Not quite what we expected

Today was a huge day for Clare and exhausting for Kris & me. I knew that many things had the potential to happen this afternoon, so I left work at lunch time and went to Provo. Kris and I talked with Clare and she was very pleasant and responsive. About 3:00pm the speech therapist came in and said that she was going to give her the last Kool-Aid test. Before she did this test she wanted to ask Clare some questions. After passing a lot of single commands, she started giving Clare two commands at the same time and Clare did them very well. Things such as; “Open your mouth and stick out your tongue.” “Point your finger and raise your eyebrows.” “Close your eyes and wrinkle your nose.” “Open your eyes and wrinkle your nose.” “Close your eyes.” “Open your eyes and raise your eye browse.” She did them all perfectly. I was so proud of her.

Then she asked questions which Clare nodded yes or no to. Things like. “Do you have a dog?” “Is his name Billy?” “Is his name Scout?” “Do you know where you are?” “Are you in a hospital?” “Is your name Sara?” “Is your name Clare?” “Are you married?” “Is your husband in the room?” “Is your dad in the room?” “Is it the month of August?” “Is it the month of October?” (I don’t know how she got this right since she has been asleep since August.) Needless to say it was pretty amazing.

The Kool-Aid test was done this way. The respiratory therapist deflated the cuff in her trach so that the air passage is no longer protected. The speech therapist put a piece of ice on a spoon and then covered it with blue Kool-Aid powder and fed it to Clare. Clare would chew the ice and swallow it. The therapist felt Clare’s throat as she swallowed. They did this over and over again. Clare had blue teeth, lips, tongue. . . everything was VERY blue. She also gave her plane ice to eat. Then the respiratory therapist suctioned out her trach. Clare does not like this at all. We are told that it feels like the wind is getting knocked out of you and it hurts. No blue die came out so the respiratory therapist said I will go and get a speaking plug and he left the room. That was at 3:21pm. He returned, pulled out the tube that curved down her airway and put the plug in. If I had known it was that easy I could have done it weeks ago.

We watched Clare as she lay there breathing through her mouth and nose. Not much changed. The speech therapist tried to get Clare to make some ahhh noises but with no success. Clare coughed several times and we could hear her voice in the coughs and a kind of pained whiney sound. When the therapist had tried all she was going to try for the time being, I leaned over Clare and said, “Clare you can talk now, take a big breath and open your mouth and say ahhh.” We did it together and she made a similar sound as I was making, kind of a singing ahhh sound. I said let’s do it again and we took another breath and she made an ahhh sound and it rose in pitch until it sounded like a siren going off. At this point she was looking panicked. The siren continued and she worked herself up.

The stimulation was really getting to her. The new sensation of breathing through her nose and mouth were setting off new connections to her brain and she was VERY confused. She was trying to sit up, throw her leg off the bed; she would punch, hold, push, and squeeze anyone near her. The siren continued to go on and off. She coughed a lot, gagged and was trying to clear this new airway. It got worse. Kris and I traded off holding her and keeping her from ripping off all of her wires and pulling out her trach. She would not keep the oxygen on and for 2 hours we worked her trying to keep her from hurting herself. The nurse gave her more pain, anxiety and nausea medications. After about 2 hours she began to settle down. She was visibly terrified and not happy.

The Doctor came in to visit her. He hears glowing reports of what Clare does every day but every time he visits her she is sleeping or very unresponsive. When he walked into the room, Clare closed her eyes and went to sleep. She would not do anything for him. I don’t know what he did to her to get on her bad side, but she was not going to give him the satisfaction of performing for him. As the doctor was about to leave, I leaned over Clare and asked her to try and make an ahhh sound for us. “The doctor needs to see what you can do so we can get you out of this hospital.” We took a big breath together and she wound up into a siren and began thrashing again. The doctor seemed pleased to see the progress and soon left. He said that if she does well on this speaking plug, then in 48 hours they will take the trachea completely out. That will be so nice for her.

Kris and I talked about how exhausting this afternoon was. It is not unlike what we experienced several weeks ago except that Clare is much more mobile and she now has her own alarm that goes off. We are told that she is processing so many new stimuli that she is overloaded. Hearing her own voice and breathing through a new airway and not being familiar with the feeling of a partially plugged airway is all overwhelming to her. Three hours after the speaking plug was put in, she calmed down and went to sleep. I am sure as she lays there breathing through her new airway; her brain will continue processing this new sensation and remake many associations. Let’s hope that tomorrow she is more comfortable with her new airway and will be able to say what she has been trying to tell us.

There were two words that we heard at the start of one of the sirens. It was “Help me.” The only way Kris and I could keep from crying during this emotionally and physically exhausting time was the joy of knowing that once she passes through this, she will not have to go through it again. Rebooting a brain is hard work and Clare is working very hard at it.