Asthma Action Plan

We trialed Brooklynn on asthma Flovent medicine. We didn't know if it really worked on Brooklynn's cough or if it was just time so I wasn't convinced she needed to be on medication. So we weaned her off the Flovent. Within 4 days she was coughing, sounding congested, especially after her sleep. So we put her back on the Flovent once a day and it worked on her cough. So we went to the doctor today, who said we should probably just bite the bullet and say she has asthma. We created an asthma action plan - for "green" or how she is now we will do 1 time a day of Flovent, with albuterol for breakthrough. If she has more trouble, than we go to twice a day flovent for 14 days, or her yellow zone. If she gets in the red zone we need to be seen and do albuterol breakthrough medication and have to be prescribed a steroid. Hopefully we never get here.

I also spoke with the doctor about Brooklynn's sleep study. I don't know if you recall, but we found out she has periodic limb movement disorder. Which means she moves her limbs frequently during the night, preventing her from getting good adequate sleep. So we started the iron.

I am a freak of a mom, and since I work in the hospital, I always go to medical records and get all her tests and consults so that I can keep record of all the specialized tests. I also am a visual person so I have to see what they are telling me. Well, reading the report they mentioned some things that they consider to be "normal" but to me doesn't seem quite so normal.

She had 18 periods of central apnea, which I guess can sometimes be considered a normal thing. She did not get woken up by these or stir, except maybe a few times, so this was considered "insignificant". To me, in my NICU mindset, central apnea is not a good thing. But I guess I am wrong. She had 4 episodes of obstructive sleep apnea or hypopnea (where she doesn't breath as well as she should), but none of these woke her up. They stated in their report that these could be underestimated because she only slept on her back 20% of the time, which is the worst position for obstructive sleep apnea. She had 5 episodes of desaturations, but only 86-89%. Again, I guess these are insignificant.

She had multiple periods where she desaturated from her normal range >3% (she would normally sit around 97%, but I guess she would fall down below that multiple times throughout the night). Again, they say this is normal.

She had a peak pCO2 of 51mmHg, which I guess is normal as well. I feel like, again, NICU mindset, 51 is not normal (normal range is 35-45mmHg, but I guess people have periods of having higher than this?)

She had one period of 5 minutes where she had 7 short, central apneic episodes, with desaturations ranging from 86-89%. To me that is significant, again they don't feel like it is.

I asked the doctor about this, and she stated she is not quite sure what to think. She has the opinion that the pulmonologist probably knows what is significant and what is not, but she will call them and ask them some more questions. I want to know how long these apneas were, why the are considered insignificant, and if I should be worried about these increasing when she gets sick. If she gets a stuffy nose, she sleeps so much more worse at night. Sam and I hear her waking up and gasping, and pausing her breathing after coughing, or even after she tosses and turns. But her sleep study doesn't reflect anything that we should be concerned about I guess. I asked if someone else looked at the sleep study, if they would find the same thing or if they would consider her episodes significant. She said let her call the pulmonologist and see what they say.

I don't want to sound like a crazy mom, or a crazy nurse. I want to trust what the doctor says, but I don't see how having multiple desaturation episodes at night is not significant, even if they are only into the upper 80's. Maybe I am being a freak. Maybe I should just relax. Maybe I need to just be happy that the doctor read it as normal and be on my way. But something keeps nagging in the back of my mind that tells me her sleep is not normal. I just wonder if this voice is one I should ignore and I am just worried for nothing.

Oh well. For now, she will continue to sleep in our room in her crib. Until Sam and I can get up the courage to try her in a separate room. I just don't know if I will ever feel comfortable with the way she sleeps.