Day 5: Sunrise over Boston

Friday, September 14, 2007 - I'm laying here on a cot in Madeline's room, waiting for her to wake up. She had a pretty good night last night (not counting the usual blood pressure and temp checks every 4 hours, and the IV bag changes at what seem like random times). We had a 6:00 am blood draw (she LOVES that) and saw a very pretty sunrise from her 18th floor room... luckily she mostly stayed asleep.

Last night was my first night spent sleeping in Mady's room at the hospital. After three straight nights here, Chris is getting a well-deserved night at home with Julia and the cats. Spending the night here is important to us and to Madeline, but it means getting sleep in short doses... it seems that something always starts beeping every couple of hours: Her IV pumps beep when a bag is empty or a dosage complete; The IV pumps beep if a slight crimp in her line is blocking the flow to her arm; The IV pumps beep if someone (usually me) forgot to plug them back into the AC outlet after a bathroom break and the batteries start running low; The telemetry unit beeps if her heartbeat ever goes down below 49 beats per minute for a few seconds (which it often does when she's sleeping); The telemetry unit beeps if her oxygen sensor comes a little loose from her toe; The telemetry unit beeps if any of the three wires comes loose from the contacts; For a while, the nurse call unit would beep randomly (but they fixed that)... You get the idea. Mady rarely wakes from the beeps, thank goodness, but parents are genetically wired to be incapable of sleeping through them.

The nurses here at MGH are wonderful. They are loving and caring and they treat us like we are the only patients here. We know that Mady is fortunate to be here at the world's epicenter of medical and cancer research and care.