Love at first bite

The arm is slightly improved, so I will post today. Maybe I’ll have to revert to every second day or so, though, because I was told to give it a rest. The pain killers and anti-inflammatory medication are working, but not enough to really resume activities completely, and I need to reserve for what needs to be done.

Thursday evening started off with a visit from Steven (actually he was around afternoon as well, but I was at work). There was very little response from Gilly until later in the evening when Steven entered his visual field. He clearly exclaimed, “Oh my God.”

At approximately 2:00 A.M. Yaron noticed that Gilly’s leg was shaking uncontrollably. He had a 40 second bout of shaking that very morning when Cathy the nurse was here providing a training session for Elise. She said it was a small seizure and to track the occurrence if it happens again. It didn’t stop, so I called the all night medical hot line for the very first time. A nurse arrived at 2:30 or so, and by 4:30 Gilly had received new medication (by courier from the Gare Medicale’s main office out east somewhere) and he was fast asleep. The seizures had stopped.

On Friday, Golda Tradunski from the Mount Sinai Hospital (who I renamed Dr. Ruth, explaining it’s the image her name brought forth in my mind, only to be shattered by the realist; she’s young and ever so sweet) spent four hours here with her nurse, Judith, equally lovely. Dr. Golda readjusted all the medication and clarified many questions for me. She has officially taken over Gilly’s case, so if he needs to see a physician for any reason, she will come to the house.

Josee-Marie caught wind of Gilly’s seizures, and so she too made a visit while Dr. Golda was here. She insisted, even though I assured her we were being well taken care of. She was so desperate to come that I acquiesced, and so began the debates on medical practice. I let them thrash it out, but I had mentioned to the Mount Sinai team that the protocol differences between the CLSC and D’Entraide is confusing; I do not know who to listen to. They both stood their ground and helped Josee-Marie compromise so that I could be the recipient of one order of instructions as opposed to two. This in and of itself was exceptionally helpful.

He had a few mild, short lived seizures while the Mount Sinai team was around, but nothing to write home about. The change in medication obviously helped. I was uptight about potential seizures for the remainder of the weekend, especially since I was to be gone for much of it. I felt very strongly about attending Noam’s Bar Mitzvah, and I’m glad that my reservations did not prevent me from taking part in most of it. He was fine, and in safe hands with Elise, Tina, Marvin, Sharon and Rosanne (not all at once of course). We are so very fortunate to have such amazingly kind and dedicated friends in our lives. Words cannot fully express how thankful we are to these angels.

Gilly has moved onto another chapter; he sleeps pretty much always, but with his eyes kind of opened. He responds very rarely to people in an external way, but I am certain he feels the presence of the loving people who have paid him a visit in the recent past. Many family members have taken the time to pay a short visit, since they are in town for the Bar Mitzvah. I sincerely believe he knows that they have visited, even though he did not greet them in any way.

He still eats and drinks, but getting the liquid up through the straw is arduous at this point. We use foam tipped sticks and small spoonfuls to hydrate him. Last night he chewed off the foam from the stick and wouldn’t open his mouth for me to retrieve it. He bites hard, let me tell you! I finally managed to pry his mouth open and get it out, but it took me quite some time and I was in a sweat by the end; what a tense struggle that was.

All medication is now taken in liquid form, which makes it much easier, but it was a challenge finding the pharmacy that could prepare the suspension. We’re still waiting on one type of medication, but luckily it is not as crucial as the others. Hopefully by tomorrow the pharmacist will have found the best recipe. I’m learning so much through this experience.

Gilly continues to appear as if he is free of pain or any sort of discomfort. I can only hope and pray that his peaceful existence persists, but if not we are poised to provide pain killers of the highest order.

I will sign off, because John and Stacey are on their way.