Thursday, August 7, 2008

Out of the NICU and into the fire

While Kate was at CHOP, my youngest son and I lived at the Ronald McDonald House. I remember our first night there, when we thought it would only be a few days, looking around at the faces of people who had clearly been there longer. Honestly, any parent who comes to PRMH, thinks it's only going to be a few days, but in actuality, it turns out to be much longer. CHOP is a great hospital, but in an effort to be completely thorough, things seem to drag on and on. I spent many nights in the kitchen, with other mothers of sick kids, wondering when we'd get to go home. Any child's discharge, and their parents getting to check out of the house, was a thrill for all of us, because it meant that someday, we too could leave. That December, Kate's brother was chosen to flip the switch on the thousands of lights the house puts up for the Christmas holiday. B. was asked to say a few words about Kate and he did us all proud, there wasn't a dry eye in the house...especially my son's, since he developed a full blown fear of Ronald McDonald!

Once Kate's trach was placed, we moved fast to get her home. It was important to me that she and I be home, for good, by Christmas. We'd spent 4 weeks already away from home and it was getting hard on everyone. B. and I made our intentions known to the most important part of the hospital team...the nurses. They'd seen the toll this was taking on our family, the constant traveling back and forth for B, the tedium of all day hospital stays for my son and they knew we had 2 others at home as well. We were lucky that Kate had nurses who cared about her and who wanted her to be with her family. They pushed through classes for us, designated "training times" where there weren't any, allowed us to combine trach changes, so we'd both get credit for doing them...all the while making sure we were 100% comfortable with caring for Kate. At one point, the NICU was just about ready to kick Kate out because she finally didn't require a high level of care anymore. As good as that sounds, it terrified us, because we were used to the NICU. Plain and simple, I'd spent enough time with these people, and they with me, that I felt paralyzed at the thought of being without them...and with Kate, alone on another floor. That, plus the NICU attending had already said they would discharge us in a week. The nursing staff made sure she went to a unit equipped to deal with a trached baby. So on 12/11/06, Kate was transfered to the Progressive Care Unit, to prep for transition to home care. Here's Kate and I, the evening she was brought there. My thoughts that night were a jumble of anxiety, fear, and genuine nervousness...we were actually close to bringing her home, for the very first time.

Progessive Care ended up being the best thing for Kate and I. I sent my son home that final week, so I could concentrate on taking care of Kate, and take care I did. I was in the hospital from 9-5 everyday and I stayed in her room, doing everything for her the entire time. By the time B came for our mandatory 24 hour stay, I was more than ready and more than confident we could take care of her at home. (Every parent of a newly trached child must stay with them in the hospital prior to discharge and care for them for 24 hrs to prove they can do it.) See her here, so big and healthy looking. She was a dream. As soon as the trach was placed, she was a different baby and she started to develop by leaps and bounds. We even caught her smiling a few times, which thrilled me to bits. I couldn't wait to bring her home and finally be normal.

Kate was scheduled for discharge the week of 12/21, but an attending in the PCU took up her cause, and was determined she go home. He wouldn't take no for an answer and he didn't want to hear lame excuses. During rounds one morning, he told the team, "I'm interested in what's best for the patient, not your rules and procedures, and what's best for this patient is to be home and that's what we're going to do." And he did. Kate was discharged from CHOP after spending 80 days in 3 different hospitals. She was 11 weeks old and weighed 10lbs 6oz. To say it was a journey is putting it mildly. Here's Kate, on her second day home, 12/20/06.

Normal, of course, was now far from what I'd expected when I gave birth to Kate. Normal was now a strict routine of feeding, meds, breathing treatments, suctioning. Kate required constant care, and needed to be supervised 24 hours a day. A child with an artificial airway is a lot of work, and it quickly became apparent that although Kate was now home, things would never be as they are with a typical infant. I knew in my head they wouldn't be, but I guess in my heart I was still harboring some hope that it would be different for us. I naively listened and believed when nurses and doctors told us, "oh when you get home, she'll eat for you, things could be different." I'm here to tell you that's a load of crap. Once a feeding tube is inserted, it's extremely difficult to get out, and though I didn't know it at the time, the feeding tube would prove to be a far greater challenge for us than the trach ever would.

No comments: