Today was another tiring day for Lea. She started out just great, as she had seven hours uninterrupted sleep, but then started out the day by being overheated. David, who spent the entire night in the room with her, was slowly rubbing small ice cubes on her forehead and cheeks to cool her when I arrived at six o’clock.

She didn’t want the fan to blow directly on her, although she was hot, and just wanted ice rubbed on her face until it melted, waiting for the air to cool it. She wanted to get in the cardiac chair right away, saying that the bed was extremely uncomfortable, and asked me to massage her back for her. I washed her hair for her, but it didn’t want it put up today, so I just picked it for her, and fanned it out on her pillow to dry.

At eight o’clock she was taken off the ventilator and her speech valve was inserted over the tracheostomy to allow her to speak. From then on it was pretty much non-stop. She got into the cardiac recliner at about nine-thirty. She was SO tired, and her muscles were sore and needed massaged, pretty much constantly. She needed ice melted on her forehead and cheeks. She needed ice chips. She needed decaf coffee . . . . oops! She can’t have decaf coffee.

Well, that started a conversation among the nurses and the nurse supervisor, Kelley, who asked her what else she liked to drink, Lea mentioned her favorite soft drink. Kelley told her she could have some, but only as much as could be soaked into one foam dauber at a time. We normally use the daubers for cleaning her mouth and tongue, so they aren’t very big. Well, Lea was elated, and I was sent off to the cafeteria to get a soft drink for her. A few minutes later she was savoring the flavor and fizz of a cola. There was rolling of the eyes toward heaven and “Umms” enough for everyone. 

Moments after completing the first little pill container full of cola, the therapists came in to do the swallow test. They inserted a camera through the nose into the throat, stopping just above the vocal cords, where they could observe how well matter was swallowed. They gave her lovely blue applesauce to see how she did trying to swallow it, they blue thickened apple juice, blue regular apple juice, then bread dipped in blue applesauce.

She handled the applesauce and thickened apple juice just fine, but the thinner apple juice went down into the lungs as well as the stomach, and she had problems swallowing the bread. So, she was put on a diet of whatever she wants, as long as it is the consistency of puree. So, a little before one o’clock her first food in three months arrived (see attached photo if you don’t remember what hospital food looks like [not you, Joe!])

She ate about one whole tablespoon of food, but had tastes of mashed potatoes and beef with gravy, green beans and fruit cocktail (all the consistency of baby food). She also had several teaspoons of thickened orange juice. Then she had an upset stomach. It probably took about half and hour to get over the nausea with the help of some medication, but she was fine after that. In fact, Dr. Mah came in to check her abdominal drain, and she asked him if she could have some yogurt. He told her that he would get some ordered for her right away.

When it arrived, she had several spoon fulls of plain vanilla yogurt, and you would think from the eyes rolling up to heaven, and the “Ummms” that she had never had anything so good!  She only had a few teaspoons full but handled the yogurt just fine. Then she heard someone mention that they have ginger ale, and she just HAD to have some of that. I sounded SO good! So, I mixed some with a thickener and spoon fed it to her. And, I guess from her reaction, it WAS really good. (CUE: Roll eyes toward heaven, say, Ummm!) 

Do you realize how much fun it is to put happy faces in an update? !! Thank you, God!

We have had some pretty funny times too, as she is still coming back to reality from some drug induced place she has been for so long, and she still has some hallucinations. She told my brother David this afternoon that the reason she was so worn out is because she spent the whole night up on the next floor handing out five big bags of candy. And, she had five more to hand out in the trunk of her Mercury parked outside. But, she was just too tired to pass any more out today!

She also made phone calls to her sister, her mother-in-law, and to our friend Joe Stroup, who was paddled back into sinus rhythm yesterday. We had planned to call our youngest son after work hours, but he called us first, so she got to talk to him as well. We plan to talk to our other son, daughter-in-law and the granddaughters tomorrow. She usually has the speech valve in for eight or nine hours, and she may go longer tomorrow if she has the stamina. She is very weak, however, and tires quickly.

She still isn’t able to hold the phone by herself, so she needs assistance with taking calls, and it is pretty cumbersome since the person holding the phone for her can’t hear the conversation. She is working on regaining strength in her arm and legs, but it is going to take time. We are working, however, on building some strength, both in legs and arms, through exercises we are doing together.

Dr. Mah says that we may want to step up the physical therapy sessions to help her regain some of her strength, because he thinks we will be ready to do the skin graft next Thursday. He also thinks she will be able to get off the ventilator by next Friday, and have the tracheostomy replaced with a simple small plug in her throat, which will be reduced in size until the trachea is ready to close up. The remaining scar will be about the size of a pencil eraser.

Meanwhile, David and I are splitting shifts, attempting to have someone with her whenever she is awake. We will continue this support until she is able to fend for herself. I can’t imagine anything worse than being in bed, seemingly (or, actually) paralyzed, and have your mind running wild with all types of imaginings and fears. We will continue support for her as long as she needs it.

Thank you for your wonderful notes of love and support for her in the past few days. They have meant so much to her in realizing that there are folks who care for her outside of those thirty or forty brand new friends she just met this past week at Hartford Hospital. As nice as they are, it’s nice to know that there are others, too.

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