Thank you for your support!
Noah was stable and improving every day after our first visit to the hospital in November 2019 and then on the morning of March 14th he woke up breathing very rapidly. We were concerned and initially though he was congested so, we went through giving him a steam shower, relaxing him and using Vick's inhalers. Nothing worked so we called the ER of his treating hospital and spoke to the oncologist on call. I recorded some videos and sent them to her and after a few calls back a forth she advised me to visit the ER with Noah.
I'll start by saying, this is a decision I regret to this day. Because he did not appear to be in any immediate pain or discomfort we were overlooked while other patients were seen. As we sat in the waiting room Noah became more anxious and his breathing became worse. I believe many of the symptoms get aggravated when Noah is in a high stress situation and his anxiety continued to increase as the minutes passed. We waited almost three hours before being taken back to a room and then the ER doctors started treating us for a high bi-carbon. I repeatedly mentioned his diagnosis and that didn't seem to matter to them. After several hours of failed attempts at controlling his breathing (and in fact the respiratory rate increasing) we were admitted to the hospital...the doctors were stumped and started thinking it was due to tumor progression. I'll go into more detail regarding this experience but, I want you to understand one thing from this summary...YOU are your child's best chance of fighting this devastating disease. I was incredibly disappointed in the way we were treated primarily because we were patients of this hospital and our treating oncologist didn't even bother to see us until two days later (we were in the ER on a Saturday and she didn't get into the hospital until Monday). For some reason I trusted the staff to do the very best for my son and I realized way to late that they need to be pushed in almost every aspect of his care. When you understand that a hospital is just another business, you realize that you have to challenge everything.
It took us almost two months to get his breathing under control and that was a result of so much research, help from others and trial and error. There are so many aspects to address with this particular symptom because of how long it took to get it under control that I will break it down as best as I can. It will take me several session to accurately explain everything in this section so please contact me if you have any questions about anything.
I wish I knew but, that's how these things happen with this diagnosis. You can never be relaxed and you must constantly monitor your child. I know many people will say you need to be a parent and create memories but, why can't you do both. The better prepared to deal with these symptoms the better the chances are of your child being comfortable and able to have as much time as possible. The way I see it is we have to fight for more time everyday until a cure is found or a successful treatment plan is developed. That said, I asked my oncologist plenty of times about classes for first aid or what else we could expect and she provided nothing. She stated that each journey is unique and while that is true we will all go through similar symptoms just at different stages and with different intensities. In any case I'm here to tell you that you can do a lot to prepare and if a doctor tells you that's not possible or refuses to offer you guidance...SWITCH DOCTORS IMMEDIATELY! There were several signs that I should have switched doctors and I even consulted with friends and family but we always thought things could be worse. When it comes to your doctor I can tell you that there are so many wonderful doctors that are committed to beating this devastating disease so if your's is not one of them switch before you regret it like me.
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