“A what ?!” This is usually the response I get when explaining what Nienke is getting. Not a strange response at all because in the Netherlands it is not a well known treatment at all. Until now only used in adults with a spinal cord injury or ALS. And then only 11 times. All successful by the way.
Let me go back in time just a bit... June 2018 Nienke needed nighttime ventilation. (I'll get back to that in another blog). As of November 2018, it turned out that her daytime breathing was also getting worse. Then we had a conversation with her physician in which we as parents were told that Nienke needed a tracheostomy tube. She would be operated within a few days. (A tracheostomy is an opening in the throat where a tube is placed). Nienke would then breathe through the tube and be ventilated through the tube as well. A treatment that we as parents had absolutely not counted on. Many children with the same condition as Nienke have a trache and if necessary we would certainly do it, but I just felt the need to also look into other options. I can clearly remember the night following the “bad news conversation” . I lay on a stretcher next to Nienke's hospital bed knowing I should try sleeping but my head was spinning. I had been researching other possibilities for hours. Though initially there seemed to be no other way than to follow the advice of her doctors, I saw some hopeful messages on the internet. I discovered that there is a boy in the US with the same condition who used to have a trache but has now also has had a diaphragma pacer for many years. A small device that stimulates your diaphragm to contract. When your diaphragm contracts your lungs expand and fill with air. I couldn't stop reading and got really excited about this possibility. But... if a mom is enthusiastic about a treatment it doesn't automatically mean that the treatment can be applied and certainly does not mean that it will work. The next morning I requested a meeting with her attending physician to inquire about the options. The way the doctors listened to what I had found amazes me to this day. Even though they had never heard of the treatment the were willing to look into it. Not once has her team said to me: "Are you sure about this?" On the contrary, as soon as they had done their own research everything possible was done to see if we could arrange this for Nienke. Thanks to the incredible teamwork between all the specialists throughout Europe.
Looking back, I would have liked to start my blog earlier. I would have liked to share the difficulties that came and were always wonderfully resolved. Doors that were closed and other doors suddenly opened. One of the things I've learned is that God wants me to depend on Him. I like to make plans and often know how I want things to happen. So far this journey has been one plan afer another going completly different than I expected in advance. It has taught me to ask God over and over again: what do You want me to do? God expects me to do what I can. Then I can let it go and let God. One day at a time.
original post: May 12,2020