Friday, February 6, 2015

Heart Cath #8

Hi!  Harlie and I drove up to DC today for Harlie's heart cath.  I think this is number eight for her.

It was a crazy morning, as usual.  I don't know why I tell you so much about my life that might not be pretty (or outright embarrassing).  

Anyway, Tom loaded my car this morning and made me an egg sandwich to go.  So, I loaded Harlie up and we left right after Tom and the boys left to walk to school.  Before I got out of the neighborhood, I realized I forgot to leave some money for Kelly (my niece).  She is helping with the boys and the dog since I am away (and helps me throughout the week, too).  So, I turned the car around and headed back home.  But, I happened to see Tom with the dog headed back towards the house on a different road.  So, I thought I'll give him the money so I don't have to get out of the car.  So, I turned around again to get to him.

Then I headed out again.  After a few minutes I started to eat my egg sandwich.  And the yolk spilled out on my sweater.  Of course I didn't have any napkins.  As I'm driving, I feel around my console and find a glove.  So, I tried to use that.  So not pretty!  I took the next exit and went through a drive through for some napkins.  After rubbing some napkins on my sweater, the napkin fell apart and left a bunch of white fibers on my sweater.  It looked worse!  After leaving that parking lot, I turned right when I should have turned left.  Ugh!  I just could not get myself straight!!!  

While I was waiting to make a u-turn, it hit me that I didn't put the suction machine in the car.  Oh heavens.  So, I called Tom and asked him if he put it in the car.  No.  Unfortunately not.

This day was not off to a good start.  I think it's safe to say that I am officially out of practice of trotting off to the hospital.  Overall, not a bad thing.

After sitting at the red light for a minute I reasoned with myself that we hardly ever actually use the suction machine anymore.  Now that she's capped so much during the day, we go days without needing it.  So, I just had to get to the hospital, and then I'll just have to make it home.  Should only be a few hours total without it.

On the way up, I talked to my friend Mike about the HOV (it's now a toll road, and I didn't know how that worked).  So, he gave me the details and I told him about my morning.  He told me I should just stop at Target and grab a sweater.  Exit 143, he said.  So I did.  I ran in, grabbed a sweater and ran out.  Quickest (and cheapest) Target trip I've EVER had.  

Made it to the hospital and checked in.  All's well.  Then I take Harlie to the restroom and I look in the mirror.  I have egg in my hair!  I ran through Target, with egg in my hair!!  I checked in, with egg in my hair!!  Geez.  I'm a mess.  Sometimes, I don't know how I do so well by Harlie.  She's where all my good stuff goes.  Then Tom and the boys.  I get the crap that's left over.  Which leaves me with freaking egg in my hair.  Maybe it's time for a hair cut.

So, we got all settled and waited for them to take us back.  Heather, our social worker, came by and brought Harlie a TMNT blanket.  She said she's been saving it just for her!  Isn't that so sweet?!



Oh, and we had another first today.  During the drive up, Harlie told me she was hungry.  This is the first time she's ever told me she's hungry before a surgery.  I was thinking it might happen.  So, I set my alarm for 3am so I could tube her a can of food before the cut off time of 4am.  I am so glad I did that now.  Maybe that helped a bit.

They had an emergency, so we were delayed getting taken back.  We were supposed to go at 11am, but didn't go until 2pm.  All that time and Harlie was SO good and SO patient!  Other than telling me she was hungry a few times, she didn't complain.  But I was STARVING.  I thought I was going to pass out or kill someone.  I struggled, for sure.  At one point she pointed to her heart and said, "heart." So I said, "Yes, you're having a heart procedure." And then she said, "Where's the doctor?"  I had to chuckle.  She was ready to get the show on the road.  I am totally loving this more mature Harlie-girl.  She is really growing up.  

They let me go back with her.  And I stayed until she fell asleep.  She was amazing!  Didn't cry, complain or fuss.  She climbed over from the stretcher to their table.  And was totally comfortable doing so.  My how things have changed.


After a few hours, her doctor came out and gave me a report.  Last year her pressures measured 24 (which is on the high side).  This year, her pressures measured 17!!!  Woohoo!  What a great improvement.  We'd love for her to be under 15, but I'm totally happy with 17, all things considered.  He will give me a detailed report in a week or so.  But, I think he said that her lung numbers were the same as last year.  But, overall, her sats were higher today than last year.  Which totally makes sense considering she was on oxygen last year, and she's not now.

Yesterday I took her to her pre op appointment with her pediatrician.  He said she looked the best he has ever seen her.  Her social worker and doctor said the same thing today.  She really is doing fantastic.  She's energetic, playful, and engaging.  She's a completely different kid than she was last year at this time.

As hard as it was to make the decision, and accept that she shouldn't attend school, I think it paid off.  She's the healthiest she's ever been.  I can't help but think that everything is related.  Now I am so glad we did it.  I still wish we could have it all - health and school.  But, when forced to choose between the two, I'd choose health every time.

So, a great report!  I'm happy.  And, even though she's not allowed to bend at the waist (for six hours following the heart cath), Harlie's happy, too.


Her nurse bandaged up Mikey just like her.  So cute!  She's asking for water and TV.  So, all's well!  We will stay overnight and head home sometime tomorrow.

And Kelly shared this pic of Murphy from today...


I didn't even know he had a loose tooth!  Murphy and I went to his future middle school last night for a curriculum fair.  He has an elective and can choose between a few things.  So, he talked to some girls who are in chorus now.  They were so darn cute!  And very excited about chorus!  One girl said, "You get to go on field trips to Kings Dominion!"  He said, "I like what I'm hearing." He cracks me up.  He also listened to a girl from strings, and the band teacher.  He said "no way" to foreign language.  I think he's leaning towards band.  I can't believe he's going to be in sixth grade next year!
Anyway, that's it for tonight.  Thank you for all the love today!

Much love,
~Christy xo

Sunday, February 1, 2015

My dream.

I had a dream last night.  It's been on my mind all day.

I was in a children's hospital.  I don't know which one (we've been in four).  But, in the dream, somehow I got separated from Tom and Harlie.  And I didn't have my cell phone with me.  So I couldn't call Tom.  And I couldn't remember why we were there or who we were seeing.

Was it her heart?  Her lungs?  Her back?  Her GI system?  ENT? Craniofacial?  Infectious Diseases?

So many departments!  How was I ever going to find them?

I was just walking around the hospital, feeling so overwhelmed.  And LOST.

And then I walked into a waiting room (I have no idea which one) and I saw my dear friend Susan, her husband Steve, and their daughter, Ainsley.  They live in Washingston (the state) and if we were to ever be in the same area, I hope we would know about it and we would see each other.  So, the likelihood of us just running into each other is highly unlikely!

The next thing I know I am waking up from a nap in a hospital chair, thinking, "Why am I sleeping?  I need to be finding Harlie and Tom!  But, I'm SO sleepy!"  The chair.  The hospital blankets.  So incredibly familiar.

Then I woke up.

At first, I thought it was funny.  But, after just a few minutes, I realized it made me sad.  It's sad that there are SO many departments that we have to deal with.  It's sad that there are so many doctors, so many hospitals, so much history.  IN. JUST. EIGHT. YEARS.

I wonder if having this dream has anything to do with the fact that on Friday, I got her date for her heart cath (scheduled for next Friday, Feb. the 6th).  It will be in DC.  As much as I want to be able to stay here for as much as we can, I just don't think I'm ready.  I'm afraid to make a change where a change isn't absolutely necessary.  It's kinda brainless going to DC.  I know it.  I know where she'll go after the cath (the heart and kidney unit).  It's "the floor" for cardiac kids.  It's where she'll go if she doesn't have problems and doesn't need the ICU.  I know the rooms have a TV, with movies and a remote control.  And they have a bathroom with a shower in the room.  It's comfortable for her AND for me.  There's also a playroom right down the hall for your kid to get toys, games and books to play with while they're in the hospital.

These are not things we would get if we stayed here.  There is no heart and kidney unit.  There is no "floor" for Harlie.  If she's not in the ICU, she would be in the Progressive Care Unit, which is one big open room with patient beds separated by curtains - and it's horrible.  It really is.  I mentioned the remote control earlier because you are lucky if you get one when you're there.  And you still have to hear the television in the spot next to you, just inches away, separated by a curtain.  I swear one time, the parent next to us was watching Jerry freaking Springer at 11pm.  I wanted to kill myself.  I've heard other parents burp and fart.  All while hearing children cry, cough, throw up - and every beep on every monitor or piece of equipment in the entire unit.  It's enough to make a mom go crazy.

Please know I'm not talking about the care you get while there.  I love our local hospital and our doctors.  But, that particular unit's environment is horrible.

So, I stay when I can, and I go when I have to.  And that leaves us without a "home" hospital.  Which kind of explains part of my dream.  Sometimes, it hits me hard just how many challenges Harlie has to live with.  Even while I'm sleeping.

Much love,
Christy xo