It started out frustrating because bad weather (that wasn't very bad at all!) was going to keep the nursing agency representative from being able to do our intake. The hospital wouldn't let Abby go home without nursing care, so this would have made us stay at least another day. Several phone calls from a very angry husband later, she agreed that she would "try" to get down there. (The weather was fine!! Kids didn't even go in late!!)
Once we realized that this was actually happening, it became surreal. We hugged and cried tears of joy because we were finally doing something that most of the doctors didn't think would happen. As we walked out of the hospital, I almost felt like we were stealing her and someone was going to take us down the moment we stepped out of the door!
Thankfulness overtook us as we pulled out of the parking lot with "Our God" blaring. Absolute thankfulness.
I think the terror started to set in right about when we left the city limits. We'd been trained extensively in her care and the equipment, but all of that kind of went out the window when the apnea monitor first beeped and I couldn't get it to stop! What in the world have we done?! Why did they let us leave the hospital?!
Along with the fear came the doubt. I distinctly remember sitting on the floor trying to put away some of the mountain of medical supplies, just sobbing because I didn't think that I could do this. It wasn't that I didn't want to--it was that I just doubted myself. Would I be able to handle a true emergency? (I'd find out just a week later that yes, I could!) For quite sometime, I wouldn't even allow myself to be alone with her. I always had to have someone else in the house with me in case something happened.
I don't think I slept at all that night. Yes, we had nursing, but my many nursing interviews had already informed me that you can't necessarily trust them. Just because they have credentials doesn't mean they are truly competent. (We sure did learn that in our year and a half with home care!!!)
Do I still have frustrations? Oh, of course! Doctors don't return phone calls, our supply company sends the wrong items, appointments get canceled, etc. It happens.
Is it still surreal? Sometimes! When I think back to all we have been through in the last two years, it certainly is. Sometimes I think I'm just peeking in on someone else's life!
Am I still thankful? Every single moment. Even when Abby spits her food at me and I have to change my outfit for the third time that day.
Am I still terrified? I don't think that it's as terrifying anymore. I still struggle with the fear of the unknown, but being trach-free also means that Abby is not nearly as susceptible to germs and illnesses. The fear of infection was the worst because we knew that a common cold could kill her--and nearly did. I am learning to not fear the worst every time she gets an illness, now that I've seen that she can handle it without being hospitalized. Probably my biggest fear these days is when she will need to be intubated for the first time under anesthesia. Because of her tiny airway, she can't be intubated like most people. Abby has to have fiberoptic intubation, which only specially-trained anesthesiologists can do. This will require some planning to coordinate the appropriate anesthesiologist, the surgeon performing the surgery, and our ENT, who wants to be there for the first surgery...just in case. One of the pluses of a trach was knowing that she had a stable airway for surgery. Needless to say, I'll be a nervous wreck the first time she goes under!
Do I still doubt myself? I think I've become a lot more confident in myself since I've had Abby. I have researched, studied, observed, and performed so many medical tasks that I feel like I can handle most situations. I certainly don't know everything, but I know Abby. Most of the doctors have come to respect my opinion and include me in their decisions because they know that I am knowledgeable. A little doubt is healthy--overconfidence leads to mistakes. But I think the crippling doubt that I had before that could have kept me from acting quickly is mostly gone.
Two years. Two years since she's been home. Two years since my daughter truly became my own. SO thankful!!