While Kate was in the hospital, I focused all my energy on getting her home. After she was trached, when I thought I realized what I was in for, I took classes and learned what I needed to all in the mistaken belief that somehow, all would be normal at home. As I've said before, I was very wrong. Not only was Kate not in the perfect pink room I decorated for her, not only was she forced to live in what was formerly a toyroom, not only was she trached and had a feeding tube...she came with another unknown...the private duty nurse. Cause ya know...we couldn't take care of her ourselves. I remember really thinking we would not need the nursing, or want the nursing after we got settled. Clearly, I had never done this exactly this way before, but I'd done it 3 times before and the boys survived just fine. Again, like so many times during this journey, I was sorely mistaken. The insurance company agreed to pay for 16hrs per day, everyday, of private duty nursing. B researched, and we hired the agency who promised us a nurse with experience in the care of an infant with a trach. The afternoon we came home with Kate, S. met us at the house for the first time. We both liked her immediately, and counted our blessings that she seemed nice and easy to get along with. Ultimately, she and I became friends, doing a 'dance' in perfect unison, taking care of my daughter. She ended up working at our house 6 days a week, for the entire 18 mos that Kate was trached.
Fumbling through life with a technology dependent child is like walking through a fog...every so often there are pockets of vision, where everything seems clear, only to be shrouded in a muddy blur the next instant. We did our best, that's all we could do. While a 'typical' child has only 1 doctor, Kate had 3 from the start: pediatrician, plastic surgeon and ENT. Within a month of coming home, we visited a cardiologist to make sure Kate's PDA had closed (it had), and an opthalmologist to check her vision. I also contacted Early Intervention for an evaluation. Kate was diagnosed with hypotonia or low-tone. Essentially, that means that while she isn't 'floppy' (a really really bad thing for an infant which can indicate brain damage), she wasn't as strong as a typical baby. That plus the airway issues that kept her hospitalized for 80 days qualified Kate for physical therapy 2 times a week. A week after that came through, I harassed the EI coordinator to approve speech therapy as well. They denied at first, claiming Kate wouldn't be missing milestones at this point because of her young age. I countered with, she needed all the help she could get. The trach, plus having a cleft palate, put her a deficit in comparison with typical kids, and why should she be even further behind?? They agreed and speech therapy started several months later.
Starting out, Kate was at least 3-6 mos behind in her milestones. I didn't even realize what low tone was, nevermind how it could affect her in so many ways, including eating. She looked normal, seemed normal to us. But we deferred, as we would so many more times, to the higher ups and a physical therapist came to our house 2 times a week. Kate started to get stronger almost right away. Her legs were her strongest area, her upper torso her weakest. With time, she met all the appropriate milestones. I remember the day she finally rolled over. S. and I were so excited we almost squealed! Kate was 7mos old.
Keeping Kate well that first year proved to be a challenge. She qualified for Synagis shots once a month, to try and prevent RSV. We forced our boys and everyone who came into the house to wash up and use Purell religiously before touching her. If you were sick, you couldn't visit. Again, I remember not realizing how awful her being sick could be, but I deferred and we all "Purelled" the life out of our hands. All the nurses who came to work in our house, complimented us on keeping her well...no small feat in a house with 3 school age boys. Early that spring, all that good luck came back to bite us in the butt. Most of the month of April, Kate was sick with "respiratory infections", colds and the like. Her nose didn't run, but her trach would pour secretions, she have a bad cough, maybe a fever, lower sats and higher heart rates and breathing rates. The antibiotics were doled out like candy. We just couldn't get her well. Mid month, we consulted with a pulmonologist. At this point we were thinking maybe it was allergies. He told me it might be, but his suspicion was that once she was decannulated, all these issues would likely go away...that infections just went to her lungs because of the trach. I hoped, and I hung on that word...decannulation.
Unfortunately, after tons of running around, Kate was admitted through the ER, to a local hospital...who promptly said they wouldn't take her because of the trach. So off we went to yet another hospital, with a PICU (Pediatric Intensive Care Unit), more antibiotics, more xrays, more docs in the loop. She stayed for 3 days, improved and was sent home. Less than 24 hours later, we called 911 because she was lethargic and unresponsive. She'd had persistent diarrhea that day, downed an entire bottle of formula (absolutely unheard of for Kate) and then just passed out. Turns out she had c diff, a fungal infection of her intestines, caused by all those antibiotics running roughshod over the flora in her belly. She recovered nicely, we learned a few things about dehydration, antibiotics and PICUs.
So that makes the count 5 docs, 2 therapists, and nursing 16 hrs a day. Yep, it sure did take a village.