This is one of the final pics we took of Kate, while still in her second hospital. To me, she looks tired...tired of working so hard to breathe, nevermind eat. You can see she has an o/g tube and tape in place on her cheeks for the O2 cannula. Yup, by this time we knew it was time to go...onward and upward...to the best Children's hospital in the country. At least that's what the magazines all told us. Kate left for CHOP the night of October 23, 2006. B and I followed the next day. We assumed she would be a candidate for a tongue/lip adhesion and once she was recovered from that, we wanted to bring her back to hospital #2. It was 25 minutes from our house and sons, versus the 2 + hours CHOP was. So, with a tremendous amount of hope, we followed our youngest child to Philadelphia & checked into the Ronald McDonald House fully expecting to be home with the boys for Halloween. That didn't happen.
Within 24 hours of her arrival, we met with a plastic surgeon who scheduled Kate for a tongue/lip adhesion that Thursday. Dr. Richard Kirschner did the surgery on Kate, and apparently it went beautifully although Kate looked a tiny bit worse for the wear following it. She was kept completely still, in a medically induced paralyzed state that was torture to watch. Her tiny body puffed up from all the drugs, she was pale and most importantly she was on a ventilator. They kept her this way over that weekend, discontinuing the drugs Sunday afternoon, with the intention of her waking by Monday and being taken off the vent. But she had so many meds in her system, it took until Tuesday morning before she was sufficiently awake and breathing over the vent. Halloween morning, my youngest son and I walked into the NICU and saw Kate lying in her bed with no tubes on her face...and breathing on her own. I felt a tremendous relief. She appeared to be taking well to the procedure and it appeared to be working.
By Friday, Kate was still doing well. I was annoyed by now they wouldn't let us try to feed her, but I was just getting used to the slow gears of a major children's hospital...no one does anything without consulting the entire team. So it wasn't as simple as getting me a bottle with some formula. Dr. Kirschner had assured us we'd be able to feed her as soon as she woke up. That didn't happen, but here she is, post tongue/lip adhesion day 7 and looking ok. The next day, I left to come home for a few days and pick up our oldest boys. Our youngest was already with us, a concession to the grandparents when we realized we'd be here much longer than expected. Our older 2 hadn't met Kate yet, and at this point we thought she was in the clear. By the time we arrived, Kate was on a downward spiral she wouldn't recover from. She was stridorous and retracting and turning frightening shades of gray and blue. Again, lots more confering amongst the team which by this point included Dr. Ian Jacobs, the pediatric airway specialist. He performed a bronchoscopy on her, determined the buttons from the tongue/lip were too big and occluding her airway and sent her back to her room on O2 cannulas. More waiting, more discussion, more drugs and then they told me this:
"Mrs. _____ we think there is an 80/20 chance Kate will need to be trached. 80% she won't, 20% she will."
I held onto the that 80%, all the while watching my daughter grow more and more weary. The only place she was comfortable and stable was in my arms, but even I recognized the futility of that. There was no way I could keep her in my arms this way at home, though if anyone had given us that choice, I guarantee we'd have taken it. I'd already been in Philadelphia for 3 weeks, B had long since returned to home and work and I was needing a resolution to all this. Kate was 6 weeks old and we were no closer to bringing her home now than we were on day of life 1. It was time to get moving.
All that resolve meant absolutely nothing when they made the decision to trach her and asked for my permission. I cried buckets in the NICU. How could I do it? How could I not? B. and I consulted the plastic surgeon about a jaw distraction. CHOP would not do it on her, said she was too young. We got online and learned just how much our lives would change with a trached and "medically fragile" child. We agonized, but everytime we saw her struggling we had to wonder what damage this was doing to her. Ultimately, the choice was clear. I signed the consent, and Kate was trached on November 16, 2006. She was 7 weeks old. When Dr. Jacobs came to show me the pictures from the bronch he did that day, her tongue was almost 100% occluding her airway.
This is the first picture we took of her, post tracheotomy. To my eyes, she finally looks somewhat healthy. Still has the feeding tube, but more on that later. Much more. The plastic thing jutting from her neck is an HME. Essentially, that's an artificial nose, providing the heat and moisture she couldn't get from just a simple opening in her neck. I guess this is about a week, maybe 10 days after she got the trach. She recovered from the placement in record time, breathing over the ventilator and getting off the machine completely within days. I didn't realize it at the time, but some kids take weeks, months, even longer to be able to wear an HME. Kate was lucky and it made life a lot easier, since she was much more portable this way, rather than attached to a humidification system 24 hrs a day. She was stellar. The only thing worth noting was her breathing rate was much faster than a "typical" infant her age. She was tachypnic from the trach, but she was breathing and that's all we cared about. Now we could take her home.
It took another 3 weeks for that to finally happen. Turns out, again, it wasn't just about putting the trach in and sending her home. B and I had to learn how to take care of her, had to alert our insurance carrier to this new development, and we had to find nursing care for Kate...all while watching her, now able to breathe, get stronger each and every day.