Here is a glimpse:
7:30- Pre-Round evaluation
7:45- Mad dash to the cafeteria to purchase the biggest most caffeinated coffee I could find.
8:20- Pulmonologist arrives to Cohen's room to evaluate and take history. She was the first to comment on Cohen's arm. She also ordered x-rays and blood work.
9;30- Head to the Ronald McDonald House to pick up my two oldest girls to take them to their appointments.
9:50- Arrive back at hospital for the appointments.
11:15- Head to the playroom where the lovely Child Life Specialists have taken our super hero for a little play time.
11:30: Back up to our room where our nurse checked out his arm and requested an evaluation from the VAT team (the IV experts).
11:40- Fortunately, Rounds (the hallway gathering of the medical team where we determine the plan of care for the day) were running behind, so I made it back just in time to participate. I was upset when I thought I would miss it because of the girls appointment. Because of Cohen's history it is so important for me to be there when they decide his plan. A very sweet Child Life Specialist hung out in the room with Cohen and the girls so I could actually hear the plan...lol
11:50- VAT team arrives, measures and evaluates his arm. She was concerned and made the decision to order an ultrasound to determine if the PICC line needed to be pulled and replaced.
12;30- Headed down stairs to get the girls over to their grandmother so that I could get Cohen to
x-ray. Our wonderful nurse went with us so that she could sit with Cohen while I rushed the girls over to the RMH where mamaw was waiting at the side door.
12:45- Wait for x-rays and remember that I was suppose to be in my home health evaluation at 1:00, once again my wonderful nurse stepped in and volunteered to notify her and reschedule it for later in the day.
1:20- Back up to the room when our sweet friend Amy (front desk coordinator for our floor) informed me that several home health people have been calling trying to reach me and that one was suppose to be here at 1:30. That makes 3 different home health people that had been trying to meet with me. Then, Amy sweetly asked me if I had eaten yet today.... hmmm that thought had not yet had a chance to enter my mind. Nor was ordering food a possibility since I apparently had a guest coming to train me on our home pump.
1:30- I was informed that Cohen's ultrasound would be at 2:30 and that a home health nurse would be here at 4:30 for my TPN training.
1:40- A very special girl visited us with a gift that finally broke me to tears, giving me a little Sunshine through the storm.
2:20- Cohen falls asleep... of course, just in time to be woken up again.
2:50- Ultrasound transport arrives. Cohen was rudely awoken with a glucose prick test on his finger and then swept away to ultrasound... my sweet boy just rolled with punches.
4:15- We headed back upstairs. Amy asked again about the status of my food intake, which sadly still had not occurred... however the major headache had arrived.
4:30- Our home health nurse arrived but kept getting important phone calls so our training was became more and more delayed.
5:00- She finally looked at me and said, "You have had a long hard day and you look exhausted, let's just do this tomorrow." I think in that moment I heard angels singing.
5:30- Ordered food!
6:30- Finally, for the first time all day put food in my mouth!!!
7:00- Settled Cohen in with a movie so I could run over to the RMH to give the girls their nightly medicine and give some good night kisses.
8:00- Back to the hospital to give my little superhero his bath and nightly cuddles.
10:00- Finally got him to sleep and yep....you guest it, I CRASHED!