The pulmonologist came and talked to me about the trach. This is a huge decision. So we went over the reasons the trach would be beneficial for her.
First off is that she likes to sit with oxygen saturations of 88, 89. With her pulmonary hypertension they really want that above 95. 95 is almost an impossible dream for our girl.
Then there is the fact that her CO2 level is chronically high in her blood gases. When she is doing well we see upper 50s. But usually we hover in the 60s or even the 70s. This is making her edge toward being acidofic.
So with her pulmonary hypertension and chronic lung disease, he feels that giving her the trach will allow her to have the support she needs. The hope is that her lungs will continue to grow. He said that it’s not true that you grow more alveoli – they do grow larger with you for the first few years of life. Being a preemie, she’ll have less to begin with. Having DS, she’ll have fewer.
The trach may not be a forever thing (!). His guess, at minimum a year. He did warn me that it could be longer. But he told me that she could not go home at her current vent settings. They are too high for a home vent.
He said that with her pulmonary hypertension being as high as it is, we might be looking at more serious meds in the future. There aren’t that many available. She is on two oral ones right now. Some of the others are administered through a catheter that is placed in the body. That might be our future.
Once we are stable again, we are going to go back to working on dieresis and finding the perfect balance of diuretics for Bella. She is on two right now and they are thinking of adding another.
This won’t be a short hospital stay he told me. That I knew. Our last 7 weeks was for her heart. This stay is for her lungs. I’m hoping we are done with major body organs by then. :)