Lea had a good night last night, waking up only once around two a.m. After her bath this morning she asked to have Maria brush out her hair and put it up for her. Meanwhile, I went to the cafeteria and got her some oatmeal and flavored yogurt for breakfast, served with large quantities of ice chips, since she can’t yet have thin liquids to drink.

She was able to go all night without any ventilator support or other respiratory assistance. Halleluiah! She tires out easily, and even a five-minute phone call is enough to exhaust her to the point that she needs a nap to recover her strength. She is still receiving nutrition through a tube feed and is eating only for recreational value. They call it “pleasure eating,” and isn’t really a part of the nutritional program; it is just to satisfy her desire for eating and swallowing food.

She has been off the ventilator for nearly three days now without any problems, and seems to be handling the change quite well. The next big change will be to downsize the tracheostomy. We don’t know at this stage whether she will be changed to a smaller version of the unit she now has in place, or whether she will be given the more “permanent” metal version, which can not be hooked up to the ventilator. The metal version is step one of downsizes to close up the trachea.

We are getting closer to a move to the Step Down unit. The mid-level, Brian, came in today and said the staff is trying to reserve the largest step down room, which has a little more privacy, and that it may be available tomorrow or
Tuesday. The nurse, Sue, suggested that I start packing up some of Lea’s things we will want to move to her new room. Little does she realize that we have taken lots of stuff out already; it’s just that we have so much in there it’s hard to tell! 

At 5:30 Sue came into the room and told Lea that she had just had an idea; Lea could do her own voice mail tonight! Sue dialed in, did a short intro, and then held the phone to Lea’s ear and mouth so she could leave a message. It was quite a good message, and she sounded good, though weak. You’ll have to dial in and hear her voice! We may not have voice mail once she is moved to the Step Down Unit.

Lance played games with her all day, in between naps when she had enough energy. They played Skip Bo a couple of times, and an electronic game he bought her called Hangman. We used to play it on paper, so it’s only fitting that you have to buy an electronic version nowadays. But, mostly they talked, and they have had a great time sharing memories and talking about hopes for the future. They ended the night by watching a movie together.

As we near the 100- Day mark of hospitalization, we are beginning to dare to say that we have the end of our stay here in Hartford in sight. Dr Mah is talking to our personal physician back home about various medical facilities that have the ability to provide the kind of care Lea will need upon our return. She will not be going home, but rather, transferring from one hospital to another. But, we will be closer to our friends and family, and hopefully, will be able to draw on them for assistance and support.

We have had photos of Lea hung in her room so the medical staff could get an idea of the spirit that her sleeping body held. Now that she’s awake, it’s her turn to get an idea of the wonderfully powerful pray-ers she has had supporting her. Do you have a digital photo of yourself, or your family or other support group? If you’ve had Lea in your thoughts and/or prayers during her ordeal, and haven’t already sent us a photo, please email her one so she can begin to actually see all the faces of those who have joined together to support her through prayers and good wishes. She has enjoyed those we’ve already received.

Thank you for your unending support. If you need for us to pray for you or a loved one, please let us know.

Advertisements