In the past few days, Jillian has experienced some symptoms that the doctors have addressed and so far found inconsequential.
On Friday morning, her voice would disappear at random moments. This seemed to disappear during the day, so we felt confident in taking her out to the opening of a show of interesting, dramatic photographs by her friend and Goldsmiths classmate, Lia Chavez, on Friday evening. Many of the friends who've surrounded Jilly since the accident also came, and we had a tentative plan to go for dinner afterwards. As we were leaving, however, the voice disappeared, this time for a longer period, and Jilly seemed really tired as well. She and her wise friends agreed it might be better to get back to the hospital. Instead of settling into the big lobby there, we all sat in the chic Bellevue Cafe--where the grilled cheese and french fries are to die for. Jilly enjoyed conversation in this relatively peaceful place among people from different parts of her life.
Saturday, the voice was fading in and out again, but worse than that was the pain she was experiencing in and around the now-vacated PEG site. Although there was no sign of infectionor any other problem, the resident on call decided to consult the specialists in both areas. One of the ENT docs who originally installed the trach came in rather late in the evening. The possible sources of the voice problem are not alarming, so she and Jilly agreed to wait until to have them assessed until Monday morning, when a small probe will be used to explore the area.
Troubleshooting the abdominal pain was more problematic. The docs decided to order a CAT scan of the area, which was not done until quite late in the afternoon and unfortunately involved more pain and discomfort. The Transport staff member who took Jilly to the radiology area and brought her back told her about his life and treatment at Bellevue (he was born there and has been hit by a car four times), distracted her in the process. We haven't heard the results of the scan yet.
Within a few days, we'll be checking Jilly out of the hospital and heading for New Mexico. Just four weeks ago, the odds of this day coming did not look good, but here we are. In so many ways, she is her old self again; what remains is a process of sorting out the mind and strengthening the body. It's a bit unpredictable, too, but all the signs are promising.
Have a great Sunday.
Ingrid
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2 comments:
Dear Ingrid,
I am Rebecca's mom in Virginia and have been reading Jillian's progress each day; thank you for taking the time to write. You ease each mother's worst nightmare by sharing that it is possible to move through such a crisis and survive.
Wanda, who has posted several times and you recall has a daughter who is recovering from a similar injury, was visiting me for a few days here in Lexington. Wanda was my father's (Rebecca's grandfather's) caregiver for the last 5 years of his life. I hope she will continue to be a resource for you when you return home; she is an intuitive person and a real champion for her daughter, as I know you are for Jillian.
As Tiana and Jillian improve and seem more "normal" it may be difficult to remember that there are and will continue to be unknown gaps in their experiential knowledge. Recently Tiana reached bare-handed into a pot of boiling water to retrieve some potatoes she was cooking and the same evening burned herself trying to remove food from the oven without protection. As Wanda related to me, Tiana said something to the effect, "Maybe now my boyfriend will get it that there is something still wrong with me."
I relate this story not to frighten you but to enhance your vigilance once you return home. It will be hard to anticipate and at the same time not hover. My prayers are with you as your journey continues toward a full recovery for Jillian.
Take care of yourself too.
Suanne
I have never been so honored by the presence of a person in my life! Thanks to Jillian for bringing her incredible lucidity to the evening and to her friends for accompanying her! Truly Jillian, your presence made that evening one of the most memorable moments of my life. Jillian I am so proud of you and look forward to celebrating many more milestones with you. I love you so much girl!! Lia
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