First off, Aimee is doing really well. We conceded to putting her on oxygen at night through her bipap about 2 weeks ago. Her Pulmonologists were unsure if this would cause her to have more central apneas, but in the end decided that it was a necessary step. I was not optimistic about this change, but was I ever wrong! Since starting her on continuous low oxygen she has gone from an average of 6 major desat episodes per night to 1-2 minor episodes. It is remarkable! We are incredibly thankful to have found a solution.
So, that being said, her carbon dioxide levels are high and she has begun to take long pauses in breathing while she is awake. At this point, she is in a stable place and we, of course, hope that this will continue. However, not knowing how long the plateau will be, the Pulmonologist has asked us to start the future conversation. He says that we have hit the end of the options with our current set up. If she continues to progress and we start to see prolonged central apneas during awake hours, the next intervention will be a trach with a vent. He says that now is the time, while Aimee is stable, to consider how far we will go and at what point we will stop adding interventions.
It is an ugly conversation to face. I had always assumed we would do everything possible to keep Aimee with us. Now that we are further on the journey, I can see that may not be the most loving choice. Fighting and holding on tight is right and good, but there may be a line crossed in the future when loving her will be saying "enough".
For now, we savor the day.
Sweet Sister, my heart aches.....
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