Sunday, February 10, 2008

Sunday afternoon

Hi there: It is Sunday, 2:37 pm and John just finished having a breathing treatment. A respiratory therapist comes by about 4 times a day and places a clear plastic mask over his nose and mouth. Running through the mask is a warm cloudy mist of a medicine called xopenex (mixed with ipratropium bromide) that opens the bronchial passages. It lasts for about 7 minutes. Mason and Melissa and I brought John some Japanese rice noodles in a broth and he is now sipping the broth from a coffee cup. But not very much.

John's appetite has been pretty low over the last few days. One explanation given by Dr. Hosing and her team is that he has been on several strong antibiotics for the pneumonia on top of the 6 medicines, including ambisome, that he is taking for the mystery brain lesions. He has also had some lower GI problems, again probably due to the mega doses of medicines. The pneumonia has clinically improved (i.e. his oxygenation is normal now and the cough is looser) even though the CT scan shows bi-laterial (double) pneumonia and they want to follow up with a bronchoscopy to look at the lung fluid (routine procedure in transplant patients). Another symptom is neck pain, somewhat solved with Darvon. Although they can give him narcotics, they prefer to keep him alert, with the brain problems still unsolved.

The best thing about this weekend has been the wonderful visits we received by loving friends and family who have amused John and picked up his spirits. On Friday, dear friends Marianna Adler and Sue Heinzelman (John has known UT colleague Sue for over 30 years and the mult-talented Marianna for around 20) came from Austin and spent the day at the hospital--including meeting all of the doctors--and then took me out to dinner. Mary Alma Welch, a smart, nice, and dog-loving PA and friend stopped by when Sue, Marianna, Mason and I were in the room. We were having a lively chat about Sue's and Mary Alma's dogs when Dr. Forman strode in wearing a larger than usual yellow-with-paisley bowtie and his usually large personality. The six of us created a party-like atmosphere. Later Friday evening Mason's wonderful girlfriend Melissa Craven flew in from San Francisco and has been spending the weekend with us here. She and Mason will be here until they leave to go back to SF Monday evening. On Saturday, we received the gift of a visit from Phil Cherner, a close UMichigan buddy John has known for over 35 years. Phil flew from Denver that day just to visit with John. Amazing.

Another good thing is John's nurse 7am-7pm from Thurs-Tues. Norman, a former English teacher is a world traveler, fan of folk and classical music, and knew all of the details we needed about some Edgar Alan Poe short stories Melissa is considering for her storytelling assignment in graduate school. Norman is very sweet, calm, and respectful with John and takes great care of him.

The hardest things happening remain what we don't know. And John does not really seem a lot better. Maybe not worse, but still having walking and talking problems and some confusion. Thankfully no hallucinations, and no super-low blood pressures or postural hypotensions. The mobility problems seem to be the balance and coordination issues that are related to the cerebellum area of the brain. A few things I've picked up:
-If the problems are caused by a fungal infection, it could take 6-8 weeks to clear in the brain, from when he first started the ambisome
-As infection or cancerous tissue in the brain is clearing/dying, "necrotic tissue" can form and sort of clog up so that the patient may experience worse symptoms before they get better
-The diagnostic brain surgery idea was fully explored and is now off the table and not considered an option by any of the doctors we are seeing here.

What's for tomorrow? 3 tests: 1) Dr. F will do a lumbar puncture (spinal tap) here in the room to gather more spinal fluid for many kinds of lab studies, including some new ideas cooked up by the infectious diseases people. Dr. F has a great touch and doesn't hurt John with these. (I was a bit worried, however, last time he did a puncture on John while his sweet but politcally right wing nurse began chatting about her husband's anti-Hillary views, etc. Before we got into her view of Obama, I guided the discussion elsewhere. Even Dr. F commented after she walked out of the room that he disagreed with her views completely:) 2) bronchoscopy to check out the fluid in the lungs and 3) EEG to look at brain waves. Some results from 1 and 2 and all of the results from 3 will be available soon afterwards, while the remaining conclusions from 1 and 2 will involve up to a week more.

Thank you to so many who have been sending wonderful emails. I read them out loud to John and we consider ourselves so very very fortunate to be held in so much love.

Anna and John


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