Hi everyone,
Gemma is now four and a half months old and weighs over ten pounds.
A few weeks ago we had Gemma on another ventilation weaning plan and she was able to be weaned to minimal settings on the ventilator so we extubated her and put her onto a new type of machine using a face mask. We were hoping she wold be successful but unfortunately she failed after a few hours and had to be reintubated. We are not sure why she failed but the new machine is built for adults and there isn't a version for infants that can support her properly.
Gemma had been having a good five weeks of being alert and active throughout the day and having more movement, having good oxygen saturaion of her blood, and not requiring much suctioning. She was moved into a private room are we were able to bring her out for baths and cuddles and be quite interactive she was very content. Then last Sunday Gemma accidentally extubated herself and required three attempts to be reintubated (with the use of drugs and a paralyzer). Throughout the week she has had a lot of secretions, been quite lethargic, and required frequent suctioning. This may all have been caused by the reintubation but nobody is sure why that would be the case, possible inflamation or another side effect. It is hard to see her go from doing so well and being so active to being like this.
We had a care conference on Tuesday regarding Gemma's future care plan and we were unexpectedly disappointed to hear that the neurologist believes that though Gemma appears to be getting stronger right now, she will outgrown her muscle strength at some point which will lead to a lot of difficulties in her future. We were not given this information before and the doctors aren't sure if providing her with a tracheostomy would be beneficial. We were given a few days to think things over and follow up with a smaller meeting on Friday in which we discussed what in order to move forward in making a decision we would need more information. We requested a second opinion from another pediatric neuroligist (hopefully one with congenital muscular disorders - as the specialist we have now has only seen these type of disorders in older children, they are saying cases like Gemma are extremely rare). We also discussed that we would want more information about the pros/cons of a muscle biopsy (what it can tell us) and to find out about tracheostomies (procedure, benefits, risks) and learning more about what the Canuck Place as to offer.
It has been extremely difficult because we went from feeling hopeful to be placed to having to make a decision about what is best for Gemma's future. Receiving new information has convinced some doctors that 'end of life' care might be the best. But it is very hard not having a diagnosis and to hear this about a baby who has come so far.
It is the most difficult position to be in to see your child grow and get stronger, but have doctors feel that her underlying conditions will be limiting to her later in life. We really don't know what to do but we are hoping that more information will help.
At this point we are focusing on how Gemma is doing, with her recent incident we are waiting to see if this is an indication of things to come or if this is just her recovering from the reintubation.
We really don't know what to do but we are asking for your continued prayers.
Love Amanda, Charlie & Gemma
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