Today is A's 5th birthday. Happy Birthday to my sweet girl! She spent the day in the hospital, although she is doing so much better. Yesterday she went into the O.R. and they extubated her.....and today they moved her from ICU into a step-down unit. No more ventilator, no more oxygen, and no more IV (except for meds). She is now eating full meals and drinking. The only thing is that she still has her chest tubes, which will hopefully come out tomorrow. Once they come out, and she does well (meaning no more lungs collapsing!) she can come home within a day or two, or at least that's what I've been told.
The odd thing is that when they moved us into the step-down room, I recognized it immediately. WE ARE IN THE EXACT SAME ROOM WE WERE IN 5 YEARS AGO, WHEN SHE GOT HER TRACHEOSTOMY! We spent 3 long weeks in this room, post-surgery, learning how to care for her trach: suction it, clean it, change it, etc. This particular unit used to be the trach/airway ward....now that ward is on a different floor, and this ward is being used for step-down, so with all the rooms we could have possibly gotten (Children's Hospital is a big place!) I am convinced we are in this room for a reason. We've come full circle.
I don't think I've ever explained why A had a trach in the first place. She was born (5 years ago today!) with a gajillion medical issues. One of the biggest ones was that she had a vascular ring, which essentially was a blood vessel coming from her heart that was wrapped around her trachea and espophagus. This had lots of bad effects. For one, she couldn't eat, so she lost almost a pound in the first 48 hours of her life (this is what started her stay in the NICU). When she was 10 days old, she had surgery to correct it, but the area where the blood vessel had been wrapped her trachea hadn't properly developed; it was floppy, not rigid, and kept collapsing in on itself. This made it difficult for her to eat, even though now her esophagus wasn't being squeezed, because her breathing was so labored (with a horrific stridor) that she never got the hang of sucking, breathing and eating at the same time. (Eventually we gave up on the idea of feeding her orally, and although she had been using an NG tube (feeding tube down her nose) we had a g-tube (feeding tube in her belly) surgically inserted a few months later. As my loyal readers know, she is now an eating and drinking champ and in fact had the g-tube removed last summer!
But the trach was a harder decision to come to. All throughout her 12 week NICU stay, her breathing was horrible, and it continued to be so after we finally brought her home. Her stridor was so loud that we were literally able to hear her breathing if she was upstairs and we were downstairs. Her oxygen levels were fine (we came home with a monitor) but she was so LOUD! Her pulmonologist kept recommending a trach, but we just didn't think she needed one.
When we'd had A home for 7 weeks (she was 4 months old at this point) she was re-hospitialized because a surgery she'd previously had to help with reflux (a Nissen fundoplication) had come undone and needed to be redone. While in the ICU post-surgery, the nurses were very concerned with her breathing. I mean, it was LOUD. Everyone tried to convince us to get a trachestomy, but we wouldn't hear of it.
Finally, another meeting with A's pulmonologist changed my mind. He pointed out two things, both of which were very valid and very scary. One, she wasn't developing. She was 4 months old and not even holding her head up. She wasn't gaining weight, despite the fact that all of her nutrients were being directly pumped into her stomach. Every calorie she was given was going straight to breathing. The doctor convinced me that a trach would make it easier for her to breathe, and allow her to thrive in ways she wasn't yet. Two, he had a valid concern that should she get sick, even a common cold, her airway was so narrow that it would collapse on itself and she could die; we wouldn't even be able to do CPR if God-forbid we needed it, as there would be no airway. A worst-case scenario would be her getting an emergency tracheostomy by an EMT in an ambulance.
I was finally convinced. It wasn't what I WANTED to do---who'd want to do an elective tracheostomy on their infant daughter?--but it was what NEEDED to be done. I feel, in that moment, I truly became a mother, even though I'd been a mother for 2 1/2 years already. I was ready to give up convenience and gain a lot of hassle in order for my daughter to live and thrive. It was the most painful decision I ever made, and undoubtedly the most unselfish.
So, she had the trachestomy. I sobbed the night before, taking pictures of her neck that I knew would never look the same. We were told she'd have the trach for 1-2 years (in fact, she had it for almost 4 years) and I wanted to remember how her bare neck looked. After the surgery, we came back to the trach ward, to this very room in which I am now typing, where we lived for the next 3 weeks, learning how to care for it.
We missed a lot of things during the time she had her trach. Because the trach was a direct opening to the lungs, water was our enemy. She's never been in a pool, a shower, or a filled bathtub. She didn't go to the beach (too much sand that could get in her trach) until it was removed last summer. I tried to make the best of it. I used to dye her trach ties (the fabric ties that wrapped around her neck to hold the in the trach) with RIT dye; she NEVER had a white tie, instead having purple, green, blue, and many shades of pink to choose from. But I always wanted the trach OUT. And last year, it was.
Now the stoma, or hole in her neck, is closed. And even though we had an unfortunate complication from the surgery, I am so happy. We made it. She's alive, and she's thriving---the two reasons we got the trach in the first place. In fact, she began to thrive right after she got the trach, and we knew immediately we had made the right decision. And being back in this very room is a fitting end to this chapter of A's life.
The art of the deal: special needs child version
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