Just Waiting....

[bryantem]

Now we are waiting for them to say Addisyn is ready to come home. Her pulmonologist says she ready so we are waiting on the pediatrician. Her ped is concerned that her CO2 is a little high. It is at 30. She said that in her history, it has always run a little high and said pulm would deal with it. Her pulmonologist isn't too concerned and is starting her on an inhaled steroid. We also got him to order the pulseox and he said we probably could use it instead of the apnea monitor. It would really be up to us. I am hoping to get rid of the apnea monitor only because the pulseox will tell us she is in trouble much earlier. With the apnea monitor, she will probably be in a little trouble and already changing color by the time it alarms, especially since it doesn't even detect her apnea until her HR drops. He did say the tracheomalacia is better, but we still have to get a better look at the subglottic area. Regardless, the earliest we will be able to look at decannulation would be in the summer, or between the ages of 1 and 1 1/2. This is still ok for me. I don't want to rush her. I am very excited that she is doing this well regardless of when the trach comes out. The trach is easy to manage. It's the O2 that's a pain...which brings us to the O2- he will teach us to use the pulseox to decide how much and when she needs it.

Unfortunately, we checked on nursing and our insurance will not cover it. We have to wait for her to get approved for the state programs, if she qualifies.
________
Rhode Island Medical Marijuana Dispensary

[drct1245]

Not that you want more meds, but another way to assist in the movement of air and therefore lower the CO2 is through xopenex/albuterol treatment, if the the inhaled steroid doesn't help. I don't know if your pulm would be up for it, but we are on xopenex now (albuterol when we had the trach) as a maintenance drug b/c Ayden shows sign of air trapping on his xrays and some etalectasis (sp??). I don't know if a CO2 monitor would even be a possiblity, even though it's just outside the norm, if you aren't going in to see the pulm regulary, the elevated CO2 would scare me. Ayden had high CO2 when he was young and that is why he stayed on the vent, but it had come down as he got older. Each time we saw the pulm, even off the vent, he was always "perfect".
Just some food for thought for ya... hopefully you can go home soon!!!