Saturday, May 25, 2013

How Do You Do It?

"I don't know how you do it" is a statement I, along with other special needs moms hear pretty often. Some find it offensive and I can see why. It implies we put up with things that we shouldn't have to and that is partially true. We shouldn't have to spend nights in the hospital or watch other kids grow and surpass our own. But I am not offended because those that utter the phrase have positive intent. What I choose to glean from the statement is this:
  • I am an amazing mother who goes above and beyond for my child because I have to, and because I want to
  • I go through more than most mothers but still come out smiling even if life sucks at the moment
  • I show up to work and continue to be productive after sleeping on a hospital couch or better yet, NOT sleeping at all when a normal person drags in a bad mood
  • I drop everything to do what's best for my kid and others notice and appreciate this
  • I have more stamina now to keep chugging along than I had when I was 20, younger, more metabolism, etc. 
I recently told someone I get by on snickers bars and caffeine. That's "how I do it". We all do what it takes to make sure our children get what they need. Now "How do you do it" differs completely from "I could never do what you do". Now THAT is offensive. Because I think anyone could do it. You do what you have to. A tiny human being who needs more than a normal tiny human being has a way of wrapping you around their adorable little fingers and you're stuck for life. Walk across a floor of tacs? Jump through a hoop of fire? Go on two hours of sleep in three days? Why yes, dear, if that's what you need from me to be happy and as healthy as you can be.

The official diagnosis was a UTI, the same one as the last, it never fully went away with her first doses of antibiotic. Apparently the UTI caused vomiting, then the treatment caused nausea, which caused more vomiting.Wednesday, she had another MRI, which showed her ventricles increased. This implied a shunt malfunction. Her neurosurgeon did a shunt tap which showed there was no way it could be pressure in her head. Then as they were resetting her shunt setting, it was discovered that the magnet tool they use to set the shunt was not working! So for a week, her shunt was set at 1, instead of 0.5. It explained the increase in her ventricles and quickly resolved itself once the setting was corrected.

As far as us, we are home for now, and how we do it has gotten easier than the last two weeks! We had the pleasure of sleeping in our own bed last night and hanging out in our lazy day clothes today. Miss Callista was so happy to be home and to sit in her pink chair.  She hasn't had a single breath holding spell since she left the hospital which contributes to my theory that she simply hates it there. We all slept in today, making up for sleepless nights away from home. They gave us a new bag to hang with her feeding to help her get the air out of her tummy. Hopefully we are in for a much more pleasant eating experience. Right now, she is still on slow, continuous feeds and gradually we will work our way back into a normal schedule. She has a nutrition clinic appointment next week to see about what we can do to meet her needs but avoid milk and soy. Other than that, we're just looking forward to our three whole days together.

Also, welcome to all our new readers from Callista's facebook page. We are so happy to have you on our team!

Saturday, May 18, 2013

So Which One are We Choosing??

By "which one?" I mean which diagnosis! Callista has been in the hospital since Monday for vomiting. We took her to the ER on Friday and they did a shunt series and MRI, then sent us home. By Monday, she couldn't keep anything down and it was dehydrating her. In the ER, they insisted again on the shunt being the culprit. It was not. She was admitted and more testing was done throughout the week. For four days straight, if she was awake she was screaming in pain and having breath holding spells one right after another. I think we got maybe 9 hours of sleep total in those four days. She has been through several tests and procedures. Now we are playing the game where we try to see how many diagnosis we can go through.
  1. Shunt-- Nope says Neuro
  2. Kidney infection-- No way says Renal Scan and X-Rays
  3. Shunt (again, seriously?)-- Once again, a big N-O from Neuro
  4. UTI-- Yes actually, but it's still the same one from last time which apparently did not get cleared up.
  5. G-tube ulcer- Scope says no, but there is a lot of irritation in her esophagus and stomach lining.
We are still admitted, I can't wait to see how many more we can add to our list and how many more times "shunt" comes up. To top it off, we were put on the junk floor over in the old part of the hospital. It's not the fact that it's an old room, but more that most of the people over there are clueless. Many of them refuse to listen to us as parents, there is only one space to sleep (one space, two parents, what to do?), and many of the people fluctuate from being TOO attentive and waking her up every five seconds, or not attentive at all, with alarms and beeping driving us nuts for long periods of time. Lucky us, after it was decidedly a GI issue, we got moved to the GI unit. One of our favorite nurses is taking care of her now, and I actually got some sleep. Nothing more exciting than that! It certainly isn't the way I wanted to spend my week or weekend but hopefully we've convinced GI that there's something more going on besides simple reflux.

Sunday, May 12, 2013

Mother's Day Muck

Happy Mother's Day to me... Friday we took Callie in to NCH because she was throwing up everything. They checked her shunt through x-ray and MRI and the results showed stable. By the time we got out, she was doing better. Yesterday she did fine with slower feeds. Today is a different story. Our morning has involved puke, puke, and more puke. She had some coffee ground emesis this morning, so I switched out her formula for pedialyte. Since then we've done much better as long as she doesn't move. Usually when we get the brown yuck it's after she has worn out her esophagus. I'm trying very hard to treat this from home, no one wants another stay in the hospital! Poor kid... Needless to say, our mother's day plans changed! Lucky for us, my daddy has volunteered to be the grill master today and cook out instead of eat out. Let's hope Callista gets over whatever this bug is soon!

Of course, what better day than today to give a shout out to our mommies. Both of our moms have been incredibly supportive of us throughout our lives and especially the last year and a half. We are so lucky to have two great women as influences and cheerleaders.

Some moms have the typical path to follow while others are forced to take a rougher road. But all moms have struggles and hardships and tough decisions to make. We all fight with ourselves about whether or not we chose correctly, did the right thing, are we a good mom? Enjoy the day and each second you have with your children, special needs or not, because that is what being a mom is all about.

Monday, May 6, 2013

Happy Nurses Week!

Since Callie can't say it yet, I will say it for her. Happy Nurses Week to all the nurses that have touched our lives. We had our favorites from the J4 NICU (Thanks Joann and Layla, you rock!!) and we can't forget Sherri and Liz from A2 (love you guys!). We spent almost 3.5 months of Callista's life basically living with the folks on these floors and we couldn't have survived without their humor and love for Miss Callie. We also thank Callie's home nurse, who has been so sweet and kind over the last eight months. We wish you luck as you move on <3 

Mostly, we want to thank our MOST FAVORITE nurse ever, DADDY!!  From diagnosis day until today, it has been such a blessing to have a nurse as a husband and father. He takes such great care of our little bug and helps me wade through the medical jargon and random test results. He is there to keep me from being intimidated and to ask questions I wouldn't think to ask. And of course, he is there to do the gross stuff like IV antibiotics and dressing changes (hehe!!). Our family would not be as strong without this wonderful guy in our lives. We love you!!

Be nice to your nurses this week and every week! They work hard, they work long hours, and they take time away from their family to take care of yours.