Mac and cheese, Pudding, and no rate on the vent....

Samantha has been having a great time this past week, continuing to charm all of the staff here. She has been talking more and more each day.  In fact, I can't be certain, but it is possible that she is doing better with her speech than prior to her hospitalization.

Val and I did her 2nd trach change this morning.  We have 6 to do and then need to do a CPR class and a 24 hour stay.  The 24 hour stay at the hospital just means that for 24 hours we will do ALL of her care without help from the nurses.  If we pass the "test" and she is medically stable, we are free to go as long as our house is deemed safe and we have our nursing coverage squared away.  We are hopeful we can get everything taken care of and be home within the next month.

Speaking of home, Val and I are realizing that we most likely will be going back to our current house in Lansdale. While Val hates the commute to work (and worries about  being so far from us during the day), trying to sell and buy a property on a tight timeline is just not possible in this housing market. We will keep our house on the market and hopefully sell soon enough. And THEN we can look again and find something that best meets our current needs.

Samantha has been trying food for the past several days. She is allowed thickened liquids and soft foods.  So far she has enjoyed pudding, mac n cheese, and the occasional sip of chocolate milk.  We've been giving her tiny little bites, and she seems fine.  Within the next week she will have a swallow study just to confirm she is not aspirating anything into her lungs.

One new symptom is that she is losing bicarb so they are supplementing that for her.  They are not sure if it is just a symptom of her mito or if it means she is being over-venalated.  To test the over-venalation theory, they have been lowing her vent settings a little here and there.  Today for the first time they took away her breath rate completely. That means that Samantha is initiating all of her breaths. She still has some pressure support of 8 and a peep of 5, but that is it.  We are still going to bump up her rate to 10 while she sleeps.  But, she happened to fall asleep today without her breath rate and I waited a minute before calling the nurse as she was still doing fine in terms of breaths per minute.  When the nurse came in we were discussing how it doesn't quite make sense that she doesn't need a rate right now.  But, so far today it seems she does not. We allowed her to take the entire nap without a rate. We may trial her off the vent within the next week for short periods just to see how she does.

All in all, she had a pretty good week.

Until next time,

Monica