Saturday, March 15, 2008

Going deep into unfamiliar territory

Since our last post a few days ago, we find ourselves on an even more difficult journey. John's speech has gotten even more slurred, coordination of legs and hands more difficult, and brain going through changes that make it hard for him to understand others and be understood himself. On top of that, John has a very painful bladder condition (they think it is a BK virus common to immune-suppressed folks but tests are pending) and he has had to take strong narcotic pain medications after sometimes moaning and shaking in pain. There have been small blood clots passing in the urine. Most of the time, however, the pain medicine is working and he is more comfortable physically. The dilemma for the doctors is to avoid over-medicating his brain--They want to wake up the cells!

Adding to all of that have been some safety issues for John. We had been asking for some "sitters" for John in the room, even while I was there (I am here probably 18-20 hours a day). On Tuesday a.m, I went downstairs for coffee after telling the nurse (one who had been adamant that we need no sitters) that I'd be back in 15 minutes and asking her to make sure to check on him. When I came back 15 minutes later, I found him on the floor, having fallen trying to get to the bathroom. Luckily there were no injuries that showed up in the x-rays and John seemed ok afterwards.

John completed two more hyperbaric treatments for a total of three, after taking 2 days off to have a bronchoscopy and tubes placed in his ears. He is scheduled to have a total of 40-60 treatments, 5 per week, over 8-12 weeks. For as long as we're in Houston, we have hired a person named Luis to accompany him to the hyperbaric treatments; counting the round-trip ambulance ride to Hermann two blocks away and some wait time, the whole treatment process takes up 5 hours each weekday. So far, John has seen no results from the treatments, but we were asked to wait 8 weeks before assessing anything.

John had really enjoyed some wonderful visits this week (and so have I)! On Tuesday, Linda Ferreira-Buckley and Tom Buckley from UT spent the afternoon and evening here, capping it off with taking me to dinner at Prego in Rice Village and getting John take home pasta, chicken marsala, and panna cotta for dessert. Shawn Henry, accessibility colleague John has worked with at many conferences, came here to visit on her way from SXSW and brought the special gift of audio clips from many of John's friends and colleagues who were at the conference. How touching to hear their voices missing and loving John so much!! What a thoughtful, creative gift.

Thursday's visits were amazing as well. Diane Colvard and Jack McKinney brought Dillon for a visit with John in the hospital lobby and, were joined by former UT colleague and Guide Dogs for the Blind boardie Morgan Watkins, his golden retriever guide dog Will, and son Richard who just happened to be visiting the same day! What a beautiful sight to behold--the two dogs curled up together between John and Morgan in arm chairs. (We'll have to share the photos soon!) Also delightful were the loud exclamations from hospital staff members who knew Dillon: "Dillon, it's Dillon!" from bone marrow biopsy technicians, people from the rehab floor, and others who knew Dillon. Diane Colvard has been an amazing angel for Dillon--feeding him gourmet meals that cater to his whims (and he's a bit picky these days), carefully and caringly giving him pain meds (which she has to pick up frequently from the vet and then administer every 4 -8 hours of her life), and staying on the lookout for other health issues.

Sadly, my brother in law's father died Wednesday and Patti and Dennis had to come back, along with my niece Rebecca. It has been great to see them and others in their family and network of Houston friends, some of these being connections from Bellaire High School days long ago. Patti, an RN and staunch advocate for all things John and Anna, happened to be available to join me for a "care conference" meeting the nurses had called for the purpose of coordinating John's care, now that he's been here a while and there are many medical issues involved. After the meeting in which Patti and I spoke up about our need for more resources for John, sitters have magically appeared on all shifts to help with John's care.

Tears come to my eyes as I contemplate the guardian angels who have stepped in and provided special support at just the right time. Thank you Arcadia, Steve and Helen Schoonover, Sharron Rush, Loretta Guarino-Reid, and Kathy Keller.

Sharron asked that I post the following:
Many of you have been asking about how to help John and Anna through this very difficult time. It is especially frustrating for those who are far away and cannot visit. So we have set up the Friendship Fund for anyone who wouldlike to help our friends offset some of their expenses and the loss of income caused by so much time away from work. Here's how you can donate to the Fund through Paypal:
1. Go to
2. Choose the "Send Money" tab
3. When prompted for an email address, use Anna's
IF YOU HAVE A PAYPAL ACCOUNT:you will go through the familiar series of screens. There is an optionto leave a message, please do so with the subject Friendship Fund.IF YOU DO NOT HAVE A PAYPAL ACCOUNT:You may follow the prompts and enter credit card information. At theend of the process, you will then have a Paypal account.
IF YOU DO NOT WISH TO USE PAYPAL:Another option is to send a check directly to Anna at their home address:Anna Carroll405 W. 35th StAustin Tx 78705
Much love to this wonderful circle of friends.

Ditto--Much much love to this wonderful wonderful circle of friends. You are all grounding this big tent. Anna and John


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