It was a Hard Week

Monday I took Emily to the pediatric cardiologist.  It was not at all what I expected. I heard a lot of phrases I didn't like.

You and your husband should take a CPR class.

Put 911 on speed dial.

You should purchase an AED (automatic external defibrillator). 

Emily probably will not be able to play competitive sports. 

If Emily faints, call 911 and start CPR. 

I may be a total oblivious idiot, but I was shocked.  All I'd heard previously was "there are some medicines that she will not be able to take."  This is an understatement.  The list is ELEVEN PAGES long.  Ironically, it includes zofran which the doctors have insisted on giving for nausea which has not helped AT ALL and does not include reglan which does help and we've had to fight to get them to use.

This adoption has been so hard.  I think the hardest part is the separation we have experienced in our family.  No one ever warned that adopting one more might mean that we'd spend a lot of time with one parent and a child and the other parent with the other children.  No one ever warned that we might spend most of our holidays not together as a family.  That most of Emily's "firsts" would be spent in the hospital puking into a bucket. I've struggled with some bitterness.  I've wanted to be the super adoptive mom that can say, "Thank you, God, that I didn't know about my child's special need because otherwise I might have chosen another route."  I'm ashamed that I'm definitely NOT the person I'd like to be, especially the adoptive supermom.  

But now suddenly I am faced with the very real possibility that my child could pass out and die.  

I realize how deep my love is for my cherished baby.  Yes, even though I'd occasionally like to clunk her!

BUT...

Her doctor said, "Let's go ahead and try the CVS med, amitriptyline.  We'll monitor her closely and I think the risk is low."  The physical heart looks great.  No problems.  It's just the quirky electrical wiring that's a problem.  For you medical types, Long QT. 

So Tuesday night we started the med and today we went back for another EKG.  

The kid is determined to drive us crazy.  

The EKG was normal.  

The doctor was all smiles and quite relieved.

So, as of today, here's what I heard:

The doctor suspects that she does not have Long QT.  He will treat her for it anyway.  We should still take CPR because it's a public service, but treat Emily like any other kid (who pukes, gets dehydrated, and winds up in the hospital).  We do not need to get rid of our alarm clocks, turn down our doorbell, or avoid loud, sudden noises.  We do not need to steer her away from soccer and toward non-competitive athletic endeavors.   

Tuesday we double the amitriptyline dose.  They'll do another EKG in two weeks.   If all is well we'll increase the med again and do another EKG.  If all is well, all is well.  See you in August, doc!

They did genetic testing.  In several months we'll have the results.  There's a 20% chance of a false negative with Long QT.  

It's been an emotional roller coaster.  I guess I don't need to tell you about the gratitude and relief we felt.  Personally, I'm sick of the wild rides and ready for a nice state park.  With a beach.  Emily would be happy for that, too.  ; )  

Thank you, Lord. 

Emily's Home

Our Emily's "Ome!"   

Our hopes for a shorter duration crashed and burned.  

Still throwing up and having periods of nausea but on her way to health.  

What to expect for next time? 

Still

Emily is still in the hospital but she's got a student nurse hot on her tail so I have a few moments free.  I'm grateful.  She's still throwing up, still not taking anything by mouth but talking some and moving pretty fast.  This is the first day she's been interested in playdough or books or MOVING.  It feels good.  We've almost always had nine day episodes.  I'm hoping that we may have a shorter episode this time...of course, this may cost me big time; kind of like hoping for an early delivery and going past your due date. 
Kenton's mom watched the kids most of the time when Emily was hospitalized last Fall.  When they left for Florida, Kenton planned most of his indoor work (bill paying, crop planning, taxes, etc.) for these times.  Plus, we had some friends that helped out.  Kenton is getting busier and Martha is back so guess where the big kids are?  My parents have been planning to come.  They stopped to visit my Uncle Craig, are heading up to Niagara Falls, and then will come here.  It's a bit hard to be here and know that mom and dad will there soon...and I didn't have a chance to change the sheets on the bed or straighten up. 

********



Milk dud report:  Kenton bought a "new" for us tractor.  Davis is a bit disgusted; it's blue.  However, I was informed that it has a nice buddy seat so I guess it isn't all bad.  ;) 
We're shipping more milk than ever before 10,000 lbs/day.  I'd give you that in gallons but I can't quite remember how many pounds in a gallon, something like eight, I believe.

The Puzzle

We made it to day 30.

So we have a new record. 

But now Emily's back in the hospital.

Emily was miserable Friday night.  She was twisting, rubbing her belly, and asked to go down for a nap and bedtime.  Around 1:30 a.m. she threw up.  We had four hours to get to WVU and get her ACTH level checked.  So I threw stuff in the car and beat it for Ruby.  BUT when we got here she hadn't thrown up again, she was pointing and talking and SMILING.  We hung out in the parking lot until around 3:00.  Then I took her home and figured she maybe just had a belly bug. 

Around 5:00, having missed our window to get her ACTH level checked, we came back.  Sleep deprivation and frustration maybe me teary.  Ugh!  Emily saw the needles coming and said multiple versions of Ow! until the blood was drawn and the IV needle taped into place. 

If I'm understanding,  the kidney people are ruling out renal tubular acidosis, she'll be moved back to GI, and an EKG is showing prolonged QTc.  We may meet with cardiology while we're here or for our scheduled appointment in a week. 

This kid constantly keeps us guessing.  

Life with Emily will never be mundane. 

God continues to refine us.

Steve

Praise God!

No chemo is necessary.

The topical application is working!

Soli Deo Gloria!

******

I guess it doesn't hurt to mention that he (and others) had an article published.

I haven't read it because the title alone stumps me.



Molecular characterization and functional significance of the Vti
family of SNARE proteins in tick salivary glands


Let me know if you want further details.

Still Doing Well!

As you can see, Emily is still doing well on Day #28.  

We are somewhat in shock but it's wonderful.  Davis' first question of the day is no longer, "Does Emily need to go to the hospital today?"  or some variation of it.

Here's the scoop

• She probably cannot take amitriptiline.  If her QTc is prolonged every time she gets sick it would not be safe for her.  
• They started her on a drug called propranolol a week ago.  It's used for stage fright.  They did not expect it to do much but something seems to be working...
• Or maybe God chose to heal her.  We don't know.  Either way we are totally grateful for at least a hospital reprieve.
• Yesterday morning she got stung by a wasp on her little toe.  She didn't shed a tear or anything.  It helps me better understand how utterly miserable she must be when a vomiting episode hits.

Several nights ago I posted something about Emily's speech on an adoption forum.  In the process I mentioned that Emily is hospitalized regularly for CVS.  Out of the blue I got an email from someone who said she's had CVS for years and offered to answer questions or listen or whatever we felt might be helpful IF we wanted to talk to her.  I've been in touch with two moms whose children have/had CVS but no one who has actually had it.  It was very enlightening and encouraging.  She's taking a very small dose of amitriptiline and CoQ10.  She went from 90 lbs and episodes several times/week to not having an episode in 7 1/2 years.  She still has to be careful and avoid triggers but has gained some weight and is working full time.  She helped me understand what Emily might be going through and many things to watch for.  It was such a HUGE blessing!

I am so grateful to those who continue to pray for Emily and for us.  It is such a beautiful thing to hear from mom that somebody from her church who doesn't know Emily is lifting her up in prayer every day.  I know there are a lot of people who are praying.  We thank God for each of you and pray that He will bless you as you have blessed our family.   We are humbled.

God bless you.

Day #25

Since my two-year-old woke me up by yelling, 

"MOM!"

repeatedly, I suspect it's going to be another GOOD day.  

We had an unofficial EKG done last night and her QTc number or level or whatever was below 440.  

I'll be calling Wisconsin this morning to  see if they want to change anything.

We Like to Move It, Move It

 In celebration of Day #23...

the kids and Kenton watched Madagascar 3.

I also got to see my husband initiate a dance routine with the kids.

The farmer in the dell doesn't usually dance...it was quite the sight - especially from behind.  :-P

Too bad I didn't have the camera on video.  :D

Day #22

It is day #22 of Emily's cycle.  

We've NEVER gone past today.  

EVER.  

Twice we've reached day #21.

I expected Emily to be sick on Easter.  She has this wonderful track record with hitting holidays and her episodes have been moving closer together.  Each day without her sick this week has felt like a gift.    Of course, it also has us a bit on edge as we try to plan ahead.  

We saw a bit of twisting and tummy rubbing the other day....

But no other indications so far.

Celebrating each day of continued health!

Praise God - Soli Deo Gloria.