But a year ago this wasn't such a happy time. A year ago we were preparing for a trip of a different kind. When I left the hospital in December for the 8 millionth time that year my daughter came home with an ng tube, was 19 pounds, small, weak, and sick. And I was defeated. I had finally (sensibly according to the doctors) given in to a g-tube. I was applauded for making my daughter's life and world a better place, but all I felt like was a big failure. I had failed my child. All the years of being a teacher and nanny I prided myself on getting even the toughest kid to eat. I was able to coax food down any child. But my own daughter baffled and confounded me.
So I packed for the hospital dutifully in February. I cried for days. Even though my special needs mom's group was cheering me on I knew that I was taking this journey alone. I felt isolated, numb, and my stomach hurt non stop. I kissed my little girl's smooth tummy and packed her up.
When we got to the hospital her room was ready, toys were laid out on the bed. We were checked in and cheerful nurses set us up. I started to cry and the head nurse told me that it would be OK and hugged me hard. I felt a little better.
That didn't last long. The surgeon came in a little later and once again we had a fight about a nissen. A nissen is often given with a g-tube surgery. But we didn't need one. Cary Lynn has rumination syndrome and a nissen is about the worst thing you can do for that. I tried patiently explaining that to them once again and pointing out I was rather stressed so I really didn't want to argue. The doctor gave up and told me that I would be sorry about it later when she had to have surgery again. At that point I assured him she wouldn't have surgery AT ALL if he didn't back off.
Then his nurse came in. My daughter's procedure was supposed to happen that morning. They kept taking her off the schedule and putting in more "urgent" children. My daughter could not eat or drink and by now was screaming from hunger and boredom. The nurse insisted she was my new BFF and could hook me up with anything. She then showed me in two minutes everything. I begged her to come back after the surgery because my child was screaming, I was stressed, and she didn't even have the tube in yet so I had no idea!! She said she would.
Finally at 5pm we went in. The whole thing took 20 minutes once she was prepped.
Everyone oohed and ahhed at the beautiful work that was done. All I wanted to do was throw up and cry, in that order. They cut my perfect child open, stuck a piece of plastic attached with nothing but a balloon and expected me to be thrilled. Well pardon me for not jumping on the party wagon.
It went from bad to worse. The next day they go to send us home and I say, no. No one has shown us how to use the tube or care for it! The floor nurses say its my BFF's job. Guess what? She decided that it wasn't so there was a huge fight over who was supposed to do it. My husband got involved and finally I got another 2 minute lesson on it and a promise of a visiting nurse. Thank God for You Tube and my attendant. I didn't have a clue.
So we went home. I would love to say it got better but it really didn't. But we adapted. Thanks to the visiting nurse and my attendant and a friend I called who taught me about venting I learned. \ Slowly and reluctantly. The BFF nurse was a little mad that I wans't willing to change the tube, didn't want to see the hole, and touched the area as little as possible. The more they got preachy the more I dug my heels in. I think I cried more over this than anything that Cary Lynn had gone through.
Slowly things got better. I started cautiously looking at the area, touching it. I realized my child was not going to blow up when I came near her tube. She also was able to eat better. Because she could eat more she grew. My little 2 foot 19 pound bean is now 3 feet 1 inch and 26 pounds. I also realized that our life didn't revolve around eating. She ate every three hours and it took about 30 minutes. That's all we did. Now she still takes some food orally but we now eat 3 meals and two snacks and it takes 15 minutes tops. That's more time to enjoy life. I don't feel chained to the kitchen. I bolus her nice nutritional meals since now her variety is expanded and she tubes everything from broccoli to hot dogs(Ok so the hot dogs don't count but she loves them! I swear I feed her extra veggies with it!)!
I also fired my bff nurse and crew. I replaced them with a more sensible team. The last straw was when I found out they gave her the wrong size and type of tube. We had a huge Mickey. We now have a smaller Mini. Her stomach has stopped pouring acid onto her skin and her granulation tissue is all gone. I have to travel to Norfolk to see them, but it's worth it!
I also found the humor in it. We named her IV pole Stanley, decorated him, and he has starred in my Facebook page. When my daughter does crunches and manged to hose the cat straight out of the tube feed I couldn't stop laughing. Even when I was cleaning it off of the ceiling. Moments that remind me that it does get better and that we can get back up when we are knocked down.
The best part was is that we have not had an extended hospital stay since the tube. When she is sick, I keep her at home cause I know I can get fluids and food in. I am soooo happy to stay away from our local hospitals.
I've also gotten braver. A week or so ago I installed my first tube. Something I vowed I'd never do. I really wanted to get her new smaller tube in so I bravely did it. I also looked at her hole. It wasn't awful, it was just a hole. I popped the new tube in, filled the balloon with water and realized that the world did not come to an end:). I also realized that I can do this. This was the last barrier for me.
Now would I do it again? Surprisingly, yes. My daughter needed this surgery. Now mind you I may have had it done someplace else, but I would have done it. She has been better off with the tube. I don't always love it, but I'm happy my child can be healthy and well with it. Let's just say I'm at peace with it.
And frankly, it's better to be at peace. Because it's not going away. People "graduate" tubes all the time. For Cary Lynn and most children like her even though it's not impossible, it's highly unlikely that it will go away. But I'm OK with that as well. She needs to be healthy and strong. This gives her the ability to do it.
The journeys we make aren't always easy, but they shape us. We can either become weaker or stronger. My daughter is a fighter. She chooses strength. So do I.
