His Last Week

Friday, September 9, 2016 - Ian had a good day. He did not eat at all, it was not that alarming to us as he had days before that he went without eating. Becca had a meltdown that night. We did a lot of talking about things she still wanted to do with him. She said that she wanted to go see a movie, to have a private viewing like we did with Finding Dory. Becca also said she wanted to have a lazy day, where we just watched movies and ate whatever we wanted, just the 4 of us. We told her we would do our best to see what we could do. In addition, she told us that this was the end, she just knew it. It was her twintuition, as she called it...we told her there was no way to know that at this point. He has had other days when he didn't eat and we would just continue to monitor him.

Saturday, September 10, 2016 - I don't remember much from this day except that Ian didn't eat again. He was still drinking, he was alert and engaged in activities.  I sent a message to our Chai Lifeline friend, Tzvi, regarding the movie, knowing he would get the message after Shabbat was over.

Sunday, September 11, 2016 - Tzvi came to visit and we talked about the movies. Becca decided she wanted to see Pete's Dragon. Tzvi was on it and in touch with the theater. Ian still didn't eat anything but was still alert and engaged. He was not really sleeping any more than his usual. After going back and forth with Tzvi, and finding out Pete's Dragon would be leaving the theater on Friday, me being nurse on Monday and Becca not having school on Monday, we would go see the movie at 10am. We also decided that my mom would go with us.

Monday, September 12, 2016 - I was nurse this day. We went to see Pete's Dragon. Ian was alert and seemed to enjoy it. I did try to feed him some popcorn but he turned it down. It was now becoming a little alarming since he had not eaten anything since Friday. I decided it was time to get in touch with Gilchrist and let them know about his lack of eating. 

Tuesday, September 13, 2016 - The day started off normal, Becca went to school, Brian and I went to work. Ian's main nurse was with him. I was at work for about 2 hours when I decided I needed to be home and visit with the hospice nurse when she came to see him around noon. When I left work I told them I didn't know when I would be back. We were now going on day 4 of Ian not eating, not even a bite of food. I got home about 20 minutes before the nurse got there and Ian's home and hospital teacher was leaving. She said that he did well, seemed engaged. Erin, Ian's hospice nurse, came, we sat in the living room for about 20 minutes and chatted about him. To be honest I don't remember most of the conversation. We then went upstairs to Ian's room so she could do her assessment. He was a little out of it, more looking through you then at you. Erin and I then went back downstairs to the living room and had another conversation. I remember some of the conversation but what really sticks out to me is that it was a 180 from the one we had before she went to see him. During this visit I asked her if she thought we were at the beginning of the end and she said yes. I think in my heart I already knew it. I called Brian while she was still here so what she was telling me she could tell him, I knew I would not remember everything. After we got off the phone, Brian decided to come home from work so we could talk with Becca when she got home from school. This is also the point that Brian and I both decided we would be working from home until the end. Brian got home from work and we held each other, I don't remember what else we did, if we cried, said anything to each other. It was also at this time we sent out messages to immediate family concerning Ian's new status and where Erin felt we were. Becca sent me a text message around 2:30 saying that she did not want to come home. I reassured her that he was ok, Mommy and Daddy were both home and we would see her soon. She wanted to know why we were both not at work, and I told her we would talk when she got home. We knew we were in for a hard conversation...Becca got home around 2:45 and sat down at the kitchen table. We told her that Ian had indeed taken a turn for the worse and we were not sure how things were going to go, Erin did not like the way he was looking. We told Becca that Mommy and Daddy were going to be working from home for the next few days but she would go to school, that when the time was right we would let her stay home. At some point and time later that day, Danny called to check in and see what was going on (good news travels fast and he had heard from Tzvi). I told him Ian had not eaten since Friday. He asked if he needed to come say good-bye, my response, yes. Danny asked, do I need to come in town tonight or can I wait until tomorrow, my response, you can wait until tomorrow. OK he said, I'll be in touch once I am in town. I put something on the blog regarding Ian's lack of eating. We had gotten a few phone calls and some people came to visit that afternoon and evening, I don't remember who. Ian was still smiling and some what alert but was sleeping more as the day went on. He was still looking through you instead of at you. Around 6pm, we received a call from Dr. H (Ian's hospice MD). We spoke about the day and what she thought was going on based on Erin's assessment. We spoke a little bit about the end and what we wanted, at that point we wanted Ian transferred to Gilchrist inpatient to pass away. Dr. H said she would be out later in the day on Wednesday, most likely after 4pm. Rabbi Miller, Chai Lifeline, came out to visit and see us. He said some prayers for Ian. We went to sleep not knowing what the next day would bring.

Wednesday, September 14, 2016 - We got up early to get Becca off to school and checked on Ian. According to the night nurse, he had a good night. I remember being in some what of a fog that day. Ian was not eating and his drinking had reduced drastically. Ian still had school that morning and according to his teacher and nurse, he was some what engaged. His teacher was due to come back on Friday and when she left I told her to make sure to text me or call me before coming out. His nurse was by his side all day, trying to get him to drink or eat but he refused both. I know looking at him from Tuesday till Wednesday, he had taken a turn but I can't explain how or exactly what I was seeing. Hazzan Perlman, came to visit and said some wonderful words as well as a prayer for Ian. His words were calming for Brian. My parents came out pretty early in the day and stayed to visit as much as Ian would tolerate. Our social worker and the Chaplin from Gilchrist came out to visit and see Ian. During their visit, Dr. H came out. She assessed Ian and then we sat down to have a conversation....as conversations had gone over the past 2 days it was not easy. She explained to us what she was seeing, from what she could tell Ian's body was beginning to shut down. I remember asking...how long she thought we had left, given what she has seen from other patients. Her response was...when you see a person's decline over months, you have months; when you see a person's decline over weeks, you have weeks; and when you see a person's decline over days, you have days. My reply, so you are saying we have days. She said yes. We continued to discuss getting Ian moved to Gilchrist inpatient...just as we were starting this, Erin walked in. Dr. H and Erin, felt that transferring Ian was not in his best interest, they were afraid the transport would be too much for Ian and he would not survive it. In addition, it would add extra stress for all of us and they didn't think that would be any good. So Brian and I decided we would put on our big boy and big girl pants and deal with Ian staying home. We discussed what we would do regarding the vent when Ian became unresponsive, if there was a heartbeat and if there wasn't one. We trying to cover most of the situations and what we would do so it was not a blind decision. Becca got home from school and we filled her in with what was going on...as best as we could. We sent out another message to immediate family as well as updated the blog. As the day and evening progressed, Ian would sleep more and was looking through you more, his cluck was extremely weak and he was using his eyes to answer yes and no questions. I do remember some people who came to say good-bye....Danny, Jared, Aunt Susan, Aunt Leslie, Uncle Lou, Uncle David, Erika, Leslie, Evan and Jodi. I am not sure who else may have come but do know that at the end of the evening, it was alot and we had decided that Thursday was going to just be our family of 4...after everyone was gone and Becca was in bed, before the night nurse got there at 10, Brian and I went to talk with Ian. What I remember was us asking Ian if he was ready to go to Heaven, he blinked his eyes yes (normally he would say no or I'm not sure). We told him it was okay for him to go when he was ready, he would always be able to see us and know how we were doing...we would be ok as we would always have him in our hearts, so while he would not be with us physically he would still be with us. We kissed him lots, and told him we loved him. Gave report to his night nurse and went to bed not knowing what we would wake up to.

Thursday, September 15, 2016 5:30am the nurse knocked on our bedroom door saying he just didn't look right. Brian got up to go check it out. He came back in to let me know that Ian was unresponsive. Time for me to get up and go in...I went into Ian's room with Brian and he tried the rubbing on his chest to see if stimuli would do anything...nothing, unresponsive. So I called Gilchrist and left a message for the on-call kids nurse to give me a call. 5:45am I woke Becca up to let her know that Ian was unresponsive and before people started coming over she should go talk to him and let him know how much she loved him. Erin called me back and asked if we were ready for them to come over and take care of the vent, I told her yes (not sure I was but Ian was doing this all on his terms).  Then came the call to the Ian's grandparents to let them know that he was unresponsive. Nana and Pop (my parents) said they would be right over. Nana and Pop-Pop (Brian's parents) skyped with Ian. In addition, do did Brian's brothers, they wanted to say their good-byes. My sister also came over. Waiting for the hospice team to get to the house seemed like forever, reality, it was probably 45 minutes. Erin was the first to arrive, with Dr. H and another MD right behind. We talked for a little bit, they did an assessment. At this time, I would say it was 6:40, we let the night nurse go home, we hugged her and thanked her...she had been with us for over a year. We all took a little bit of time with Ian to say good bye and remind him how much we loved him as well as telling him to run and not to stop. Once everyone had a chance to say what they wanted to we all gathered around him. Brian and I each holding his hands, I looked up at the MD and shook my head, giving him the ok to turn of the vent. Within minutes of the vent being turned off, I asked Erin to please listen....she said he has passed, time of death 7:00am.