Today’s schedule was much more relaxing. I awoke from my nap early and got straight to work; my night’s sleep consists of a series of naps. I managed to accomplish a great deal before Raquel arrived. Josee-Marie showed up soon after and we had a long session together. She is truly my savior; she is one of the kindest, wisest women on the earth. She answered all of my questions in great depth and assured me over and over again that I am doing all the right things.

I admitted that I feel responsible for the bed sore on his ankle, but she explained that it is very tiny and easy to fix. She bandaged it up and promised it would disappear by next week. She adjusted the entire medication schedule so I would not have to feed Gilly in his sleep. He really does eat an awful lot when he’s awake, so he is well nourished. She called the pharmacy and checked on her instructions to ensure they were safe.

After examining Gilly for congestion she determined that he is completely clear and the sound of his breathing is normal under the circumstances. She agreed that he should sleep in a slightly elevated position and went on to recommend that I place him on his side, and turn him every few hours. She insisted that I get more sleep and that I not concern myself with waiting exactly two hours to turn him during the night, but that I do the best I can. She was very firm about this instruction and warned me that although I promised to listen to her, she doubts I will. She emphasized how important it is to sleep. I cannot disagree, but my mind says otherwise when I get into bed.

She made a call to Francine Venne, the palliative care nurse, Dr. Lapointe’s angel, and asked her to have Dr. Lapointe order medication from one of 3 special pharmacies. At first, when I heard who she asked to speak to, I panicked, thinking she was going to order Gilly’s admittance to hospital. She picked up on my worried expression and assured me that it is my choice; I determine when the situation is not manageable. She explained that she called francine Venne to request the prescription for medication that could be administered by injection. It is complicated to get a doctor to prescribe exactly what she may need over the holidays. She said that there are 3 types of injections that Gilly may require; one for pain, one to treat congestion and another to keep him calm (she couldn’t provide the correct translation for the third one, but this is what I understood from her description), all of course only if necessary.

She looked deeply into my eyes and gently asked if I still feel comfortable handling the situation at home. I immediately answered affirmatively, but questioned if she believes he is safe. I went on to share how I feel; as long as he seems to know and appreciate his surroundings, and responds positively to people, he would probably be best in our home where we can provide a warm and loving atmosphere 24 / 7. When it is not longer safe or in his best interest to be here, then we will have to consider an alternative. She reminded me that he has a bed waiting for him at Mount Sinai. I gulped, containing the wail that wanted to be released from my body, and informed her that we have not yet heard from them; Dr. Lapointe had mentioned that they would contact us to arrange pre-admission. She assured me that she has documents that state that he has been assigned a bed there already. I couldn’t hold myself back any longer. I apologized and took a moment to express my sadness openly. She understood and left me be for a moment to check on Gilly, then returned and asked me if I was O.K.

I questioned her as to what she would do in my situation. She guaranteed me that Gilly is safe in our home. She understands my decision, and plans to arrange for more coverage. She expects to have a nurse come in 7 days a week pretty soon and strongly advised me not to hesitate to call the office at any time to ask questions. She will also arrange for the preposee to visit more than 3 times a week. All this will kick in after the weekend, due to the holiday. She assured me that I can have a nurse come to the house at the drop of a hat if I feel the need, no matter what day or time and not to hold back just because it is holiday time. She promised to change her schedule for the following week to prevent overlap with the CLSC nurse, Cathy. We parted ways, yet I still feel her support from afar.

Raquel has very little to do since Gilly sleeps so much, so she does some odd tasks around the house and provides comforting encouragement to me while she waits and allows him his rest. I sometimes feel that setting certain hours for any long term period is arbitrary, and it doesn’t always coincide with the actual ‘major muscle moments’ when I require help. It’s impossible to parachute care givers in and out whenever I need them, but I can dream, can’t I? She’s a pleasure to have around regardless, so I’ll take what I’m given and say thanks to the medical system.

Nadette dropped by this afternoon (see photo above). She is an old friend who moved to the states and was in town for the day. We were both delighted to see her. Gilly munched on the delicious candy she presented to him; I haven’t seen him eat that much candy ever before. He savoured every bite and remained awake and alert for the entire hour or so that she spent with us.

Gilly had a nap and then a huge dinner before drifting back to sleep. Tamara came by with Leora, so I was saved the job of transferring Gilly back to bed. He’s tucked in and sleeping peacefully with apparent contentment, so I’m off to bed. He’ll need to be turned in a few hours (I wish we had a device like a rotisserie), but by then I may have Yaron home to assist me.