Another day

I stayed a  hotel last night with my parents.  They had this planned for sometime  before this ever happened.  They are going to be their all week long and it is right by the conference center, so it is right down the street from the hospital.

Kirk said she had another rough night.  She was very anxious and she wanted water all night long.  When I arrived she was sitting up in the chair.  She was talking and wanting her speech evaluation.  When the speech therapist comes in they have to make sure that they can swallow before they clear them to eat.

Kirk said that they did a echo to see if she had a hole in heart.  I guess if she had a hole in the heart that would be a reason that she would have the bright spots in her mri.  That came back negative.  She was very anxious to get the speech evaluation done.

The speech therapist came and gave her two bites of jello, two bites of graham cracker and some water.  She then evaluated her.  When they evaluate they ask a bunch of questions.  One of the questions was telling her 5 words and she had to repeat them back to her.  She repeated them back to her perfectly.  She told her to remember those words and she would ask her to give them back to her later.  She then finished the other questions.  She then asked her to repeat the words.  I could not remember them.  She then said do you want a hint.  Alyssa said yes.  When she gave her hints she got the words right.  She was cleared her to eat.

She wanted to eat but the nurse said that we had to do one more test.  She had to swallow her pills.  The nurse came in and gave her a pill.  She took the pill and drank one glass of water with it, they gave her another pill and she drank another glass of water.  The nurse asked her if she was having a hard time swallowing and she look him in the eye and said no I am just thirsty.  When he came with the 3rd pill her eyes got really big and said I get to have another pill and he said you get 2 more.  She said cook I get to have one water.

She was clear to eat so we got want she wanted from the menu.  I called down and the cafeteria said that the nurse need to call down to say what kind of diet she was on.  I asked the nurse about it and she said that she needed to wait until she got her spinal tap done.  She was very anxious about eating all day.  I felt so bad for her.

She had a busy day talking to all sort of doctors trying figure out what is going on with her brain.  She talked to speech therapy, infectious disease, neurologist, leukemia, lung specialist.  She has hot spots on her brain and they are trying to figure it out.  They did a echo on her heart and that was negative.  They did a eeg or ekg and it is showing there is still small brain seizures going on. 


She was still very anxious about food.  We finally went down to have the spinal tap.  Her breathing was kind of sketchy.  She did fine for the spinal tap but when they put her back on her bed she coughed up blood.  We ran back to the room to get her back on the pressurized mask.  It was pretty scary for awhile.  She was finally resting comfortably for a  couple of hours.  I went to dinner with my mom and my dad watched her.  When we came back she had spit up blood again.  They had to put the feeding tube back in.  The nurse and I finally got her comfortable after about 3 hours.  She has her meds in her right now.  Cross your fingers that she can stay comfortable and she can get a good night's rest.


PS Thanks Brenda for coming up and letting me go to lunch.  It was very nice to leave for a minute or two.  Thanks again for everything that is being done in Alyssa's half.  Kirk & Kelsey are leaving for Omaha tomorrow morning.  She loves to hear the comments.  I read them to her when she is feeling good it brightens her day.