Sorry for not posting an update yesterday.
Despite being as ready as we thought we could be for our meeting with the ENT team, it ended up being an extremely exhausting day, both emotionally and physically. By the time I got home last night, I did not have the energy to send out an update.
The meeting went quite well considering. Dr. Inglis went over Sadbh's case in great detail and presented us with a number of options to allow her to breath without the aid of a ventilator. This does not actually resolve the issue with her vocal cord paresis, but will allow her to leave the hospital sooner.
Option number one is the Tracheotomy.
Option number two is a Suture Lateralization.
This involves two incisions, one above, the other below the vocal cords, and stitching one of her vocal cords back against the airway. This allows the airway to remain open and unobstructed. This is common practice in adult patients, however this can be a complicated procedure for newborns and infants since their airways are much smaller and do not have much room.
There are a number of concerns for this procedure.
One concern is that the vocal cord could be further damaged by the stitching.
Another concern would be if the stitching were to break, then our emergency reaction time would be only a couple of minutes and the result could be potential brain damage or suffocation due to lack of oxygen.
Option number three is Botox Injection to the vocal cords.
Without knowing the cause of Sadbh's vocal cord paresis, one of the theories is that since the muscle that closes the cords is typically stronger than the muscle that opens it, it might be overpowering the opening muscle. By injecting Botox, it would allow the vocal cords to remain open constantly.
The risk here is that the botox could increase the swelling in her airway, causing further airflow blockage.
Both Katie and I agreed that the Tracheotomy was the safest solution and we are scheduled for this procedure at 3:30pm on Monday. As mentioned before, the actual placement of the trach only takes about twenty minutes, however Sadbh's recovery time can take up to a couple of weeks. From there, she will be moved into the recovery floor for another four to six weeks.
During this time, Katie and I will receive comprehensive training in CPR and respiratory home care. We will be also interviewing home care nurses to find compatible, well trained individuals to care for Sadbh after we leave Children's.
While we don't know how long Sadbh will have to live with the trach, we are comforted in the knowledge that it will allow her to develop and grow as a baby. This is going to be one huge challenge and life adjustment for both Katie and I, but we are in it for the long haul.
Dr. Inglis explained that it could take from six to twelve months before we see any change in her cords, if any. At that time, if we don't see any improvements, we would then start to look at surgical options.
All the best for now,
Wayne, Katie and Sadbh.
Feeling for ya bud.
ReplyDeleteBest of luck to all three of you, you are all in our thoughts.
Emma, Louise & Jonah
My thoughts and prayers are with you, she is one strong girl and lucky she has you two as her parents!!
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