So it has been just over a month since our last blog post. Reading it, I just noticed I kind of left everyone hanging.... Sorry about that. We are back at UMDNJ hospital in Newark, NJ. It seems our little Mary just can't catch a break. Jackson had a little cold all last week, mostly just a really runny nose, and despite our best efforts to keep the two apart, when you are home alone with a 2 year old, trying to take care of a 3 year old with SMA, it becomes impossible. So Mary finally came down with Jackson's cold sometime last Thursday. Ryan stayed home from work and we worked very hard to keep Mary cleared out, and stay ahead of the secretions, but they just became overwhelming and we were having to use lots of oxygen at home to keep her sats up so that is kind of our cue to start moving toward the hospital. At 4:00 am on Friday we packed up the van and headed to Keller, leaving Jackson sleeping in bed with our neighbor at the house. soon Ryan an Mary were in a helicopter on the way to university hospital. This time the helicopter started and we got there with no issues.
Mary had been pretty stable through the weekend and we were going to discharge yesterday, we had the van all packed up, but before we left we wanted to do another treatment to get her good and cleaned out before we got on the road. Following her treatment, she started desatting into the low 70's. We brought the RT in and did a lot of NT Suctioning and just kept getting more and more secretions. We decided to stay another night. Tonight, we've had more of the same, Mary has been very wheezy, so we have been using pulmozime and albuterol. Following her treatment at 2:00 am, we spent about 2 hours cleaning her out and almost filled a suction canister. We just did the same thing at the 6 am treatment. The RT says this is similar to the level of secretions he sees with RSV. Her rapid RSV came back negative, but we are supposed to get the respiratory panel back today. The doctor suggested that it could possibly be MPV.
Anyway, we are unable to get Mary completely cleaned out, she is still on her bipap, (LTV 950) we have her on 1 liter of O2 to keep her sats above 95.
Ryan and Kate