Today is Saturday, April 3rd and Gemma is almost 6 weeks old.
I'll start with the good news;
-Gemma has had quite a stable week and this week we were finally able to get rid of the machine that used to hold all of her medications and IV lines when her PICC was removed, after having it in for 5 weeks! It is so nice to have her clear of all those lines and to be able to rub her arm and put clothes and mits on her.
-The doctors decided to change Gemma's ventilation tube, which caused her to have a reintubation procedure done. I was really scared about this but it went well. There was a big 'leak' around her other tube so by changing it they were able to add a 'cuff' that would allow it to expand as she grows and have better control over her ventilator settings. It is beneficial for her but frustrating that it doesn't seem as comfortable for her as the other one.
-She is tolerating her formula feeds well and they added protein and vitamins to maximize her nutrition.
-She is growing and changing so much, there are so many little improvements that we have seen over the weeks. The first few days after reintubation she was quite lathargic from morphine but she has been moving more and having longer alert periods.
-Her SMA test came back, no one told us... I actually found it in her file from last week that the results came back NEGATIVE! so we are relieved about that.
Not-so-good news;
-Gemma is still very ventilator dependant and we are not sure if she will ever be able to come off. She overrides it at times but not consistantly like we need her to do, doctors and respiratory therapists are concerned that she might not be able to have the ability to breathe on her own and we aren't sure why, it is probably related to her underlying condition. She has had many set backs until now that haven't helped her respiratory situation so we will see what happens.
-We had a meeting with a Neurologist (Brain/Muscle/Nerve doctor) and Neonatologist (NICU doctor) on Thursday and we were told that the results from Gemma's EMG test states that she has a severe nerve and sensory disorder. Her condition is still undiagnosed and they aren't sure if we will ever know what she has, it seems very rare. They are going to try and collaborate some possible tests but have serious concerns about her future and what it will mean for her. These doctors barely know her and we aren't exactly sure how they are coming up with their opinions but I told them that she has overcome so many hurdles and bit by bit she is showing signs of improvement so we will wait and see what she is capable of! I am not going to take them too seriously at this point. Next week I am going to try and set up another meeting with the Neurologist, I was too upset to gather my thoughts last week so it will help for us to ask more questions.
Thank you for all of your continued thoughts and prayers, keep sending positive thoughts our way!
Love Amanda, Charlie & baby Gemma
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