A couple of days before Thanksgiving Emma had a follow-up appointment at PCMC (Thanks Erika for driving us)with Dr. Kang. Dr. Kang is her pulmonologist and also follows her at the sleep clinic at Primary's. We finally have gotten Emma to tolerate her CPAP mask long enough to move on to the next step. I discussed some of my concerns with him about the mask because it didn't fit her good. So, he decided to change her to a full mask which covers the mouth and nose. I feel it is a good thing especially since she is a mouth breather(It's a Ds thing). He increased her pressure a little bit and added oxygen with her CPAP. The next step is to schedule the sleep study when she handles the mask with pressure for at least 4 hours during the night. At that point we will head up to Primary's for yet another sleep study to monitor her levels during the night while on CPAP to adjust her pressure and oxygen to optimize her breathing the best they can. Emma is doing really well and is tolerating it all night she just won't wear it 2 nights in a row. A few nights ago she started to get sick of it and was fussing in the night. I decided to not push my luck that night and switched her to the oxygen cannula. As soon as that mask was off she practically dove into the pillow and actually sighed with a smile on her face. I have never seen a little girl enjoy a pillow more in my life. I wanted to cry for this little girl who is now being robbed of even soft pillow joy. On the bright side, she doesn't have to wear the tender grips(they kept her from ripping out her cannula) on her cheeks anymore. Dr. Kang also expressed his concern with how many current issues she has going on. He advised me to consider meeting with an immunologist and to look into having her immune system tested. The next morning was her yearly well child check. I discussed it with her pediatrician and he then called the immunologist at Primary's. Later in the day, her pediatrician called me back and ordered a bunch of tests that the immunologist recommended. I guess they are mainly looking at her t-cell function. I don't really know a lot about it but we went ahead and took her in for the testing. It was good timing because she always has a bunch of screening tests each year around her well child. Her thyroid is always checked and she is always screened for luekemia since kids born with Ds are at risk for hypothyroidism and leukemia. We took her into the lab the night before Thanksgiving so hopefully we will hear something back soon. We meet with Dr. Park her E.N.T to follow-up after the ear tubes this coming friday. They are going to check her hearing again and then we will see if these tubes are staying in. In a couple of weeks we are meeting with Dr. Downey to discuss her gastric emtying study and stomach issues. We are very anxious/nervous for that appointment........
Her first night with the new mask
You can see the oxygen tube with the green cap connected to the main tubing
We thought it was funny that she was grabbing
the tubing just like she does the nebulizer