1.) Things began to change in July 2013. I was at my mother’s house, Beckett became limp, breathing heavily. We left via ambulance, were transferred to Boston Children’s in a helicopter. Beckett’s ammonia was over 1,000 (normal/baseline for Beckett would be under 20).
2.) Beckett was sedated, a catheter was placed in his neck and emergency hemodialysis was started to clean the ammonia that had built up in his bloodstream. We spent a few weeks in recovery and then were discharged home. Doctors chalked it up to dehydration, the week of our admission is had been extremely hot outside.
3.) In December, again Beckett fell sick. Mid-afternoon, I couldn’t wake him from his nap. Ben went in the ambulance to Boston. Beckett needed emergency hemodialysis and we spent the three weeks before Christmas living at the hospital.
4.) March 2014, Beckett was admitted to the ICU with the same high ammonia levels.
5.) June 2014, another scare but nothing too serious. Beckett was discharged after a couple of days.
6.) July 2014, Beckett wound up in the ICU again. This time Clementine followed shortly after him. This was her first admission, but it occurred at the exact same age as Beckett the year prior.
7.) The end of August 2014, after a weekend at our favorite summer camp Beckett was admitted to the hospital and Clementine a few days later.
8.) We went into the hospital in August hopeful for a new solution or plan to help combat this disease, but by mid-September something had changed. Beckett and Clementine’s blood work was out of control, and no amount of medication tinkering was helping to reign it in.
9.) Beckett became septic for a second time in his life. Ben and I sat in another conference room, where a doctor I am so grateful for told us “You can hold him as he passes peacefully or we can perform surgery and he can go down in a blaze of glory”. Ben and I opted for surgery to remove the infected port, but we agreed lay down our fight after that.
10.) Beckett pulled through surgery and we met with PACT (Palliative Care Team) the next morning. We began discussing what it would look like for us to go home on “hospice” care. It wasn’t quite hospice because we gave medications (including a Bi-Carb drip) and continued with feeding, but the agreement was that if either of them fell into crisis, we would administer pain medication only.
11.) I had applied to Make-A-Wish earlier in August because Beckett now qualified, they called in September and I tearfully explained our circumstances. Within two days, our wish grantor was at our home helping us plan our trip.
12.) We were discharged on October 5th (I think), we had made a list of priorities coming home: we wanted Beckett to start preschool and have his school photos taken, Clementine needed her first haircut, we wanted family photos taken, and we wanted to go on our first family vacation to Disney World.
13. Clementine passed away on October 14, 2014 around 9:30 in the morning. Ben and I realized what was happening just in time to get Jules and Wilbur out the door. We dressed her in her prettiest polka-dot pajamas and rocked her in our bed as she slipped away.
14.) Ben and I decided to continue on our trip to Disney World, we left three days after Minnie died. We had originally planned to drive an RV to Florida because of all the medication and equipment, but changed our plans and flew down instead.
15.) Disney was hard and beautiful. Jules had an amazing time, Beckett however was dying. His hair was brittle and falling out, the heat was too much for him during the day, i’m not really sure how much he experienced in the most magical place on earth.
16.) Beckett started preschool on October 28th, we only went to school maybe half a dozen times. He was often too sick or tired, but the days he went were so wonderful for him. The other kids loved on him so much, he was able to get his school photos taken and he made some Christmas ornaments that we will treasure forever.
17.) The last few weeks we stayed home most of the time, it was easier to give care to Beckett and the slow pace helped us really cherish our time together.
18.) Beckett began dying on Friday December 12th, he lasted through the night but by the next morning he was actively dying. For eight hours, I rocked Beckett as he wheezed and whimpered, his breathing slowed and eventually he passed a little before 6pm on October 13, 2014. It was long and hard, he required a lot of pain medication.