Last week was a rough week. In and out of the hospital/ER/clinic, emptying barf buckets, making sure that someone was available to position the bucket, trying to keep caught up with school, trying to make sure that what was going in was greater than what was coming back up, etc.
I was also mad. Mad at the situation that is our new reality. I thought a lot of things that I'm not proud of. I'm pretty ashamed of how immature I can be.
I'm so thankful for Kris Graber. Kris let me be real. Yes, lots of friends would have, but most don't understand our current journey. Kris didn't move aside while waiting for lightning to strike me dead as I gave voice to some pretty awful things, SHE CHUCKLED! She knew where I was coming from...or maybe not, but she acted like she did. Kris is a rock....or at least I just always see her smiling, giving voice to the blessing that Sage is in their lives, advocating for adoption; I never realized that she's had dark days, times of doubt, times of questioning.
While it may be normal to occasionally rage and wonder what the heck God is thinking!!!..I guess it probably is...I DON'T WANT TO BE NORMAL! I wish I was a lot more mature.
(During one of the approximate 502 times she watched the Wiggles last week)
One big struggle is finding balance. If your two-year-old is puking their guts out for days on end and all you can do for them is offer popsicles and water, hold a bucket as needed, and let them watch Wiggles videos 24/7 is it okay? What happens when the child is well again and still thinks that popsicles and the Wiggles should be available on demand?
Emily's been pretty sweet and well-behaved. HAS BEEN sweet. I think she turned (developmentally) two this past week. Lots and lots of temper tantrums. Sweetness and light come to a screeching (yep, literally) halt when she isn't allowed to watch the Wiggles 502 times a day, or she has to pick up the apple slices she spilled, or (worst of the worst!) she isn't allowed in mom and dad's bed at 3:30 a.m. (Kenton figured out that earplugs work wonders. I was thinking more of a muzzle.) She just spent nine days puking her guts out. It's hard to say NO and deny her things she wants.
It's also hard with the other kids. Do you reward sacrifice? Never, sometimes, or always? When they cry and say it's hard, what do you say? Suck it up, I understand, it will get easier over time, God is going to use this? Ugh!
We had a pretty big scare today. Emily was sent home with a prescription for 12 ml of an anti-nausea drug. In passing I asked if it was available in another form since it was a lot to get down a puking toddler. The doctor mentioned that the dose didn't sound quite right but I didn't catch the correction in all the chaos. As I was leaving the pharmacy today, I happened to glance at the bottle and thought to double check the dosage. She takes 12 ml of bicitra so the quantity isn't unheard of.
Someone missed a decimal point.
It was 200% of what an adult should take.
It could have been deadly.
So in the wee hours, when the Chinese empress wakes up and shrieks to fill our double bed to overflowing, I probably won't envision muzzles and gags, but thank God for continuing to give Emily hope and a future.
Today is Day #6 of this episode. At Christmas time Day #6 marked the end. I kind of took it for granted that this would round would be tapering off by now. It's not. She's started trying to eat a bit again but can't keep anything down for very long.
She's whiny, clingy, and miserable. All seven of us pretty much know both Wiggles videos by heart. We could probably do the dances, too. I broke down and ordered two DVDs. Maybe at least the rest of us won't have to be subjected to 16 hours of Wiggles everyday; I'll be able to put them in the DVD player. Thank you, Lord, that it's the Wiggles she's fallen in love with and not Blue's Clues or Barney.
I'm in a funk. I know part of it is monthly timing but I'm having a hard time not throwing stuff and saying horrible things. I am amazed how well the kids are doing....or so I thought. All of them are well versed in the signs and can hold the barf bucket like pros. They lay down beside her and talk to her, rub her back, bring her toys, try to make her smile, offer her sips of water, and are very sweet. It's a nice contrast to their mother from the Black Lagoon.
But it's hard. I just went to tuck in kids and Megan was crying. She's tired of every plan being changed. We all are. It's hard. Tired, crabby, stressed, uncertain, overwhelmed, and crazy. We've simplified life about as much as is reasonable...except for the noodlehead who decided to be John in the Easter Play. Megan had a baby shower that she wanted so much to attend on Saturday. I saw that she had a ride(Thank you, Alice!) and she came home all smiles, jabbering about the delicious food, gorgeous cake, fun time, and every thing else, but I know that she was disappointed we couldn't go together.
I read someone else's blog (Thanks, Nicole!) whose child has cyclic vomiting. One thing that really popped out was...
"We don't make plans. We have ideas."
I think this may have to be our new mantra. So far this has affected plans for Thanksgiving, Christmas, several events our kids were in or wanted to attend, it looks like it will hit for Chinese New Year, and on the date we planned to head for Florida. I think I'll work on dumping "plans" from my vocabulary and just work from ideas.
Sacrifice won't hurt our kids if they allow this to sweeten them instead of making them bitter. BUT I need to do a better job of juggling things here.
Someone once said, "You're probably a little too honest on your blog." I don't know if that's true or not, but I'm not writing how I really feel here. I'm trying to follow that thing about "if you can't say anything nice..."
Maybe that way I can avoid the heavenly lightning strike I deserve.
Emily is sick again. We went back to WVU on Tuesday. She had vomited probably 60-80 times in twelve hours and began throwing up blood. I did what I'm good at and hit panic. Not proud of the panic, but it got me to the very front of the several hours long wait in the ER.
She was admitted. However, every time we've done this they've seen something in bloodwork to be concerned about: her sodium was low, her hemoglobin was dropping, or whatever, but this time...
Aside from being dehydrated, she was doing great! Well...as great as someone can be that's barfed so much they've torn up their insides.
She came off the IV Wednesday morning and they encouraged her to drink, drink, drink. She's still throwing up, but drinking enough to stay hydrated, so we are back home again...with orders to get her right back if things don't go as planned.
Several people lately have questioned whether it could be emotionally related. Our pediatric GI says absolutely 100% NO WAY is this emotional. It's physical.
BUT he does recommend finding her...emotional help or US getting it to be able to help her with facing misery every fourth week.
It was a bit of a bombshell.
Emily's so happy, exuberant, joyful, and busy when she's well and the rest of us talk about how it's affecting our schedules, or plans, or whatever, and I never once thought about WHAT it's doing to HER! What's it's like for her to yet again face the onset of nausea and begin throwing up over and over and over again. I've thought of the physical trauma, but never the emotional trauma of cyclic vomiting.
Plan #1- Her records have all been sent to Nationwide Children's Hospital in Columbus, OHIO. They have a pediatric GI team and specialize in cyclic vomiting.
It's a good plan
but they have a six to eight MONTH waiting list.
Plan #2. See if they can get her seen at the University of Wisconsin in Madison. Apparently the doctor that wrote the book on cyclic vomiting is there.
I don't care WHERE we have to go as long as they can help her.
It's hard for people who have not seen her sick to understand how fast she turns into a dehydrated, miserable puking machine. When she's well, she's terrific. When she's sick, it's heartbreaking. Not to mention what it's doing to her teeth and throat and psyche.
I know one thing that God is teaching me through this is to trust Him. Too often I put my faith in doctors and medicine and lose hope when they can't live up to my expectations. King David said, "Some trust in horses, some trust in chariots, but we trust in the name of the Lord." My version should read, "Some trust in doctors, some trust in medicine, but I will trust in the name of the Lord."
Since WVU can't help her, I hope that we can get her in somewhere soon that can. But I KNOW that God is sovereign. He has a plan for Emily's life whether specialists can help her or not. His plan is one that will give her hope and a future.
It's such a disappointment that Emily was sick during all our family Christmases. She is a real riot when she gets a gift. She got Mickey and Minnie Mouse from Auntie Sandy and Uncle Bob. She's had a death grip on Minnie pretty much all afternoon.
Typical kid, she did make sure the box was empty. She must have been pretty excited because she kept saying, "Mom, wow!"