Moving From The Hospital to “Suitable Housing”: Out Of The Pan…
I was to be transferred to a nursing home on July 18th for “sub-acute” care where I would not get much therapy but where I would stay until I could begin outpatient therapy. My primary nurse told my mom that this would not be a good place for me and to do anything she could to find us a place to stay so I could be released to my mom’s care. My mom begged Dr. Greenwald for more time to find an apartment for us. She had been staying at a boarding house on the other side of Central Park from the hospital for several weeks. The only other option besides a nursing home was for her to find “suitable housing” that was safe, secure and handicap accessible for a short term stay, that would allow me to receive visiting nursing, and rehab care, plus I required lots of medical equipment to manage my breathing and feeding issues. She started looking for places for us to stay immediately.
Unbeknownst to me, after I had the tracheostomy, the plan was to wait for tests to be done to see if they could re-section my trachea (remove the part that was scarred and occluded my airway). I remember Dr Kenneth Altman (the doctor who performed my tracheostomy 3 weeks earlier) came to see me in my hospital bed one morning. It was before my mother arrived at the hospital. He scoped my throat to check its condition and to measure the actual size of the stenosis now that my throat wasn’t so inflamed. He told me that the size of the stenosis left barely enough room to be able to resection it; the scar was about two and a half inches. He said he’d approve surgery and pass on a referral to their top doc who performed this surgery, but that there was no hurry; he was thinking late autumn.
My time at Mount Sinai in inpatient was running out and I still had a tracheostomy and was breathing and eating through a tube. My mom kept me in the dark about the fact that there was a possibility that the stenosis was too big to perform a successful tracheal resection. I didn’t realize that there was a possibility that they wouldn’t be able to do it. If it was unable to be performed, I would have to breathe through a tube and unable to speak for the rest of my life, even with a voice box, because the amount of scar tissue in my throat prevented enough air to reach my vocal cords and produce sound. They also weren’t having much success with me being able to swallow food, so I may have also been on a permanent feeding tube.
When my mom arrived, I wrote the news to her. She broke into tears. She knew all along that I may never talk or breathe through my mouth or nose again, and had spared me the scare and took it all upon herself. She was protecting me from being overwhelmed with hopelessness. I was in my wheelchair when I told her that they were gonna do it, and she broke into tears. I wheeled myself close to her and made a feeble attempt at a hug. I am so lucky to have such an incredible mother!
My mom’s best friend, Anna, who was present at my birth, and a whose whole family was a powerfully wonderful influence throughout my life, drew on all of her professional contacts and friends and through their compassion and benevolence, was able to secure a corporate apartment in Manhattan on Park Avenue for one month. My mom got news of this 15 minutes after she got the news that the tracheal resection was possible… It was a good day. We could have use of the apartment starting July 26th, so she told Dr Greenwald the news and asked him to let me stay until July 27th. He agreed. Thank you Dr Greenwald
The conditions of staying at the apartment were that we would need to vacate if there were corporate guests coming for a few days, but my mom figured that we’d just take it day by day: the same way we had gotten accustomed to taking everything associated with my accident. I never thought I’d live on Park Avenue. Even for a few months. But I did… under awful circumstances, but I did. Thank you Anna, Kim Girard, and John Paget. I hope we meet someday, Kim.
My mom was able to talk the ENT doctor into performing the surgery 2 months earlier than they were planning as my mom needed to be home. She had been in New York for months already and wanted to take me to Texas, but did not want to do so until I had this surgery. They scheduled the tracheal resection for August 10th, 2011 instead of October. A tracheal resection is a very major surgery in which the patient (me) is put under and a surgeon cuts into the neck and then carefully cuts through the trachea on either side of the stenosis and then removes the occluded section of the trachea. This is a surgery where its very easy to damage the vocal cords. The surgeon then sews the two ends of the trachea together and discards the part of the trachea that is occluded. They were going to slit my throat to save my life. Ironic, isn’t it.
My mother did everything. She’s amazing. She collected all of my things and moved them to the apartment on July 26th, got all the medical equipment delivered and set up (oxygen tanks, tracheal humidifier for nighttime, nebulizer (for twice a day treatments), tracheal cleaning kits (also twice a day), bath bench, feeding formulas, syringes, distilled water and saline solutions, pulse oxygen monitor, walker, wheelchair, etc). She also got a bunch of real food to cook and puree and feed me through the tube instead of that horrible “Boost” or “Jevity” formula That I had been on for months. Also, her sister, who is a functional medicine practitioner, had sent a lot of nutraceutical formulas based on research for the best things I should be feeding my brain. Now I could get them into my system! At Mt Sinai, I wasn’t allowed any such thing. Don’t even get me started on hospital nutrition.