Saturday, April 11, 2015

Adventures with Ezra and Easter

On Thursday I had an appointment with a GI specialist for Ezra. It was at a Mesa location for Phoenix Children's and when I drove up I thought "I remember this place!" I hadn't been there since Ezra had his CAT scan when he was four or five months old. I almost thought I dreamed this place, where there is plenty of parking in the front and you can just walk right on in. I have been to many specialist locations, and to the PCH in Phoenix a dozen times and a different Mesa location a handful of times. It was kind of nice to come back to this place, just to know I wasn't crazy and that this building really did exist. Plus, the people were really friendly the first time we were here.

I met a lady in the lobby who was a former nurse and a foster mother to two babies. She had a medical binder as thick as my arm for the boy. He had a different chromosome disorder than Ezra, and she told me he had had open heart surgery. Meeting so many other kids with issues (from all the hospital trips we've had) makes me marvel at the human body, and at the human spirit.

When we finally got into our room, Ezra had a hard time. He is not loving hospitals nowadays. Any place where I have to take his clothes off, where there is crinkly paper on the squishy tables, and where people poke and prod him sends him into a panic. He cries and shuts down. I have to hold him the whole time.

They almost  re-weighed him because he weighed less than their previous records of him. You know, the records they had from over ten months ago. I had to confirm, yes, he does weigh less than when he was four months old.

We finally met the doctor, and she was a no-nonsense business-like woman. She was there to solve our problems. She did no tests, she only asked about his history. She told me I needed to try harder with weaning him, with his eczema, with feeding him more calories. His current therapists weren't right for him, I needed a new and better team of people. I wasn't doing enough. What were my thoughts on the G-tube?

This is why doctor visits stress me out, it's aways like a slap in the face. It's not enough that I put on a song and dance show every time I want Ezra to eat more, that I pretend to be in love with the honey bear so that maybe he will try to drink from it one day. It is not enough that I am still breastfeeding him although I would like to be done so that I can finally start to lose my substantial baby weight (50 pounds isn't a fun amount of extra weight to carry). It is not enough that I schedule for him, even though I am not organized and do not prefer to spend my time driving to appointments. It's not enough that I work with his little body personally every day, knowing which muscles need to exercise. None of it will ever be enough for these doctors, because he still has problems. He still has low tone. He still has intestinal problems. He still isn't crawling. He still is below the weight charts. His head still isn't growing. I feel like I am failing a very important test, and these people are shaking their heads like you should have studied harder, Dummy. I want to yell "The test is rigged! I can't do any better than this! I'm trying my best."

So I told her I'm not opposed to the G-tube, but maybe it might be nice to try the NG-tube first because it is less invasive and doesn't require surgery. And really, could she give me a little bit more time to try to feed him normally? Ezra had lost weight due to a month of sickness, and he was doing so much better. He is never sluggish or dazed-looking, actually he is usually smiling and happy. He is feeding well now, and we started to turn a corner recently, could she please wait?

So now we need to go and get weight checks every two weeks. She gave me a list of people to call and things to get from the drugstore for his skin, for his food, for his colon. And so it goes.

And now for something completely different!

Easter. It happened. I dyed eggs with Asher and Gwen while Dan was gone. Asher says that his favorite color is pink right now, and that is fine by me. We, I mean the Easter Bunny, hid eggs inside because it is already starting to get hot. The Easter Bunny left some baskets for the kids with candy, a book, bubbles, games, and a toy. We watched an epic amount of church on TV. It was a great day.


William said...

I think you are doing a great job with Ezra, Jamie. I'm glad you stuck up for your motherly intuition and told the doctor to wait on the g tube. Billy and I have been talking about doctors and pediatricians a lot lately. For how "smart" they are, they sure are no good about seeing the individual kid for an individual instead of a figure on a chart. It's lame if you ask me. Too many of them stress parents out rather than actually helping them. Hang in there!!!! Ezra is making good strides because of all your hard work and love for him! Love you.

Tracy Mills said...

Jamie, you are great! I'm always praying for cute little Ezra and hoping everything is going well for him and you guys. Oh... and your eggs are great.

Lynette Mills said...

Wish I could have been there when you took Ezra in so that I could vouch for your super mommy skills. But since I'm a white I probably would have just listened and been mad inside. Why do doctors have to be that way? I agree with Lori. They need to be more supportive of the individual family. Glad she at least relented and gave you more time. I also continue to pray for you and Ezra.