Hi everyone,
It is hard to believe it is mid September, the Summer came and went so fast, though I guess for us the hospital has no seasons. What a busy month, we celebrated Charlie's birthday with Gemma in her room with some cake and party hats last Sunday, this Saturday Gemma turns 7 months old! and next Sunday I look forward to turning the big 30 with my daughter, she will get to have three parties in a row!
I am happy to report that Gemma has continued to do well over the last month, she has been really stable and all of her 'numbers' (ventilation, saturation, heart rate...etc) have been really good. Gemma has had almost two solid months since her collapses and it has been absolutely wonderful having so many great days with her, seeing her wake up smiling, spending the day interacting with her on the 'big bed', playing, having her sit in a chair, giving her baths and having a lot of quality time together. There were times when we would have to worry about Gemma's oxygen saturation, high heart rate, large amounts of secretions and other problems, so it is really nice having her where she is at now.
Over the last month it has been neat to see Gemma doing new things, we were once told that she would only have reflex and not doing anything of purpose, but she proved them wrong now she grabs at her toys and textured books. She shows more expression, rubs her eyes when she is tired, smiles and scrunches her nose and interacts more.
As Gemma has continued to do well and make progress it appears as though many negative medical opinions have changed as well. Everything has shifted from Gemma's uncertainty and talk of discontinuing care to talk of giving Gemma a tracheostomy so that she can have quality time at home. A few meetings ago giving Gemma a tracheostomy was presented but we weren't sure if was an official option. We were asked to investigate the possibility of going that path by speaking with other families and learning about the care involved. As time went on the possibility turned into more of a reality and this past Tuesday Charlie and I sat down with a head Neonatologist to inform him that we want to proceed as it is the only option we see feasible. Gemma can't stay on the ET tube forever, she is growing, grabbing more and risk of extubation increases daily.
The Neonatologist is on board as our advocate and wants to speak to other doctors to make sure that there is a mutual agreement. In the last few days things have been moving forward faster than we expected, a process that we were told could take many months but to our surprise a doctor from ENT came to do a consultation on Gemma today and told us that surgery could be as early as next week!
There is still a lot that needs to be organized prior to the procedure, and if/when it happens there would also be the procedure of a g-tube, many weeks of recovery, nursing training for Charlie and I, organization of home ventilation (as Gemma will require 24/7 care where we she will need nurses in our home in the evening). We will probably need to move into a bigger place that is more practical. We are looking at at least two months before the possibility of taking her home. It is a very exciting and scary position to be in but we believe that we are making the right choice, Gemma will determine her path and we will support her in her journey.
Some of you may be wondering what happened with the ventricles in her brain. Gemma has been having head ultrasounds every week and out of the last five ultrasounds only one showed a slight increase in her ventricle size. The neurosurgeons have seen her twice and don't want to proceed with a shunt at this time. We are hoping and praying that her ventricles are able to drain properly on their own so that she can avoid having the procedure done.
There is a lot going on at this time but we hope and pray that everything goes well. We will keep you posted and ask for you to keep Gemma in your prayers.
Thank you,
Love Amanda, Charlie & Gemma
