Back From The Hospital Again - Part 2

"After that I was moved up to the 10th floor (10D room72)."

My RNs on the Neuro floor were WONDERFUL! By sheer coincidence one of my nurses was the daughter of a friend, which was nice and she was even thoghtful enough to ask if I felt comfortable with her being my nurse. Another of my RNs went and got me soup from the Au Bon Pain restaurant located on the first floor of the hospital when once again the cafeteria food that I had ordered for my dinner was wrong (hard carrot sticks & celery, turkey sandwich with hard bulky roll, etc that I couldn't eat instead of the mac & cheese and custard ordered). That soup tasted SO-O-O good and I can't believe she used her own $$ to buy it for me, since I hadn't thought to bring any money with me when I was admitted first at Jordan hospital and then transferred to Brigham & Woman's.

The Doctors (actually interns) checking in on me each morning were brusque and couldn't figure out what was going on. I was getting a bit depressed, but at least I had a good roommate and her family was very nice and we chatted a bit. Then she left to go home and I got another roommate who was delirious and ended up running through the halls at 2am naked screaming "HELP!". It took 8 security guards to bring her back to bed and tie her down with restraints. That sure was interesting, to say the least! It didn't help my state of mind however, since I got almost no sleep that night.

Sunday Sept 17 my Mom was able to come visit me and it was good to see someone I knew after spending 5 days in the hospital where the only person familiar to me was Colin, the nurse who I had during my first hospital stay. I was relating everything that had happened during the past few days to my Mom and feeling a bit sorry for myself when my bedside phone rang and it was an angel sent to me in the disguise of Neva Ganun, a Gordon Setter owner who I had only emailed with once or twice through a Setters email list. Neva had gone through a number of medical events in her life and I guess she noticed how I sounded. After hearing just a short bit of why I was feeling so down she said she was going to make another phone call but would be calling me back shotly. When Neva called me back a few minutes later it was to let me know that she had called the Patient Care Coordinator at the hospital and someone was on their way to see me. I was a bit embarressed, but will be ever thankful to both Neva and her husband Sandy (who suggested she call the Patient Care Coodinator)for their thoughtfulness in calling on my behalf! Within minutes a white haired woman in a white medical coat, with a clipboard in her hands came and wanted to know everything. My Mom and I filled her in on everything including the lack of care that I seemed to be getting and she wrote it all down asking a number of questions. I made sure to express that my nurses (RNs) were all wonderful, my problem was with the rest of the staff. Within minutes of the Patient Care Coordinator leaving my room I recieved a correct meal (first one in 5 days even though I would faithfully fill out my menus each day with what I wanted and could eat). Within 10 minutes I had a resident NeuroSurgeon (Dr John Mislow, MD PHD) who came in to check on me. Dr Mislow actually sat down on the bed and examined me! He said he thought he knew what the problem was...in about .5-1% of all patients who have my kind of surgery the nerve endings from the 5th & 7th cranial nerves become inflamed. One goes to my jaw and the other my gums, amongst other places (I can't remember right now which nerve goes to which place, sorry). This was why all my gums were inflammed, swollen, and downright painful and I could only open my mouth about 1/4" by now! Imagine when you are at a dentist and they hit a nerve, then imagine each of those nerve endings being inflamed...that is what I had going on in my mouth (OUCH!). Dr Mislow told me that the good news is that there was a drug made for diabetic patients with painful nerve endings that also would work in my case, and it had no side-effects...the bad news is that it takes 4 to 6 weeks to completely work. I was so relieved to know that there was a reason for what was going on and to actually have someone who listened to what I was saying and was personable enough to sit down, examine me, and explain everything. He even waited as I wrote in my book and helped with the spelling of a few words.

About an hour later a different resident NeuroSurgeon came in to see me and explained the course of action to get me feeling better a bit further. She asked if I felt comfortable enough to go home and I said "YES!". I didn't need to see my roommate running the halls naked again for a second night in a row (somehow she was able to get out of her restraints several times already). I went home with perscriptions for the new drug that would help my gums, Lirica, and several muscle relaxers for my jaw tightness, and lots of info on what I was supposed to do, when to take the pills, etc. I was released Sunday evening and my Mom drove me to my Grandmother Kelsey's house where I stayed for a week. I enjoyed being able to walk down to the beach each day, but I longed to go home. Finally on Tuesday Oct 3 I came back home :-) Even if the place needs a good cleaning since I've been away for almost 2 months it was WONDERFUL to see all my Gordon Setter kids!!!

I've been at home for a week now and slowly with the help of Frank's good friend, Gary LeBlanc we have been trying to get the place back to normal. I wish I could hire Gary as a housecleaner - he is Great! Gary also is the person who helped Frank out with taking care of the dogs. We owe him a BIG favor someday!

Sorry it took me so long to post this Part 2 of my most recent complications. My gums are about 85% better now and I can actually chew some food, and my mouth now opens just over an inch! I just wish they had found the sinus infection too while I was there so it didn't have to get so bad, but now that I'm on antibiotics (which I asked for from the beginning) I'm doing a whole bunch better :-)

Sue