"THAT" Family

Drama , drama, drama!

We've morphed into THAT family.  

You know, the ones that start with a basic hangnail one day and several days later it has become infected, gangrene has set in, and the whole arm will need to be amputated.

Honestly!  Too many things have turned into a circus lately. 

Emily's EKG results were not what we hoped.  For you medical types, her QTC was 491.  It has to be 440 or less.  They are hoping the results are just high because she is sick.  We need to wait a week and do another EKG.  If her QTC is 440 or less she can begin taking the medication. 

IF we understood an article correctly, if CVS (cyclic vomiting syndrome) is incorrectly diagnosed (as something other than intestinal issues) it is usually misdiagnosed as distal renal tubular acidosis.

Ironic, eh?

*****

Not to be overly dramatic, but our trip to Florida followed our let's-just-amputate status.  

Kenton went swimming with our car keys in his pocket.  God "healed" our keys long enough to get our van back to grandma's but we had to have Jack overnight our extra keys from home because the van wouldn't leave the yard without them.  

Kenton got a call that his brother had been kidnapped and he needed to send money immediately or they were going to kill him.  Good news, his brother was and is fine.  

Emily wound up dehydrated in a Florida ER-by far our worst medical experience to date.  After sitting in ER for five hours with them doing NOTHING they decided they couldn't help her and needed to transport her to the Tampa children's hospital.  They refused to listen to us and tested her for strep?!?  Her throat was red.   Naturally, our experience of having been through nine previous episodes of vomiting AND phone numbers for specialists AND pleas to TRY putting an IV in her foot were ignored because "there is a lot of strep going around."  They finally put an IV in her foot and gave her a bolus.  

Emily got her bolus, we threw stuff in the mess-mobile, and headed for WVU peds.  To finish the story, Kenton picked us up Tuesday morning and we headed for Milwaukee.

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One thing our kids were looking forward to about Florida is picking fruit and squeezing juice.  

The monopoly game couldn't be left behind.

Davis and Micah played their own game.

Emily's private beach at Grandma's.

Beaches, even small ones, are meant to be shared.

Davis and Jamison had fun with excavation.

Grandma and Grandpa live in an exclusive neighborhood in Florida. 

Exclusive meaning that they're fortunate to have plenty of other snowbird friends and relatives living within a block or two.  The neighbors loaned a high chair, booster seat, air mattresses, toys, and bikes to ride which made our stay so much nicer.  Grandma and Grandpa added a bike with "steering wheels" to the neighborhood collection for Micah and Kaitlyn to share.  

The kids enjoyed riding in the driveway and on their quiet street.  

Grandma kept her cool and her reputation as the world's greatest hostess with three fabulous meals a day.  She somehow managed to feed the masses with a minimum of mess and fuss.

  

Check out that fabulous geranium!

The Ganson crew joined us on Monday.  It was so much fun to have them see Emily well...at least for a few days.  Emily and Abby WILL BE best friends someday.  Looks like they're off to a good start, eh?

Grandpa and Grandma

Naturally, the highlight of the trip was the beach.  :D

We went to Sanibel Island.

I STAND CORRECTED!

My family says the highlight was THE RODEO!  

But I wouldn't know, Emily and I were busy fighting with ER staff at that point.  

That's all, folks!

Milwaukee

We Just left our meeting with Dr. Li.  It gave us a lot of hope.  Dr. Li identified Emily's problem as sato cyclic vomiting syndrome.  It is the most severe form.  Of the over one thousand kids he has seen with cyclic vomiting syndrome, He has seen 20 - 30 kids as sick as Emily.  One boy in particular was like Emily.  Dr. Li was able to keep him out of the hospital for four years at one point,sick but not hospitalized.  He has begun to treat Emily as he treated that boy.   One of the medications can cause arithmia  so they did an EKG before we left the hospital.  He does not think she has a kidney problem.

Dr. Onder  said it would be good if three or four doctors were all convinced that THEY  had the answer and were racing to to the finish line.   For now we are pretty relieved to have TWO doctors racing to win the I -told-you-so award.

More when we get home.

Heading to Florida and Other Things

We're heading for Florida TOMORROW!  I am so ready...at the same time as being NOT so ready.

An ice storm Tuesday along with a power outage put me behind schedule one day.  Today Emily had a doctor's appointment which ended with a three hour ER visit.  Her "sore arm" turned out to be broken up near the shoulder.  I don't want her to end up with a victim mentality but some days it does seem as if she was "born under an unlucky star" if you know what I mean.  She's young, she should heal quickly.  AS THE WORLD TURNS, out of ALL MY CHILDREN, she sure knows how to turn our lives into a soap opera.  Maybe that's just what happens to THE YOUNG AND THE RESTLESS.

BUT while I was out with the three younger ones, Jamison and Megan took it upon themselves to straighten up the downstairs, clean the bedrooms, burn the trash, and clean the kitchen.  I've got some pretty great kids.

Since I can't sing California, Here We Come, I need a song for Florida.  On the way down we're stopping in North Carolina to meet my friend Sandy.  I'm so excited!  I've been hoping to get together for awhile.  In Florida, we'll sponge off my in-laws, enjoy hearing my f-i-l sing with a male chorus under (the famous) Lloyd Kaufman, head to Sanibel Island for a day, take in a rodeo, and enjoy life in the sun for a bit.  Ben and Janelle and their crew will be coming in on Tuesday just to add a little more stress and fun.  Eight kids under 12 and six adults should make for a fun time.  Carl and Martha may decide to be snowbirds for an extra month or two after we all leave.

If Emily gets sick...I am ready to throw in the towel on traveling with her or doing anything else.

Milwaukee called.  They have an opening for Emily on March 13 or not till the end of April.  I am totally torn.

If it's just RTA I hate to put her through unnecessary testing and stress.  Not to mention this is one or two days after we expect her to get sick again.  This means traveling with a puking, possibly dehydrated child for fifteen or more hours.

IF we decide to keep the March 13 appointment, I'd probably get home from Florida on Saturday and get on the train for Milwaukee on Sunday-hopefully hitting Milwaukee before it hits.  With Emily's track record the likelihood of this is about 0%.

If it's NOT just RTA, I hate to not be aggressively looking for answers.  Dr. Li plans to meet her, have a psychologist do an evaluation of US, and send us on our merry way.   So IF she winds up in the hospital there I guess it's possible that they could make some decisions about what to do and save us a turnaround trip back to Milwaukee.  

I'm a black and white sort of person.  I despise dithering.  I wouldn't mind a little visit from the Angel Gabriel, a talking donkey (although cows might be more appropriate), or a voice from Heaven  announcing WHAT is the best here.  Feel free to weigh in.

Eight hours ago I was planning to go to Milwaukee.  Now I'm not so sure.  Stay tuned for more of this particularly boring soap opera.

 

At Our House

Have you ever seen the show Hoarders?  I watched it during this last hospital visit.  While I'm not quite at the point of storing urine in bottles because our toilets don't work nor do we have rooms full of stuffed animals or home shopping network treasures, there were enough similarities that I made a resolution or two.

Yesterday, and, yes, it took ALL day, I excavated six feet of countertop that's been buried since we came home from China.  I wrote thank you notes.  Three of my children couldn't resist the urge to grow BEFORE the season changed so today I put all the flood pants away and went "shopping" in the upstairs mall and put the next size up in their drawers.  Of course, I didn't get Mt. Laundry-Everest done first...so I'll have odds-n-ends showing up for awhile.  I went through six bags of hand-me-downs and restocked the upstairs mall.  Murphy's law has decreed that this means someone will...*bless me* (yes, it is a blessing, but just once I'd love to have a couple weeks without unsorted clothes sitting around) with more tomorrow.

We are two-thirds of the way through the school year.  We finished our homeschool review for the first half.

Megan went to a birthday party.  Guess what they did for fun?

This is what happens when ALL the heifers escape and play tag when your yard is wet.

Nice, eh?

It's the farm version of aerating your lawn.

This is what happens to the baby of the family.

Davis and Emily had fun playing with Handy Manny's motorcycle.

 My kids took control of the art section of their education and painted these bird houses.

I guess that tongue helps him focus?

Kaitlyn, Lydia, and dad enjoyed a new DVD.  Aunt Janelle sent the kids a care package that was a hit...once they figured out that it was for them.  :-P   Janelle assured me that this Praise Baby DVD will calm Abby when nothing else will.  She figured it would be a great alternative to the Wiggles.  She was right!  It took a bit but Emily loves it.

Our oldest daughter sans face paint.  :-)

We aren't sure what to do about Emily.

Nephrology: says it's RTA.  No need to pursue anything else.  BUT she's been on the medicine for two months with no change in frequency or duration.   They say to give them three more months.

GI: says they think there's more to it.  It's in her best interest to get her to Milwaukee where a team will evaluate her and begin working to isolate triggers for cyclic vomiting.

I hate to put Emily through a bunch of unnecessary stuff if nephrology is correct, but I'm not convinced they are.  Kenton is okay with moving forward but his personal choice would probably be to wait out the three months.  I took an informal poll of several nurses, Emily's last medical team, and another mom of a kid with cyclic vomiting, EVERY LAST ONE said GO TO MILWAUKEE.  When we finally hear from Milwaukee I think we will try to get there asap....of course, everything is subject to change.

Home

We're home.

Emily is still throwing up a bit.  

Not yet very happy with life.  

Just a couple smiles today.  

We're hoping to see more personality return in the next two days.

Hospital Again

Emily came to the hospital on Tuesday.  Each day we've thought she was going home.  It will not be until tomorrow at the earliest.   She has not been able to keep much down today.  The team insists she needs to take this one medication.  I've been refusing because she throws it up.  Now she's also started throwing up the oral anti-nausea drug.   We'd like her to take it orally because it won't be available by IV at home, but she's not keeping anything down anyway. After six days, we're a bit discouraged.  We expected to see some major improvement by now.

It does seem that they are getting closer to answers.

Nephrology is CERTAIN it is RTA (renal tubular acidosis).  They believe they have ruled out all the possibilities except distal (?!?) RTA.  There is a definitive test that Emily will take once she is well that will prove whether or not she has this type.  No cure, but easily treatable from what I understand.

GI is saying GO TO MILWAUKEE.

Pediatrics is not convinced it's RTA but they are saying it's a possibility. 

I probably shouldn't say this publically but I'm not wild about her nephrology doctor.  She has said two things that are beyond stupid.  One was that we couldn't automatically assume every episode is caused by the same thing--Really!  I've never had a child get sick for nine days every three weeks.  That's quite a coincidence.  Emily's been on the meds they use to treat this and still had two routine episodes.  IF this is the problem, at what point will she start to respond to treatment?  She also said that using this medication should improve Emily's attitude.  WHAT?!?  "She will be happier, not so unhappy all the time." Like I said, "WHAT!?!"  She is NOT unhappy.  She is loud, joyful, exuberant, and active when she is not sick.  This is almost insulting.  Please, check with me before you assume that my child behaves the same when she is sick as when she's well.  I think the doctor is a lovely person with a fascinating accent, but VERY difficult for me to communicate with.

I'm a little frustrated with doctors ASKING to touch my daughter's belly.  You KNOW you're going to do it, just tell her you'll make it quick.  I'm also frustrated with people TELLING me I need to encourage her to drink.  Maybe I look learning disabled but after riding this roller coaster for the last six months I know a little about hydration. 

If you want my gut feelings: It may be RTA, but if it is, I think there's more going on.  I'm ready to get off this particular roller coaster for a couple weeks.  

My friend Rebecca is here recovering from surgery.  We are so thankful that she is doing well.   She'll need some chemo once she's recovered. 

My brother Steve has been diagnosed with skin cancer.

Not Yet or No

 Emily began throwing up around 4:30 p.m. today.  The reglan seemed to help keep it calmer initially but she threw up the second dose and it's been pretty constant ever since.  I kept track because they always look at me like I exaggerate when I take her to the ER.  She's had 29 episodes of vomiting/heaving, mostly the former, since 4:30.  It's not quite 9:00 p.m.

(Little Miss Bright Eyes on Friday)

Milwaukee called today.  It looks like, barring some intervention, they will be unable to see Emily until the end of March or early April.  

Bring on the straight jacket.