Carmen is home! She is doing much better now and hopefully will stay that way for a long time.

I want to say that we have had a very wonderful experience with the Shady Grove Hospital PICU staff. I was initially concerned about having Carmen at a local hospital instead of at Children’s but the service is wonderful. And, it’s great to be 10 minutes from home versus an hour. The doctors and nurses all know Carmen now and are willing to help in any way they can. I am very comfortable with the care Carmen receives. The nurses are very quiet at night and continually ask if I need anything. They usually bring breakfast, lunch and dinner for me and if I want a salad instead, the cafeteria is very reasonably priced. I think I will send them a big thank you!

I am going to talk to Carmen’s pediatrician tomorrow about ways to reduce her reflux and hopefully help her breathe better. Carmen seems to have a lot more respiratory issues than other children with Tay Sachs and I am not sure why. She does have a variation of Tay Sachs so maybe that accounts for all of her upper airway trouble. Honestly, I suspect that Carmen will not be a child who lives a long time. She is having so many problems with breathing now and is just 21 months old. We will continue doing every thing we can to help her and keep her comfortable. God knows how long she will be with us. All we can do is enjoy each day with her.

We got the extra suction machine today and I am just thrilled to have one for home and one for the car! The suction machine can be used plugged in or battery back-up. We do have outlets in our minivan but I will try my best to keep the machine charged!

Thank you to Sarah and Karen for watching Lauren today!