December 15, 2009. The day I will remember forever. The day we finally got to bring Noah home after almost 4 months of being in the hospital. One of the happiest and the scariest days of my life.
Babies do not come with instructions, unless your baby has a trach and a ventilator. Before being allowed to bring your ventilated baby home, there are many things that have to be done. The first is that you have to be trained on how to take care of him. This takes several months of training. Our training consisted of myself, my mother and my mother in law being at the hospital 3 days a week for a month. We were required to do three each of everything (three trach changes, three circuit changes, three trach cleanings, three bolus feedings because at the time, Noah still had a g tube, and even three baths. Yes, bathing a ventilated baby is not easy, especially when you are trying hard to keep the water away from the trach). Another requirement for discharge is that they give you a list of things you must have then they come inspect your home to make sure it is similar to the NICU. Finally, after the training is over you must do a 4 day trial in the hospital. This is where you spend 24/7 at the hospital providing all of the care. The doctors and nurses come in occasionally to check vitals but other than that, you are on your own. Another requirement was that we go home with a CO2 monitor. This was (and still is) unheard of. These machines are rarely used, especially in the home. Supposedly, the doctors and the DME (equipment company) had taken care of getting us this machine. However, they had the wrong machine. Instead of one that can be used continuously, they only had one that did spot checks. It's always a bad sign when 2 doctors and the ventilator nurse comes in and tells you we need to talk. Fortunately, they recognized that we had been taught well and were capable of keeping Noah alive at home so they signed the release papers with the promise from the DME that they would get us a better CO2 monitor.
The day finally arrived. However, it wasn't as simple a homecoming as I would have liked. Chris had to take Hannah to the doctor and she was diagnosed with a stomach virus. Beth had her first band concert that very night at school. The DME was to meet us at home with all of the supplies and help us set everything up. Somehow, we made it through the day. My daddy stayed with Hannah. My mother and father in law stayed with both Hannah and Noah that night so that we could go to Beth's band concert. The DME met us before the concert to bring all of our supplies and set everything up. In addition to our regular supplies, they brought us oxygen, which Noah had not needed, and they had to show us how to use that. We finally made it home that night and got everyone in bed.
Looking at Noah at home in his crib, I was both elated and terrified. At the time, he was hooked up to his ventilator, pulse oximeter, sleep apnea machine, and his feeding pump. Our dining room had been transformed to a mini ICU. Watching him sleep, I was overwhelmed with the thoughts of how in the world can I do this? How can I keep my baby alive? How am I suppose to do all of this doctor/nurse stuff when I have no medical training? Not only was I worried about all of the medical stuff, but I was also worried about the boy stuff. Having 2 girls, I had not been exposed to things like cars (except Barbie cars), superheroes (except Wonder Woman), what was I going to do with a boy? This was when I seriously wished that there was an instruction manual.
In addition to all of this stress, Noah decided to get sick. I remember on Christmas Day keeping him on his vent and using the oxygen. Christmas was a little weird that day but at least we were all together under one roof and we were home. Because of this, Christmas is even more special to me. The Christmas trees in Children's Hospital's lobby always remind me of our time there.
Noah has been home for 3 years now. I guess I didn't need an instruction manual after all. We have learned so much. Some things were taught to us by other people but most things we learned by trial and error.
In the midst of all of the gift giving, eating, and visiting during Christmas, I always take a few minutes to reflect on where we were three years ago. We are so truly blessed. I always wondered if Mary felt the same overwhelming fear when she had Jesus. I wonder if she sometimes wished for an instruction manual too.
Happy 3 year homecoming anniversary my sweet, strong Noah.
After reading through some of your post's, I just really wanted to write in and say how great it is your writing about CCHS. It's a condition that is rarely talked about in the medical profession let alone in the public.I know this because I'm currently 21 and have had the condition since birth and have found your post's so insightful to understanding what my parent's must have gone through in the early years. Wishing Noah and your family all the best now and for the years ahead.
ReplyDeleteSarah
Thank you so much for reading, Sarah. When Noah was first diagnosed, I could not find any information on CCHS other than the network and I can only imagine that there was even less information when you were diagnosed. I wanted to create a blog so that other CCHS families would know that they were not alone. I also wanted to create more awareness of this rare disease. Please feel free to chime in with your own experiences. Thank you, again, for reading.
ReplyDeleteMelinda