It's over - mostly!

Thank you for praying!  We have a follow up on July 12th, but we are all home, resting and she is healing quickly.  Have to keep reminding her that she can not run!!!  No lifting, running or swimming for the first week, then all restrictions are off.

It didn't go as smoothly as we planned.  She was in 6 1/2 hours - a bit longer than "normal".  She had two tachycardias and the second one was difficult to find.  They ended up calling in anesthesia (no intubation though, and for that we are grateful!) and using a larger basket catheter.  They found it in the Atrial area.  The doctor told us that they had to use all the technology they had to get this done!  The larger cath meant a 5 hour recovery minimum - which put us at 11:30 PM for a leaving time.  We stayed over and didn't get home until 1:30 the next afternoon.

But - no complications, she is in no pain, and she is moving around like a champ.  We ( Mike and I )  are exhausted and that has been a bit of a surprise for us.  It's amazing how much sitting around can take out of you if it is done in a hospital and your child is in the lab....  Just enjoying the "normalcy" of today and grateful that we are done this particular chapter in Katie's life!  : )

Tomorrow...

In at 10 AM, more than likely 1 1/2 hour delay before she goes "in".  Will update when we get home - probably late tomorrow night!  Pray for us as you are lead.  Thanks!

Pre-admission update

The pre-admission testing went very well.  No x-ray - just blood work and a lot of conversation with us and with Kate about exactly what is going to happening.  It was also an opportunity for Kate to meet some people who she will see next week so that she isn't as nervous - there will be a familiar face or two when we can't be with her.  I appreciated the team at CHOP - they are definitely good at what they do (although as an adult I felt a bit out of the loop - meaning that it is SO geared toward her being comfortable that we kind of felt like spectators, but that was fine).

We met with a Nurse Practitioner that has been working with Dr Vetter for 15 years and knows about exactly the way they do the procedure at the hospital currently.  Apparently some of the paperwork we received was a bit outdated. So - the way this is being done was explained in a different way yet again - but this time MUCH less scary.  No incisions.  It is done through an IV type of port - so it will act very much like an IV wound afterward.  She explained that the average procedure time is 4 hours - with the mapping being the most time consuming part.  She will be sedated while we are with her, then the IV will go in, again with us with her.  By the time they move her to procedure she will be pretty out of it (they did this with Chris with his last surgery - that pre med put him to sleep completely).  Once they take her to the Cath Lab, they will put her under further.  The reason they are calling it twilight is because she will not be intubated unless she moves around too much and they have to truly put her under.  She will not have to be "awake enough" to do anything - and she was told yesterday that if she can tell them to give her more medicine she should and they will - she shouldn't be able to have any idea what is going on.  There are up to 5 sites, but that isn't always the case.  There is a slight chance they will have to go in through the neck as well as her legs, but that isn't very common.  And the reason they don't have to monitor her over night is that before she leaves that Cath Lab they will attempt to put her into arrhythmia to make sure she isn't able to do it - and apparently if they can't get her to, it can't happen on it's own.  Once they know for sure she can't go back into arrhythmia, that's when they are "done".  We will be back (unless we get caught up in a conference with the Dr.) with her in her room before she comes completely out of sedation - apparently most kids, since they fall asleep and wake up in the same room with their parents standing there, have asked when things are going to start.  That makes me happy - I didn't really want her "awake" in any way.  Her recovery will be 5 hours, and by the end of that time, they will have her walking around to make sure there is no bleeding from the sites - so she can sit up and walk around when she gets home - in fact they said no "real" activity for a week, but NO lying around in bed - she has to up and walk around - nice and slow, but around.  If they are at all concerned about bleeding, they will keep her there until they are pretty certain those veins have healed to the point she won't bleed.  The biggest step in her recovery is the bruising at the sites - much like an IV will bruise if it is "done wrong".  All in all - that should be the only "pain" she ever feels.  A week later all restrictions come off.  That's it. 


Please continue to pray for us!  We really appreciate it!

On Our Way to CHOP for testing...

"Whatever may pass and whatever lies before me - let me be singing when the evening comes.

BLESS THE LORD O MY SOUL!"

What are we doing these days?

Well - first off - it finally bloomed!!!  It was light pink - and definitely one of "ours".  And NO mold - which means it lives to bloom another year......

On Monday we head to CHOP for Kate's pre-admission testing.  I thought it would be a quick shot into Philly and home again - even considered bringing the boys with us.  But we got the paperwork and it will be 2-3 hours (????).  We also asked it to be moved up to our area (Lehigh Valley is a CHOP extension), but that wasn't possible.  It seems this is MUCH more than a blood test - hence the 2-3 hours.  But on a good note - the paper work says we should leave with a surgery time.  That will help a great deal in the planning!

This is also our last day of school.  EVERYONE is excited about that.  I start school on Monday, but from what I have read so far - this will be a really easy semester as long as I stay on top of it.  If all goes as planned I would like to graduate with my Associates by next December (but finish my classes in August 2013).

We spent Memorial Day putting in our vegetable garden.  That was fun.  I am not sure how much our neighbors appreciated us putting the manure down during their BBQ, but in my humble opinion it added to the ambiance....  Here's a shot of Mike explaining "his" plants to the twins (we each have one we pick out ourselves.....), and why he planted them in mounds.

  

And this is one of those reasons I love this man.....

I cropped a closer shot of Mike with the boys (he doesn't know this picture was taken.....).  Look where he has his hand as he explains things to Stephen.

There's just something about having a hand resting on your shoulder that says "I love you!"  Maybe it's just me - but one thing I can tell you.  I have had that hand resting on me through some of my roughest times.  I truly do not know what I would do without my husband.  And over this next month of surgeries and procedures, I know that hand will rest on my children whenever they need him and on my shoulder as we wait in the waiting rooms in the days ahead of us.  Mike demonstrates to me the love of Christ "with skin on" - and I am so very grateful.

We'll keep you posted as things continue!!  In the meantime we are cleaning out our house like crazy - hey - once we aren't doing school I have to do something!!

Lamentations 3:21-23

Woke up this morning with this verse flooding my thoughts.....

"But this I call to mind,

    and therefore I have hope:

The steadfast love of the Lord never ceases;

     his mercies never come to an end;

they are new every morning;

    great is your faithfulness."  (Lamentations 3:21-23)

Faithfulness has "been my theme" recently (although Redeeming Love would also be a good theme right now and is the bedrock of that faithfulness, isn't it?)......

No particular "reason" for this verse to be in my mind today.  I am not currently wrestling with hopelessness in a way that I would need to find a reason to have hope.  But isn't that the point?  I don't need to be hopeless to need fresh hope.  I do not need to feel  hopeless to need the reminder that I am loved with an everlasting and steadfast love.  I ALWAYS need the reminder of the character of my LORD.  He is steadfast - no matter what this day / week / month / year may bring (or how fickle I may be.....).  He is merciful no matter what my circumstances and my feelings may tell me.  I can not outlive the mercy of the Lord.  He is faithful - when I am not.  And that - that gives me tremendous hope.  That faithfulness and mercy - gives me strength for today - and bright hope for tomorrow - no matter what the season of life.  No matter where you are today - no matter what may be ahead in this day that the Lord has made - may you be reminded that He is faithful.  May this be your hope - that His love never ceases for you - that His mercy never ends for you.  Not only that they are NEW every morning !!  Including this morning.  

  

Reminders to trust - He is faithful to answer!

"O God, I have tasted Thy goodness, and it has both satisfied me and made me thirsty for more, I am painfully conscious of my need of further grace.  I am ashamed of my lack of desire.  O God, the Triune God, I want to want Thee; I long to be filled with longing; I thirst to be made more thirsty still.  Show me Thy glory, I pray Thee, that so I may know Thee indeed.  Begin in mercy, a new work of love within me.  Say to my soul, "Rise up, my love, my fair one, and come away."  Then give me a grace to rise and follow Thee up from this misty lowland where I have wandered so long.  In Jesus' Name, Amen."


(The Pursuit of God - A W Tozer)