I know this is not the end of the world. I know this is likely a temporary set-back in the respiratory life of the Basekamp Airway Clinic. I know I was expecting to hear these words at some point with one of my children. I am working to come to grips with a possibility that it could be 2 of my young children.
We had an appointment with a sleep doc at our children’s hospital. I was hoping for a good appointment, something worth the extra travel, wear & tear on my car and my kids… The doc was GREAT. He took a complete and detailed history of each of my children. He asked questions about the treatments we used in the past, the ones we do now, their scheduling and how effective we feel that they are. He used all this information to work out a plan for each of my children with regard to upcoming sleep studies.
There was some good news: neither Keva nor Adrien will need to be admitted to the Intermediate unit for their studies. They were sent for chest x-rays so he could assess inflammation & scarring in their airways & lungs. Both girls will have baseline sleep studies, with no breathing intervention. This will mean a need for an additional study for Keva if he feels like her apnea needs a BiPAP trial, but means easier preparation and scheduling for the initial study. It also means having Adrien attempt sleep without mist for an overnight so they can get good data about oxygen and co2 levels- which is unnerving, but may provide valuable data as we move forward in her life with a trach for the next few years.
He said many hopeful things about central apnea- that based on its timing during sleep, it could be bound to natural breathing transitions [awake to asleep] and may be low enough intensity not to require intervention. This description gave me hope we might not be talking mechanical ventilation for my youngest! Cross your fingers!
Back to the title here though, you note I have yet to bring up Tavish… The sleep doc is pretty sure the current oxygen dependence is an indicator that we may be looking at a need for mechanical ventilation of some kind. He said the options could be either BiPAP delivered to the trach – or a ventilator. I was afraid of this, but I was not prepared for this discussion… The doc reviewed Tav’s x-ray from the beginning of March. He was happy with the absence of scarring throughout Tav’s lungs- common across preemies- but was not happy with the level of inflammation of his airways. His plan is to treat Tavish with an arsenal of oral steroids, oral antibiotics, and a month of inhaled antibiotics. He wants to check in then to see where Tav’s respiratory status is, then schedule a sleep study most appropriate to then.
The doc still feels the results will put Tavish on mechanical ventilation at night when we have study results, but he’s hoping a month’s intervention will minimize the settings. I am completely discouraged about this possibility. The doc feels like this support might give Tav the energy to be more well, to be stronger during the day, to gain weight again. He also feels that the support will be temporary, something we wean… but it still feels huge to me.
