Sadbh had another rough night. She slept sound until 2 am and from then on she had coughing fits every 15 minutes or so, each time we had to suction her trach.
By 4am, she was ready for food and when it came time to suction, I removed a large mucus plug from her trach.
Afterwards she fell back to sleep and was in a deep sleep when I got up to go to work at 5:30am.
Sadbh had a follow up appointment with her physical therapist Robin today at 1pm and Robin was very pleased with Sadbh’s progress.
She made her a new sleeping wedge and showed us how to phase Sadbh from sleeping with a swaddle to sleeping with her arms free.
Since she has a trach mist collar at night, it’s important to keep Sadbh somewhat stable in her bed, so we will continue to use the wedge for a while longer.
After our meeting with Robin, we headed over to the otolaryngology department for our check up with Dr.Inglis, Sadbh’s Ear Nose & Throat (ENT) specialist.
Before we met with Dr. Inglis, the nurse measured and weighted Sadbh and despite still measuring 25 inches in height, she did gain 5 ounces since her visit with her pediatrician on November 2nd.
After discussing Sadbh’s development progress, and current situation regarding her vocal cords including the lack of progress with the Passy Muir valve and increased secretions and mucus plugs, Dr. Inglis discussed a few options that we can consider.
The first option is to remain as is with the 3.0 Shiley trach, and wait for improvement naturally.
The issue with this is the constant fear of asphyxiation due to thick secretions or mucus plugs.
The reaction time once her airway is closed off is just over a minute. If we were unable to clear her airway within that timeframe, the results would be disastrous.
Another option to reduce the risk of asphyxiation would be to insert a larger trach, possibly a 3.5 or even 4.0.
This would increase the size of her airway, reducing the risk of blockage, however since the trach is larger than what she currently uses, there would be less chance of air leak past the trach, so we would not see any potential speech development, or signs of vocal cord improvement.
Now that she is a little older and since her airway is a little larger, we could look and an option to inject Botox into the muscle that closes her vocal cords.
This is common practice in older patients, however Dr. Inglis has not yet performed this procedure on an infant.
He explained that he carried this out on a two year old child and the outcome was successful.
This would be a temporary solution, and would require additional shots every few months.
It would however allow us to decannulate (remove the trach) Sadbh after the Botox has taken effect, and this would allow her to further develop her speech and reduce the risk of complications due to having a trach.
That said, Botox is a toxin that is derived from Botulinum toxin, which causes Botulism poisoning.
Dr. Inglis also discussed the option for using a suture to tie her vocal cords in an open position, however this is not a recommended solution at this time due to her age and size.
After we ran through each of our options, and after he addressed all our questions, it was time to pass a bronchoscope in through Sadbh’s nasal passage to take a look at Sadbh’s vocal cords.
Up to this point, Sadbh was fast asleep in her mum’s arms. Needless to say, once Dr. Inglis inserted the bronchoscope into her nose, Sadbh became extremely irritated. Can’t say I blame her.
It took a few moments to get her calmed down, and when she did, Dr. Inglis noticed some improvements in her vocal cords. They are still shutting tight, which is what we expected, however it did look like there was some slight opening in the cords.
Before getting too excited, we want to point out that her vocal cords still have a long way to go before they are open enough to allow for adequate air movement to fill her lungs. Dr. Inglis was encouraged by what he seen today, however he still remains cautiously optimistic.
Our options are still on the table for consideration, and it leaves us with very mixed emotions.
We could stay the course and deal with what is normal in our lives, and deal with sleepless nights, ready to react every time we hear her struggle for air or when she starts a coughing fit.
Or we could take the easy way and have Dr. Inglis upgrade her trach to a larger size, with the compromise of greatly reduced speech development.
Or we could inject Botox into Sadbh’s vocal cords every few months as a temporary solution until they resolve on their own.
Thankfully, we did not have to make a decision then and there, and we can get back to Dr. Inglis whenever, or if ever we decide to change how we want to treat Sadbh.
On our way out of Dr. Inglis office, we stopped off at the admin desk to book our next appointment and Sadbh was full of smiles for all the office personnel. She got so much attention from everyone and she put on quite the show.
After about ten or so minutes of flirting with everyone, we noticed that no one was taking our details for the next appointment, and when we inquired, we were told that appointments could be made at the office in the next room. Thankfully Sadbh’s flirting hid our embarrassment.
We have a lot of research to do before we make any decisions, and it might be some time before we do take next steps. Hopefully things will resolve themselves in the meantime.
Take care,
Wayne, Katie and Sadbh.
