These past couple of days has been difficult in so many fronts, physically, emotionally and psychologically. While the doctors warned us about the challenges this week could bring, until you actually live through them, it is hard to imagine.
Last night, Benny was closely monitored. He B”H was comfortable and rested peacefully.
Today, the goal was to begin the medications early at a slower rate than yesterday and run them over 20 hours. The first few hours, Benny did great. About 4 1/2 hours into the treatment, Benny began coughing; the same cough that triggered yesterday’s nightmare. The team was standing by, ready and waiting to respond if G-D Forbid need be. The nurses have been incredible and extremely supportive, both day and night shift’s. Benny has made quite a name for himself here in the hospital this week. The medication was turned off for several hours and restarted at a lower rate this evening.
This afternoon, the hospital hosted a special event for patients and their mothers in honor of Mother’s Day. This event was coordinated and sponsored by Drew Barrymore. She came to the hospital with a team of makeup artists, hair stylists and manicurists to pamper us and help us forget about our troubles. All of these artists volunteered their entire day and gave their services to bring joy and laughter to the families here at CHLA. Thank you Debbie or was it Debra an extremely talented makeup artist for disappearing the bags under my eyes and most of all, listening to stories about Benny and Zaida Ben of course! Debbie also had a grandfather who lived a very long time; I think she said 102! You gave me and other’s a few minutes of fun and relaxation in not such fun place. After the makeup came the hair. That didn’t last long, because Benny had another coughing episode so I went running to back to the room.
It’s now 12:15 (two hours after I began this post); Benny is still up. HELP!!! He hasn’t slept a wink today. He’s been up since 7, had two temper tantrums, one lasting an hour, several coughing spells and B”H continues to have energy. Every time I think he’s almost sleeping, he pipes up and asks for something like “tie” or “hat.” I haven’t been able to remove his shoes yet or take off his second dress shirt. Benny’s coughing has started up again; the doctor on call has now decided to call it quits on the remainder of medication tonight. The infusion has just been shut off B”H. The coughing continues. I am calling Ari to come back to the hospital now. I can’t do it alone anymore tonight
I don’t know what to ask anymore. Shavous is coming, there must be something but I am clueless…