not alone in making these decisions. We had guidance and input from several neurologists and a wonderful Pediatric Palliative care team.
It's difficult for me to write about my emotions now. At some point I stopped doing this blog after our hospital experience with Will in 2012 perhaps as a defensive mechanism. Even as I read back through the old entries I feel raw and exposed. Maybe I've become used to bottling up my fear and worries for him rather than expressing them.
William's body temperature has not really been normal since 2012. At times it does reach the more typical 97F but 94-95 is more normal for him. When he is very lethargic it will drop to 92/91 and he requires "warming". Neurologists have termed this lethargic/cold state "hibernation". William's brain malformation is the cause and as his body gets bigger his brain may struggle to keep up.
So in 2012 Will's neurologist told us that his brain may be shutting down yet here we are 4 years later!! I can't remember exactly when we started working with palliative care. When I was pregnant with Erik we started shifting more to home care.... suction, oxygen, monitors, and nursing in the home. Having oxygen at home has saved us countless hospital stays! I think a common misconception of working with palliative care is that your child is going to die soon. That is not always the case as many families work with palliative care for years like we have. The team works with parents to improve the child's quality of life.
In December I did bring William to the ED at Strong hospital because his body temp was below 90 and he was not warming... this time his heart rate was going into the 30's and his respirations per minute were very low. He didn't appear to have a cold virus or any other symptoms so I was pretty scared. We spent a night at Strong and had many tests done (again) and eventually Will warmed and woke up. Once again I was told that the part of his brain that controls basic body regulations is under developed.... nothing else was going on. The blood tests, urine culture, etc came back normal. He has had a handful of good days since but mostly he has been lethargic and his body temp mostly stays below 93 despite warming efforts... and recently he has more seizures when we try to warm him up. (We are currently adjusting seizure medicines). We were also told that having a constantly low body temp eventually is hard on the heart. No one is sure what to think or what to expect so Wayne and I decided to prepare for the worst. Putting a DNR (do not resuscitate) in place is not a simple or emotionally easy task. A MOLST form most be completed and doctors have to present medical evidence to a court. This is to protect of people with disabilities that can't speak for themselves. That being said... we do not want William to be put through intubation or on a ventilator if he has a breathing event. William is a kid who likes to be comfortable. If his brain can no longer sustain his body we want to let him go as peacefully as possible. Believe me.... I hate typing this... I hate thinking of him dying.... and I pray that there is a heaven. Ella says that there is a heaven with giant trampolines and loved ones are waiting for us there.... please let her be right!! I hope someday to see William smiling (more than for a few fleeting seconds) and jumping his heart out on a heavenly trampoline.
I have so many wonderful memories and pictures with my beautiful son. It's been amazing to see him interact with his little brother and continue to love his twin. We had the opportunity to go on a wonderful make a wish trip in 2013 when he and Ella were 6 and Erik was just 6 months old. Every summer we do an annual Adirondack trip, which William loves, despite the 6 + hour car trip. Last summer we brought his oxygen tanks and he slept through most of the trip. Yet, he did have some good alert periods.
I hope that I have many more years with my son. I hope that the bookshelf I am filling with books for him can all be read WITH him. I hope that when he leaves I can still be a good mom to my other kids and survive past the grief. But for now I am living in the moment and trying to do my best for William to live a full and good life.
" I wanted you more than you will ever know, so I sent love to follow wherever you go." "You are my angel, my darling, my star..... and my love will find you, wherever you are." - Nancy Tillman Wherever You Are My love will find you" picture book