Thursday, July 29, 2010

Follow-up appointment

Today, we had Harlie's follow-up with her cardiologist here in Richmond.  It went well.  They did an echo (sonogram of her heart) and it looked good.  She is still breathing pretty heavy, but she doesn't appear to be getting any worse.  

She weighed 33 pounds - 3-4 pounds more than prior to surgery.  I knew she still looked a little puffy!  There is NO way that she has gained that much real weight.  It is all fluid.  So, he upped her Lasix to three times a day (from twice a day).  We'll try that for a week or so and see how she does.  

Her sats (oxygen saturation levels) were pretty low - 76% (98-100% is typical for a healthy person).  Hopefully they will get better soon.

We go back to see him in three weeks.  

She is still sitting on the couch for the most part.  And she is still mad at me.  Or maybe she's just mad in general.  She hasn't even been nice to Murphy or Cooper, either.  She flat out refused to tell (sign) Cooper night-night.  And that is so unlike her!  I know I have to be patient.  She will bounce back.  She will just do it in her own time.  


Tuesday, July 27, 2010

Recovery Update

Harlie is doing well, all things considered.  Each day she shows another small improvement.  

I saw her smile yesterday with her nurse, Brandy.  She's clearly still mad at Tom and I, because she doesn't want to smile with us.  But, last night after she was in bed, I went upstairs to check on her and we played a little bit like we used to and she gave me a smile.  She still won't sign that she loves me.  So, while we were playing I took her hands and "made" her sign it to me and she actually laughed.  I made a big deal of saying, "oh thank you, Harlie"!  And she seemed to get the humor of it.   

Here is a picture of Harlie showing Tom her new beads.  Children's National Medical Center in DC has a Beads of Courage program for their cardiac kids.  She earns a bead for certain things (like getting a chest tube put in, heart surgery, ivs, etc.).  I'll have to show you more about it later.  Here's the post when I first wrote about it, but the links don't work anymore.  She earned at least 30+ beads this trip.  And some of them are glass beads and they are beautiful!

Here's her in the stroller getting ready to leave the hospital.  Her happiness was more subtle than I expected.  No smiles.  But her eyes lit up and we could tell she was happy. 

She seems to be able to stay off oxygen during the day.  She was on it for the first couple of days, but it looks like she's okay now.  We are just spot checking her throughout the day.  If she stays on the monitor (which is wrapped around her toe) she doesn't want to get up and walk around.  So that's why we're spot checking her.  

She still hasn't walked around too much.  Just from the couch to the DVD player to put in another movie.  She's even taken some naps on the couch.  And this girl hasn't napped in years!  

There have been a couple of times she has made me hurt.  She doesn't want to take a bath.  She just shakes her head "no" and when I insist she hangs her head and cries in silence.  Then she holds her shirt down so I can't take it off.  Ugh.  She kills me.  And she loves her baths!  Well, she used to anyway.  I'm sure that will change in time, I guess for now she feels vulnerable without her shirt on?  

She scratched her incision the other day while she was about to get in the bath.  She looked down at her incision and just started to cry.  I can't imagine looking down and seeing that kind of boo-boo.  It must look so scary to her.  And it must still hurt.  

She still doesn't want to cough.  So her secretions are still a problem.  They are very thick and it is difficult to get them out.  Not to mention that she pushes us away most of the time.  And that is something that she's never done before.  She's always been very cooperative with suctioning.  

A small step showing us that she's getting back to herself was when she pulled away the trach collar for us so we could suction her.  I do think that even though she's fighting us sometimes, she does still remember that she needs it.  

I have more to tell you, but have run out of time.  I took a couple of days off from my computer, but hopefully will be able to get back into the swing of things and blogging more regularly again.

Thank you so much for all your support!

Saturday, July 24, 2010

We are Home!

Just wanted to let you know that we made it home as planned.  I will write more about it later.  Harlie is happy to be home, but clearly, she is still recovering.  We had to keep her on oxygen all yesterday while she sat on the couch and watched movies.  Her respirations (the number of breaths you take in a minute) are high and she's had a few fevers.  Not sure what's up with all that.  

Hopefully she will continue to recover and get better.  And soon.  It is a little worrisome to see her breathing like that.  

Well, I'll have to write more later.  Thank you again for all your support!

Thursday, July 22, 2010

Good News!

We are going home!!! 

They took her pacer wires out and she has to stay for observation until 5:30pm, and then we are FREE TO GO!!!

Harlie is SO over this hospital stay.  She is fighting everything - even suctioning, something she deals with all the time, all of a sudden is too much.  I think she is just trying to regain some control over her life.  Who could blame her? 

And she's had another rough day.  They removed her chest tube dressings and removed the sutures.  They said that the spots heal better without the sutures in there (not dissolvable ones).  And one of hers was already looking angry and red.  But, in just starting to remove the dressing, the nurse practitioner had to call in for reinforcements.  Harlie was fighting - and HARD! 

After that she took out the pacer wires.  Earlier she had the Holter monitor removed.  All the stickers everywhere have thoroughly pissed her off!!!  She hates those things! 

Then came the removing of her IV.  They had so much tape around it, that was agony!  But, once it was out, she felt so much better. 

Last night she made me a bit nervous (only in that I thought maybe our discharge today could have been threatened).  Her nurse didn't like her high blood pressures and her high respiratory rate.  So, she called the resident and after going over some things she guessed that she was probably just in pain.  Which really made total sense.  Duh.  So, they gave her some Tylenol and took her blood pressure a little while later, and it was fine.  Whew! 

I think she realizes she's going home.  Tom took the train up this morning and checked us out of the Ronald McDonald House.  When he came back up to her room she saw the stroller.  We haven't gotten her dressed yet, but that is going to happen as soon as I get back to her room after finishing this post.

I will have to go into more detail later, but the Holter monitor showed that she is staying in Junctional Rythm.  They said that right now it is fine and that she could possibly stay that way from here on out.  Or it could resolve itself in time.  Or her heart rate could start to slow down and then action would have to be taken.  I think a pacemaker would have to be hooked up if that's the case, but don't hold me to that.  This is new to her.  It began after surgery.  So, we will follow-up with her home cardiologist in the next few weeks and do another 24 hours on the Holter monitor.  Then I think she will have to go back for regular tests and exams until they determine what (if anything) needs to be done. 

Wow.  Post-op day 9!  I can't even begin to explain how I'm feeling right now.  The thought of going home and having the Fontan behind us is surreal.  And it brings tears to my eyes.  It is a relief I just can't put into words.  We made it and she is amazing. 

Okay, gotta go home!!!!  I can't wait to see her mood change!

Thank you again for all your wonderful prayers, comments, and support!  Being up here can feel so isolating.  Your comments and messages are so wonderful to receive.  Please know I am so, so grateful!!!

Much love,

Wednesday, July 21, 2010

Keeping our fingers crossed...

We got moved to the floor yesterday afternoon.  Unfortunately, there were no private rooms available.  At first it wasn't bad, because we didn't have a roomie yet.  But late last night, we got a roomie and it hasn't exactly been a fun experience.  
First of all, the baby is a newborn, just a few days old.  So, I knew we were in a for a long night with wakings for feedings every several hours.  Then as they were getting settled, I had to hear (no choice as I was in the room) all about the exciting delivery and the helicopter ride and that they thought there was a heart problem, but Thank God, everything is fine.  Not that I'm not understanding, mind you.  Really, I am.  It's just hard.  
It's hard because, oh how I wish that Harlie's first weeks of life were more friendly and loving for her - and us.  I wish that her heart situation could have been "just a scare."  I wish that we could have taken her home after just a couple of nights in the hospital.  I wish that we could have spoken about her birth and subsequent days of life with excitement and happiness and heard "congratulations" from every entering nurse and doc. I wish that I could have heard her cry and fed her every several hours.  I wish so, so many things - none of which matters, because it was not to be.  
Normally I am so much better about this!  But, for one, I'm not used to hearing a well baby discharge at a children's hospital.  And, I think it just hit me at the wrong time.  I guess I have moments where I'm not as strong and this was one of those times.  It forced me to remember those days and weeks and months and all the pain that I felt.  I don't like to think about that time period at all.  It was - by far - the most difficult time of my life.    
And those memories aren’t joyful.  Each day brought more bad news of things that didn’t form or work correctly.  And while that is true, thinking about Harlie’s birth in a negative way like that makes me feel bad.  In some weird way, I feel like it’s an insult to her.  
And the bottom line is that thinking about all that does me no good.  And we've come so far!  Why think about that anymore?  I am happy.  We are happy.  
It is now 4pm and our relieved, overjoyed roomies have been discharged.  The room is quiet and all ours for a little while.  We have a corner room with a great view of the Capitol Building.  And I’m starting to feel a bit better and less angry.  Good.  
Back to Harlie and how she’s doing.  She played in some water Tuesday afternoon.  She loved it.  But she is definitely weak and had a hard time holding up the container of water to pour it out.  Her hands and arms were all shaky.  That really made me realize that although this recovery has gone so well, it was still a heck of a shock to her system.  And she tired easily and had to stop playing.  It will probably take her a while to completely recover.

The big news is that she got her chest tubes pulled today.  WooHoo!!!!  They gave her some morphine a few minutes before to help ease the pain a bit.  And two nurse practitioners did it at the same time, which I think has to be better.

Here they are without the dressing covering them.  Pretty weird looking, huh?

This is what she looked like less than five minutes after they left.

This one is probably my favorite.

She slept like that for a solid four to five hours afterwards.  I considered waking her again, but decided to let her sleep.   

Each day she is getting less and less connected.  She’s been on room air most of the day.  They have done an EKG, Echo, and numerous x-rays.  I haven’t heard anything about any of them.  Soon they are coming to put a holter monitor on her.  That will stay on her until we get discharged - as of right now - that is “planned” for tomorrow!!
Tomorrow they will get another x-ray and if it looks good, then they will go over home care and her new meds and they will send us off on our merry way!!!
I just can’t believe how well this whole surgery and recovery process has gone so far!  Today is post-op day 8 and the thought that we could go home on post-op day 9 is just crazy to me!  
This post has turned out to be very long - but I've been working on it periodically throughout the day.  Please keep your fingers crossed that her morning x-ray looks good and clear and that we get to go home tomorrow!

Thank you so much for all your thoughts and prayers and words of support and encouragement!

Tuesday Night's Post

I wrote the following post Tuesday night, but lost my connection before I could finish.  I'll write another update when I can....

Wow.  Lot's of changes (good, don't worry) around here today.  She got her right atrium line out and her arterial line out today.  And then was moved out of the CICU into the Heart and Kidney Unit (HKU).

One of her chest tubes gave us some trouble today.  It got a hole in it, which breaks the seal (not a good thing).  So, they worked on that for a little while.  I suggested they just pull it (pretty much joking, but thought I would throw it out there to see what happened).  But they said no.  However, they did say that it's possible they could be pulled tomorrow!

I have been watching the drainage all day to see how it's doing.  And I'm trying to keep my excitement in check.  It has hardly drained at all!  So, if her x-rays look good in the morning, then perhaps they will pull those suckers out!!!

IF that's the case, then I think she has to hang out here for another day or so, get another x-ray and then, IF all is well, she could go home!!!  And I know I shouldn't be getting ahead of myself... but, that means it's possible we could be going home on Thursday!  Ugh - I hope I didn't just jinx us!

Now that we are on the floor, I am less comfortable leaving Harlie to go run, go downstairs, run errands, or to go to sleep at the Ronald McDonald House.  So, I'm already feeling some stress about that.  I keep telling myself that it might be for just a couple of days, and we can do anything for a couple of days, right?

But, I must admit that going to the RMH to get my stuff to sleep here and stay for a few days, made me sad.  My routine for the past week was comforting in a weird way.  Being able to leave the hospital at a decent time (7 to 8pm) and know that Harlie was well taken care of by wonderful nurses that sat with her (or within eye sight of her) when I was gone, allowing me to go to a place where I could rest, was really quite wonderful.

But, being here means progress - and some of the speediest we've ever had - so I'm thrilled about that!  If we get to come home on Thursday, I will be the happiest person on the planet!!!  And so will Harlie!

We did get some visitors today, and that was nice.  Harlie wasn't very hospitable, though.   It's kinda nice to know she's crummy to everyone equally and that it isn't just me that gets it.  A huge thank you to Kevin Smith, Jennifer, Brandy and Mrs. Katie (Harlie's preschool teacher) for coming up to visit today!  I know it is not an easy trip to make and we (okay, I) am very appreciative!  They all brought goodies which was wonderful!

I have more to write but the internet connection here is spotty at best.  So, I'll post more later when I can.

Thank you so much!

Monday, July 19, 2010

Post-Op Day 6 pics

This afternoon we got her up and walking!  It only took an hour or so to get her ready to walk, we walked for about 3 minutes (traveled about 15-20 feet) and it only took an hour or so to get everything back to the way it was before the walk.  


I don't know who was more tired, Harlie or her nurses!!!  And she caused quite the show in the CICU.  So many people came out to cheer her on.  It was so cute!  Her social worker went and got a stroller with a baby in it to motivate her to walk and it worked like a champ.  She was really motoring there for a second!  But then she stopped and wanted to sit down.  Hey, baby steps.

We were all thrilled with how she did, though.  And, in fact, her doc said he was not expecting her to walk that far and that I should probably carry her back to her room.  It was pretty funny.  I think he actually labeled her a "rock star."

Then she sat on my lap and watched most of a movie.  

However, it was VERY hard to get her up.  She was sleeping for several hours and I had to go in and wake her.  And let me tell you that was HARD!  The VECTA was on (the coma inducing machine lit up in the background of this pic taken days ago):

and the music was playing and it was all warm and cozy in the room.  All things that make you want to go night-night.

So, I forced myself to go unplug it and put it off to the side.  Then we turned the lights on.  Then we changed her diaper and I adjusted her bed to the sit up position.  There.  Wake up sleepy head and let's get outta bed!

I promise you, some things I do seem to take super human strength.  And waking a sleeping, post-op little girl with lots o' tubes coming out of her body and forcing her to walk - well, let's just say I've done easier things in my life.

But, it had to be done!  She needs to get better.  And I heard a rumor that most kids post-op day 6 would have already been out of bed.  Harlie can't have different rules!  No special treatment for her!  Even if she IS the most stubborn girl in the unit!  And possibly the funniest and cutest, but I don't think those attributes are relevant to this story.

Perhaps tomorrow I can get her to the play room.  We'll have to see.

Unfortunately, some time after her walk, she spiked another fever.  Ugh.  Hopefully tonight she will sleep well and tomorrow can bring even more progress!

Thank you for all your continued thoughts and prayers!!!

Post-Op Day 6

I have great news!  She is doing SO much better today!  I knew for sure she had taken a turn for the better when I suctioned her this morning. 

I had to use a saline syringe to put saline in her trach to help loosen the secretions.  She hasn't much coughed in the last few days and so it was really thick.  Well, after I did it once, Harlie wanted to squirt the saline in herself.  And she wanted to help suction, too.  She is just so funny, that girl! 

Here's how things are looking today:
  • Her white blood count was 20 today, down from 26 yesterday.  So, that's great!
  • She's back on trach collar now and they are going to let her stay on it as long as she can handle it.
  • The oxygen was turned down to 40% from 75% yesterday (it was at 100% on Saturday).  Room air is 21%.
  • Her x-rays look better.
  • Her chest tube -drainage is slightly less than yesterday. 
  • She went without Tylenol all night (first time since surgery), however her temp started to go back up this morning, so she had to give her some then.
  • Her night nurse said that she slept for a solid eight hours straight last night.  So, that is great! 
So, as I had hoped, I got to give you a great, positive post today! 

Now I am heading back to her room to get her up and walking about.  The doc said that she might have a lot of drainage after that, so to not be alarmed.  He also said the median time to leave the chest tubes in is about eight days, give or take.  We are on day six. 

At this point, we will hope that the drainage stays serous in nature - and doesn't turn into a chylothorax.  If the fluid coming from her chest tubes starts to turn white and milky looking - I will be very sad and will let you know.  Basically, if that happens, we will be here for an undetermined amount of time, waiting for the chyle to stop draining.  She had that happen after her second heart surgery, the Glenn, when she was six months old and it took eight weeks to stop. 

So, all in all, a great day so far!  She definitely looks better and happier.  She is protesting more, which is a great sign.  And she is sitting upright watching movies today. 

Well, I have to run.  Her nurse is probably wondering where I am. 

Thank you for all your support!!!!

Sunday, July 18, 2010

Post-Op Day 5 pics

Here's Harlie watching tv today.  She looks like she feels a little better.  Although that's the position she was in all day.  When I left tonight I said and signed "I love you" and then she just looked away.  Ugh. I know she will forgive me eventually.  Like when I take her home.    

Here's Harlie sitting up when the physical therapist came on Friday.  She was NOT a fan.  And who could blame her?!

It was after 8pm when I left the hospital tonight.  She had the same night nurse that she had the past two nights.  That always makes it easier for me.  I know that Harlie already knows her and that she already knows Harlie.  Although it is both good, and sad, that Harlie is so comfortable in the hospital.  And what I mean by that is that she isn't scared.  I guess she knows she's being cared for and that she's safe.

I was hungry and tired when I left.  And I had no food.  So, I got to the Ronald McDonald House (RMH) and there was a hot meal sitting on the table!  Yummy soft tacos with all the fixings and brownies for dessert.  It was wonderful!  The girl that works here said that this family comes and makes dinner once a month for the families here.

So, if you're ever in the mood to reach out and do an awesome thing - don't forget the Ronald McDonald House!  They only charge $10 per night (and less if you can't afford it).  The house here has 16 rooms.  But they are building a new 26-room house just around the corner.  Each room will have a private bath!  Woohoo!  And the opening is scheduled for October.  Pretty exciting!

Okay, hopefully the next post you read from me will be me raving about how great Harlie is doing.  Thank you so much for all your continued love and support!  It makes such a difference to me!


Post-Op Day 5

Not much has changed today.  I do think there was a small improvement, overall.  Let's see...
  • They did a two-hour trach collar trial today.  She was on CPAP with pressure support for more than 24 hours.  So, they took her off and let her be on just the trach collar (letting her do all the breathing on her own) for two hours.  Then they put her back on CPAP with pressure support again, and will leave her on it overnight. 
  • She has two chest tubes that were draining into the same container.  They separated them so that they drain into two separate containers.  I guess they want to see if one side drains more than the other.  Personally, I don't see where it matters, as I believe the drains are coming from her chest cavity, and isn't there only one of those?  But, I wasn't part of the discussion to do that so I didn't get to hear the reasons why they thought it was worth doing.  And it doesn't bother her at all, so I suppose it's fine either way.  She's still draining a lot. 
  • She pooped.  So that's great.  Her belly looks much better and I am sure she must be way more comfortable. 
  • She's still febrile and the cooling pad turns on/off all day.  I noticed that she would shake/shiver periodically.  So, they turned it off for a little while.  We'll see how that goes.
  • She must be feeling a little better because she's been watching movies all day.  Of course, she's laying down to the side so she's not looking at the tv straight.  I don't know how she can watch it like that, but she doesn't seem to care or want to move, so I'm letting her be. 
  • Her white blood cell count was 26 this morning, down from 29 yesterday.  So, that's good. 
  • They took her off Vancomyacin today and put her on Bactrim (I think).  So they must have gotten some information from her cultures.  But, I haven't seen a doc today, so I haven't heard the details. 
Overall, I do think she must be less miserable than yesterday.  She refuses to sit up and is still not interactive or communicative at all.  Although she did actually pick a movie from two choices, so that's an improvement. 

Oh, and they moved her into a private room today.  I asked why (I didn't ask for one) and they said that since she has a parent bedside, and she needs to get some rest (which is even harder with three of everything buzzing all night) and the little babies don't care if they are in a private room or not it just seemed right to move her.  The only negative to the private room is that it is a long and narrow space, so the chairs are behind the patient's bed, so she can't see me when I'm sitting.  Other than that, it's fine.  Although, I must admit, I miss the banter between the nurses and, well, me.  But, I'll survive.  If it's what Harlie needs to get some good rest, then it is a good thing.  And she's been awake most of the day (another sign that she must be feeling a little better) so hopefully that means she'll sleep good tonight and then get on a normal sleep pattern. 

Her nurse last night gave her a bath and then they braided her hair.  I love it when they do stuff like that.  It's so darn sweet. 

Well, that's it.  Hopefully tomorrow will bring even more progress.  Thank you, as always for all your thoughts, prayers, comments and messages.  You are wonderful readers! 

Saturday, July 17, 2010

Post-Op Day 4

I'm going to try to be quick because I want to get back in her room.  But, I also wanted to give you an update. 

Unfortunately, Harlie has taken a turn for the worse.  And pretty much in every area.  And while I can't be as positive as I would like to be (in my writing, I mean) I am not overly worried.  Yet. 

Here's where things stand:
  • She's back on pressure support (for breathing).  She was on normal trach collar for a while, but she just couldn't handle it long-term. 
  • She is taking a lot more breaths per minute, which is not a good thing.
  • Her x-rays today look worse than yesterday's, with more hazing in her left lung.  They are treating her for pneumonia at this point, until the respiratory cultures come back with a more specific growth.  They are hoping that the pressure support will help get air in the area that appears to have collapsed.
  • They've added another IV antibiotic - so she's on two now.
  • She hasn't pooped.  At all.  And her belly is distended (hard and swollen).  They have been giving her something to help with this for days now.  Seriously - 4 doses of Miralax, 6 doses of colace, 4 glycerin suppositories, and 1 enema.  They are stumped.  We turned off her feeds and are giving her another six hours (from 11am) to give her another enema. 
  • Her blood pressure is down (not good and her non-pooping status probably isn't helping).
  • Her heart rate is up (over 170s).
  • She's on 100% oxygen and maintaining sats of only 80 (a normal person has sats close to 100). 
  • And she went back into junctional rythm, but this time it affected her blood pressure and heart rate.  So, they are watching that closely.  Still haven't turned the pacemaker back on, so it must be okay.
  • And her chest tube drainage dumped a lot of fluid over night - a large increase as it was beginning to taper down yesterday.  So that's a bummer.
  • Her white blood cell count was still 29 this morning.  Bad that it didn't go down, but good that it didn't go up, either.
  • She's still febrile on/off and the cooling pad is what gets her down, but after a while of it not being on, her temp climbs again.
I think I mentioned that one of her atrium lines was stuck.  Well, I got to hold her in my lap for a while yesterday, so maybe the moving around from the bed to my lap, etc. loosened it because when the surgeon came, he tugged and it came right out.  So, that's good.

I really do wish I had more a positive report for you.  She is truly miserable and hasn't really been awake since Thursday.  She tosses and turns every minute it seems.  Hopefully today will bring us some good movements (if you know what I mean) and hopefully that will start a good chain reaction. 

As always, I'll do my best to keep you posted.  I know some of you may be worried about me and my spirit.  But, I really am doing okay.  I have managed to get in all my training runs in the early mornings and even my long run today (a recovery week, so it was a short 5) and perhaps that has helped with my spirit and stress.  Plus, I have loved all of our nurses and laughing with them has been healing, too. 

Although last night one of Harlie's roomies (there are three patients to a room in the pod we're in) passed away.  She was three months old.  It was really weird to think that she passed just 10 feet away from where we're standing.  And the other little baby has been alone every day.  Not that I'm judging his family, because who knows what's going on there.  But, both patient situations made me want to crawl in bed with Harlie and hug her tight.  Harlie is so dearly loved.  And we are so blessed to be a family. So, don't worry about me. 

Thank you again for all your support and prayers. 

Much love to you all from DC,

Friday, July 16, 2010

Post-Op Day 3 Update

So, Harlie is still febrile and miserable.  I was told that she hardly slept throughout the night.  Just little cat naps here and there.  That tells me that she just doesn't feel good, or hurts.  Or maybe all the drugs and medications are messing with her.  I don't know.  The good thing is that she seems a bit more restful today - but only a bit. 

When they rounded on her this am they said they wanted her sitting up and/or walking.  They want to get her to take deeper breaths.  They are assuming she's splinting, which means that she's taking shallow breaths to avoid the chest pain that probably comes with breathing deeply.  And that's not good for getting stuff out of  your lungs.  She's on a lot of oxygen.  When we moved the chair next to her bed so she could sit on my lap, they had to disconnect her trach collar for a minute.  Her sats went from the 80s to 51!!!  And that is NOT good. 

And it was hours into the morning before she coughed for the first time since I arrived.  When the nurse suctioned her it was terribly thick and red and brown.   So, I think it's pretty safe to say that's where the infection could be brewing.  Oh, and her white blood count has risen to 29 (supposed to be somewhere around 5-10) and a little high is normal post-op.  So they have put her on an additional breathing treatment, called Tobramycin. 

They want to start her on another antibiotic, Cephalexan. But, that is the one that we thought caused her months of hives December through January.  The doc attending said that months of hives, in his opinion, is not an allergic reaction to a drug.  I told him we went around and around with this months ago, and it was the only thing she had gotten different.  However, if that med is the best to treat what she's got brewing, then I was agreeable to trying it again to see what happens.  Hives vs. infection - I'll take hives, thank you.  At least they are somewhat treatable (in most cases).  And Zyrtec worked for her last time.  So, he called infectious disease and they are supposed to come and talk to me I guess. 

The cardiovascular (CV) surgeon fellows came to pull one of her atrium lines.  There are two - one in her left atrium (LA) and one in her right atrium (RA).  They are like an IV in that they can pull blood out and deliver meds, etc.  I think I have that right.  Anyway, they tried to take one out, but it is stuck.  So, they had to call the CV surgeon attending to come and try (as of 2:15pm he hasn't been by).  They don't want it to snap (break), leaving the line in on the inside of her heart.  Although, I think if that were to happen, her heart cath doc would have to go and fish it out.  The CV fellow said that since it is still working, means it is still in her atrium, which makes it more dangerous if it snaps.  I must have had a worried look on my face, because he was very sincere and told me that they would take care of it and that I shouldn't worry.  So, good.  I'm not going to worry.  And I'm not being sarcastic.  I'm really no longer worried.  You don't have to tell me twice. 

As far as her fever goes, they put some cooling pad thing under Harlie and she has to lay on it, which is probably not very comfortable.  But it is hooked up to a machine that makes the pad cold and monitors her temp.  It has been off and on all day. 

Oh, and they changed her dressing over her incision, and she barely fought.  Which is a real indication of how crummy she must feel.  She is a fighter, that girl.  But, today she's fighting on the inside.  Which is what is needed right now. 

So, needless to say, she will stay in the CICU for a little longer. 

That's it for now.  Thanks for continuing to keep Harlie in your thoughts and prayers!

Thursday, July 15, 2010

Post-Op Day 2 Pics

Well, it looks like I spoke too soon.

She has been febrile all day, and her temp starting climbing in the late afternoon.  That's not such a big deal in itself, but she definitely was miserable.  And that was the true change.  She stopped fighting everything and lost her spunk.  Which is never a good thing.  And it's weird - it didn't even spike that high - 102, I think.  She's had way higher fevers with less impact on her spirit.  But her skin was on fire and she got really, really sleepy and stopped watching tv and didn't even want to look at the VECTA distraction machine.  And she loved it the last time she was in (for her heart cath last month).  The VECTA's in the background:

Her nurse was great and was very concerned for her - health-wise and comfort-wise.  So she put a bag of ice in a towel and put in under Harlie's back to help cool her off.  Then she put cool, wet washcloths on her head and arms.  And the whole time she was messing with her doing that, Harlie didn't move a muscle!  That is SO not like her!

After I updated the blog this afternoon, the docs came by to check on her.  They said her work of breathing was looking worse.  And they took more x-rays.  Her left lung looks hazy, so they are a little concerned about that.  So, they were thinking that they would put her back on CPAP for the night to give her a little break and let her rest, and help that left lung inflate more fully.

She also lost her IVs today, which is unfortunate.  They still have access through some lines that go into her heart, but I don't think those are ideal for everything.  And I think they want to pull them pretty soon.  So, they are going to have to get another one tomorrow.  Since she was feeling crummy and it isn't critical to have that access now, they are going to deal with it tomorrow.  And that will not be fun, let me tell you.

I forgot to tell you that she has been retching a lot today.  She was doing it a ton this morning, so they gave her some Zofran and that helped a lot.  By the late afternoon, when it was time for the next dose, she started retching again.  At least the Zofran seems to work on her.

Oh, and a trach care/wound care nurse came by to check on her today, too.  They were getting a little concerned about the amount of blood coming from her trach.  And the top of the dressing at the stoma/chest incision line was getting more soaked with blood.  They just didn't understand where it was coming from.  So, they got her cleaned up a little to see what was going on underneath.  There was only a very tiny little cut near the stoma, which we're thinking was where the intubation tube was sutured.  Hopefully that will heal pretty quickly.

So, we'll see how she does throughout the night.  Hopefully after a few doses of the antibiotic, she will feel better.  At this point, I doubt she'll get moved to the floor tomorrow.

So, please keep those thoughts and prayers coming!
Thank you so much!

Post-Op Day 2

She's awake!  She woke up right as we got in this morning.  It was so great to see her reaction to waking up and seeing us first thing.  She saw me first and then looked around looking for Tom.  He was supposed to leave last night, but extended his stay since she had not woken up yet.  Definitely worth him sticking around for that! 

She is really, truly doing great.  Way better than what I expected.  Which is how I would prefer it go down anyway! 

Here's what's going on:
  • She's being weaned off most of the drugs and being switched over to pain meds through her g-tube.  And they are starting her home regimen of meds.
  • They started her on slow, continuous feeds last night.  They are upping the rate per hour every six hours to get her used to having food in her belly again. 
  • They took out her foley catheter (pee tube) this morning.
  • Her white blood cells were higher on her last blood culture, so they took some trach, blood and urine cultures to see if any of those are the source.  And they put her on vancomycin just to be on the safe side.  All those tubes can be sources of infection, so they will start to pull them as soon as they can (which is why they pulled the foley). 
  • She's on her normal trach collar (heated and humidified air only) with lots of oxygen - but no breathing support.  So, she's completely breathing on her own and appears to be doing well.
  • She is coughing up blood, but that's not surprising.  She is requiring a lot of suctioning, but that doesn't surprise me at all.  She hasn't really coughed in a few days, so she's got some junk to get out after laying down and not moving around for a few days.
  • They turned off the external pacer again.  They are trying her off of it to see what she does.  She is in junctional rythm (which means the communication between her atrium and ventricle doesn't always work right). It can be intermittent or it can stay that way.  They said that one can live in that kind of rythm for a long time.  So, I guess it's not that big of a deal.
  • I spoke with her heart cath doc today and he said that she will need another cath in a year or so to look at closing the fenestration.  Again, I'll go into more detail about that later. 
Overall she looks really good.  She is less swollen than yesterday, which surprised me.  Her drainage amounts are within a normal range.  She has not signed yet and doesn't appear to want to communicate in any way (including her device, which she shewed away rather aggressively, I might add).  We asked her if she wanted to watch a movie, to which she completely ignored us, in typical Harlie recouperating fashion.  We started the movie anyway and she seemed to be enjoying it.  We then told her we were going to lunch and she wouldn't look at us.  Ahh, can you feel the love?  I'm thinking she'll be mad at me the rest of her stay.  She will probably begin to forgive us when we put on her shoes and we leave.  Until then, it's "abuse my wonderful, selfless, mother who has dedicated the past 3.5 years to helping me be the best I can be" time. 

It's so great to be me. 

In all seriousness, I really can't believe how well things are going.  I was way more scared than I let on (well, maybe not).  I much prefer getting beat up by her than worrying about her surviving another brutal surgery. 

The Plan:
  1. To keep her on trach collar for as long as she can handle it.
  2. To wean her completely from Dopamine and get her back on her normal meds.
  3. To keep her off the external pacers (that keeps her in the ICU). 
If all that happens okay and lasts through the night, I think they will send her to the floor (heart and kidney unit) tomorrow.  And for the first time ever, I'm actually okay with that.  The HKU definitely has it's benefits (assuming we get a private room). 
She will keep the chest tubes in until they deterimine its safe to pull them.  And once that happens, she can go home.  But, we're not even talking about that yet, of course.

Okay, you are all updated for now.
Thank you for all your support!

Wednesday, July 14, 2010

Post-Op Day 1 Pics

Here are the pics from today (Wednesday):

The patch on her forehead is something that measures the oxygen level in her brain.  And, I'm happy to report that she is normal.  And that's normal for a "normal" kiddo - not normal for a kiddo who just had heart surgery.  How your body can be oxygen deprived and still function and your brain be within normal limits astounds me.  Crazy bodies, we have!

Some of her meds this am:

This is the ENT team changing her trach.  It went beautifully.

Ahhh.  Resting comfortably on CPAP and with a tubeless mouth.

She's really doing very well.  We are so pleased with her recovery so far.  Tomorrow the plan is to take her off CPAP and put her back on trach collar.  That will be great.

Okay, that's it for now.


Post-Op Day 1

Sorry I haven't been able to update all day.  I hope you believe in "no news is good news."  Getting to a computer lately has been a true challenge.  I hate to knock on the hospital (it has many good points that we love) but it is a little slow on the wireless uptake. 

When we were waiting during surgery we were told that we would have internet connection on this floor - in the CICU and the HKU (heart and kidney unit - once she steps down to the floor).  But, that isn't exactly true.  Upon further investigation - there IS wireless.  However, there are only a limited number of people allowed on it at a time (what!?!?!?!?) and it only reaches so many feet from the nurses station.  And guess what?  Yep, you got it.  We are just outside that range. 

I mean, what gives?  How hard is it to provide wireless to more than a few people within 20 feet?  Technically, is that even still considered wireless? 

So, in order to update you (my family and loved ones) during a stressful time in my life, I have to use a computer provided by the hospital.  There are several in the library (open 8-5) and three in the family waiting room outside the CICU, PICU and HKU (that's a lot of beds, in case you're wondering).  And they offer three whopping computers - one of which isn't working.

As far as the library is concerned, that's where I've used the computer every time since Harlie's birth.  I have never had a problem getting on a computer.  Until this stay.  I couldn't get on one for hours yesterday (from either location) or this morning.  And it is a far walk to get there - so it gets pretty darn frustrating real quick.  I asked the librarian if there were less computers than there used to be.  Yes, they used to have 25 (I think).  She said that they took a survery and that the most that were being used at the same time was 9.  So, they downsized to 7 computers.  ????  She said that they are getting new ones any day now and there should be a total of 12. 

I wish they would get wireless like most other hospitals - that way I could stay with Harlie while I update, which would be wonderful.  And way less stressful.  Plus, I could upload photos.  So, I'll have to upload the photos when we get back to the Ronald McDonald House.  But, she looks good.

Anyway, enough of that...

Harlie is doing well.  At around 2pm ENT came by and removed the intubation tube from her trach stoma and put in a regular trach.  She looks normal again.  And the nurse also pulled the tube from her mouth (that went into her belly).  Overall, she looks very comfortable and is resting peacefully. 

They are putting her on CPAP now (which means she'll be doing more breathing on her own versus the machine forcing her to breathe).  Harlie definitely likes to breathe on her own and she always does better and is happier without the vent.  Plus, the positive pressure is actually bad for her circulation and heart issues.   So, we're very lucky that she doesn't need the vent for very long.

They are reducing her sedation meds so that she can start to wake up.  We'll see how that goes.  She's had a fever today, but that is totally normal post-op.  She's also starting to swell (most obvious in her hands and feet).  That is also totally normal and expected post-op.  Balancing fluid is an issue and a challenge after the Fontan.  I was told that post-op days 2 and 3 are usually the worst of it, though. 

She had another EKG this afternoon and there was some intermittent heart block (but nothing to be worried about at this time).  I think that's happened to her after every heart surgery so far.  It just takes a while for her body to adjust to the changes.  I think they decided to leave the external pacers on for now. 

So, that's pretty much it.  Not much to report on, really.  It has been a quiet day, which is great. 

As usual, thank you so much for all your thoughts and prayers!  Clearly, they were heard!  Things are going way more smoothly than I was anticipating. 

Much love,

Tuesday, July 13, 2010

Post-Op Pics

This is going to have to be quick.  It is late, and I am super tired.  But, I wanted to tell you that she's doing well.  Here are some quick pics...

Pre-op (obviously)...

Playing with her iPod Touch, waiting for them to take her back to the OR.

Here she is several hours post-op.  I keep thinking that the chest tubes get smaller with each surgery.  But they are the same, she's just getting bigger.  Those chest tubes will stay in until the drainage tapers down - that time period is different for everyone. 

The tube in her mouth is a new one for us.  It goes to her belly and is on a low, constant suction.   

Here is her equipment.  And yes, all those pumps are on and running!  It's really not as bad as I expected.

This trach is a new one for us, too.  Personally, I think it is damn scary!

Her nurse agreed.  She said that they assured her that it is sutured in and secure.  But, her nurse has had her before and clearly remembers how hard it was/is to keep her sedated (she sat up just hours after her last heart surgery!).  So, she's pretty nervous that she's going to wake up and just start yanking stuff out. I can tell you one thing - I don't want to see it if it happens and I don't want to have to suction that!!!

ENT is going to come by tomorrow and take that one out and get her back on her normal trach.  She looks so different without it.  It makes me so wish she wasn't trached - and that is no way for me to be feeling when decannulation (getting the trach out) is not even on the radar.

We have seen a lot of nurses that we know and love.  They all let me know that they were looking for her (they saw her name on the schedule) and were excited to see her again.  Her nurse today told the night nurse taking over that her main challenge would be keeping Harlie comfortable and pain free.  She is so incredibly drug tolerant that it takes an insane amount of drugs to do the job.  She has already tried to wake up and move around, so they had to put some restraints on her.  I will be so glad when she gets her trach back and they can pull the tube out of her belly.  I think that will help with keeping her comfortable.

Okay, must go for now.  More tomorrow!

Now in CICU

She is out of surgery and they have transferred her to the cardiac intensive care unit (CICU).  We can't see her until they get her all settled. 

Her surgeon came out to tell us how the surgery went.  He said there were no surprises, which is wonderful.  He said the Fontan procedure itself went according to plan.  But since she has extremely dense scarring adhesions around her heart, he went on ahead and put in atrial pacemaker leads.  I hope I'm getting this medically accurate, as I am not able to google it right now.  But, I'll be close enough.

She already has leads in her ventricles (he put those in during her first heart surgery when she was four days old).  They did that in anticipation of her needing them in the future.  It is fairly common with her heart defect to have the electrical connection between the ventricles and atrium go haywire at some point.  Luckily, so far she hasn't needed the pacemaker.   But, if she does need it in the future, and he didn't put the electrodes in her atrium, then it would require another open heart surgery, and he would have to go through all that dense scarring, which can be risky (the scars bleed a lot).  So, he went on ahead and put them in, just in case.  Which I think is great. 

I forgot to mention that I asked him (yesterday during our meeting) about future heart surgeries.  I told him I am often asked if this will be her last one.  And the answer is that no one knows.  I think it's safe to say that eventually her heart "will run out of gas" (his words) and then she would need a transplant.  But, as far as surgeries to make her own heart better, only time will tell.  I think the odds are in her favor that she won't.  There are a lot of fixes they can do through heart catheterizations, so that's great. 

Back to our conversation today, he said she will need the fenestration (I'll have to explain this better later, as I'm in a hurry, and not at a good computer) to remain open to help keep the pressures down.  So, unfortunately, it could be a year before her oxygen saturation levels start to show an increase.  This makes me sad in that her fingers and toes are already clubbing, and the longer she goes with low sats, the worse it will get.  I know this bothers no one else, but one day it will bother her, and it is a daily reminder for us that her body is essentially oxygen deprived.  Which just makes me hurt. 

However, I am ELATED that there were no surprises and that she appears to have come through the surgery strong as ever.  It is hard to believe that the Fontan has now happened.  It has been hanging over our heads for years and I can't explain what it feels like (albeit only for like an hour) to say that she has officially had the Fontan!

Of course, her surgeon reminded us that the next several hours are critical - it will take a while for her blood to clot and for her circulation to settle in to it's new routine. 

Okay, must run back upstairs to see if we can see her now.  I have been trying to update you for a while, but all the computers were being used and there is not wi-fi in this darn hospital.  So frustrating in the year 2010!!!

Thank you again for all your outpouring of love and support!!!  We are so incredibly grateful!!!

On Heart Bypass machine now

Surgery started at 10:51am.

She went on the heart bypass machine around noon.

They will page us again when she's off bypass.

My older brother, Bruce, and his kids - Maggie, Kelly and Charlie - came to visit today.  We had lunch together, which was a great distraction for us.  Now we are headed over to the waiting room with them. 

More later!

And so the updates begin...

9:45am - they took her back to the OR.  They came in about 9:30 and gave her Versed and Ketamine through her g-tube to help her relax and forget.  She still cried when we said goodbye, which is always hard - especially this time around.  The worst is that she is so brave.  Really and truly - so brave.  She seemed to have accepted what was going to happen, and not to fight it.  Makes me thankful and sad at the same time.  The only thing we can do is tell her we love her and hope that she remembers that, no matter what. 

Surprisingly, we slept okay last night.  I forgot to tell you that Harlie fell out of the bed on Sunday night.  The floors are vinyl over concrete (easier to keep clean for transplant patients) - so I'm sure it hurt!  My biggest fear is her g-tube coming out, since she's hooked up to a night feed.  Luckily, she wasn't all tangled in it at the moment, so it was fine.

I managed to make myself get out of bed early and go for a quick three mile run.  I really think it helped. 

So, now we wait and hope.  I will try to update here as we hear how things are going.  They are supposed to page us when she goes on the heart bypass machine, and then again when she comes off. 

Thank you so much for your outpouring of love and support!
Much love to you,

Monday, July 12, 2010

Fontan Pre-Op Day

Pre-op today went well, I think.

She weighed in at 30 pounds and I think she measured 36.5 inches tall.  The first thing we had to do was get an EKG.  The nurse brought us a hospital gown and that's when Harlie got upset.

That was over fairly quickly, though.  And then came the torture of peeling off all the stickers.  They say it doesn't hurt that bad, but you would never think that based on her reactions.  She hates it.

It was very cool to be able to get urine for labs by taking her to the potty.  Last year they had to put a bag on her and that was a total nightmare.

Then they did an echocardiogram.  Her cardiologist said that there was some narrowing or something where her surgeon did the last surgery (he created another way for the blood to leave the heart).  But she said that it's mild right now and they would leave it alone and not try to do anything during the Fontan.  The risks outweigh the benefits.  So, we'll see how that goes over time.

Then we went down to meet with the cardiac anesthesiologist.  Then after that we went for chest x-rays and blood work. Both departments were super busy. But, luckily, our nurse practitioner (NP) who gets all this set up - came and got us to go see her surgeon, Dr. Jonas.  That went well.  Nothing new, which is good.  I feel like it was less stressful than last year when we sat down to talk about the Fontan (because we thought we were getting it then).  At this point, I'm not sure if I feel better about it, or if I just have my game face on.

The risks for brain damage or death is about 3-5% for the average kiddo getting the Fontan.  For Harlie the numbers are 5-6%.  They say that those numbers are high for them, but they seem pretty low to me.  Our NP said that I am the only parent who thinks that.  So you can tell my perspective is completely off - thanks to her previous 14 surgeries and all the odds she's beaten so far.

Mainly, the risks are excessive bleeding, infection (higher for her because of her trach stoma being so close to the incision), and pleural effusions.

We gave consent for the surgery and headed back downstairs for chest x-rays and blood work.  We chose to do the x-rays first, so we could leave the hospital the second they finished the blood work.  That way Harlie wouldn't be upset for the x-rays and we could somewhat reward her for the blood work by getting the heck out of there.

When she went into the x-ray room, she went straight for the chair where you sit for the x-rays.  She got right in with no complaint.  And when the x-ray tech asked her to raise her hands for the x-ray, she did exactly what she was told.  Then she got down and went on about her day.

Then we went for blood work.  That was a nightmare, as usual.  She sat on my lap in the chair and did so without a fight.  But when the tech got out the syringes and put on her gloves, Harlie put both of her hands behind her back.  The tech asked her if she was hiding from her.  It kills me to think about all the knowledge that girl has about unpleasant stuff.

They wanted to get three vials of blood, but they only got one and a half.  Her blood was so thick (since she's been off aspirin for five days in prep for the surgery) and they (the lab tech had to call for help) had to stick her several times.  It really is parental torture to have to hold her down to let them hurt her.  We just keep telling her that we are so sorry and that we love her.

After that was over we bolted to the car to go find something fun to do to reward her for a long, tiring day.  Tom said that he wished she could eat by mouth so he could give her whatever treat she wanted.  Instead we found a playground.

Okay, this picture doesn't do it justice, but there were these squirrels...

that are black.  And shiny.  And their fur looks softer and thicker than a normal squirrel's.  Weird.

Tom was playing around with the color accent setting on the camera and it came out like this...

In this picture you can see a little of my pink hair.  There's more under the top layer.

The playground also had a fountain area for the kids to run around in.  It had just rained when we got there, so we had the place to ourselves.

This was my view walking back to the car.  Is there anything more sweet than a daddy carrying his little girl?

There are some things that Harlie does that makes me so thankful.  Tonight at dinner she was playing with her Mickey Mouse and she did this...

Totally normal, I know.  But I don't take anything with her for granted.  Earlier, when we were leaving the Ronald McDonald House, she put Mickey on the slide, counted to three and pushed him down.  Make my heart melt!

After dinner we went to Target to get some Pedialyte for her overnight hydration (this is when tube feeding comes in pretty handy).  We were just walking around and just happened to go by the toy section.  She went crazy over all the Toy Story 3 toys.  But we left and she kept signing "dinosaur" (Rex from the movie) and pointing behind us, which told me that she wanted to go back to the toys.  So we did and Tom put her down and let her walk around and look at them more closely.

After looking around she went and grabbed a box with Jessie and Bullseye in it and threw it in the cart.  Oh, there goes my heart again.  Another totally normal thing that she's NEVER done before.  She never asks for anything - other than an activity (like watch a movie, go outside, etc.).  So, of course we bought it for her.  And, let me tell you something - if we were rich I'd buy her anything she wanted after a day like today and knowing what lies ahead.

We have to be at back at the hospital at 7:30am and her surgery is scheduled for 9am.  Her surgeon said that it took the anesthesia team two hours (which is very long) to prep her for surgery last year.  So, we are guessing that will be the case again this time.  Then the surgery will take about three to four hours.

I will, of course, update as I can to let you know what's going on.

Thank you so much for all your thoughts and prayers.  You have no idea how much that helps during times like these.  We are so very appreciative!

Sunday, July 11, 2010

Pre-op is tomorrow

This is just a quick post to let you know that we have checked in at the Ronald McDonald House in DC.  Harlie's pre-op day begins at 8:30am and will last most of the day.  They will  do some blood work, take chest x-rays, EKG, etc.  And lastly, we will get to speak with the surgeon.

I think Harlie remembers what being here means.  At first she started playing with the toys here, while we were unloading the car.  But, a few minutes into walking around she started crying a sad cry, and she did not want to play with any of the toys.  Once we got her settled into the room, she seemed to be better.  Plus, I think she was really tired, because it is now 11pm and she's only been asleep less than 30 minutes.

Traffic was a nightmare, so we didn't get here until after 9:30.  And it takes a long time to unload the car (since someone has to stay with Harlie the whole time, only Tom can go to the car) and get her equipment all set up.

They (the Ronald McDonald House) really hooked us up this time and gave us the best room we've had so far (and we've had a lot of rooms).  It has a double bed AND a twin!  AND a private bath!  Woohoo!  We are in the isolation part of the house though, so if they get a transplant patient, we will get kicked out.

Well, that's all I have the energy for tonight.  I'm sure tomorrow night's post will be full of information.  And if you have any questions you want me to answer, just post it in a comment and I'll make sure I answer it tomorrow.

Goodnight and thank you for all your thoughts and prayers!  We are very appreciative!

Friday, July 9, 2010

A boy and his marker.

It's been a weird day.  I feel like my mind is not 100% present all the time.  And I feel like I'm awkward.  And that everything's awkward.  It's hard to explain.

We had feeding and speech therapies today.  As we were walking out the door I just happened to remember to grab the food.  Kind of important for feeding therapy, you know?  And when I prepared her food ahead of time, I was feeling very on my game.

Feeding therapy went well.  She was very cooperative.  And even though she did vomit during it, she still managed to eat over five ounces.  Not bad.  We said our good-byes (since we won't be seeing Allison for a while) and headed on over to speech therapy.

And that's when I realized that we forgot Harlie's speaking device.  Ugh!  And then, once we got into the room, I realized that we forgot her speaking valve.  Ugh!  I hate the way I feel during moments like that.  It's like all the good things and good thinking I've ever done evaporate into thin air.  Grrr!

So, I try hard to tell myself that it's okay.  My mind is elsewhere right now.  It's understandable, right?  Please remember that you thought it was understandable as you continue to read this post.

Luckily, her therapist was okay with it and she proceeded on - and got Harlie to verbalize "yellow duck" and "brown."  I couldn't believe it!  It was wonderful.  Of course, she won't say them again.  Well, maybe she will in time.  But, certainly not on command!  Which is typical, I know.

Then I dropped them off at the house and went on to my hair appointment.  A while ago I got a chunk of my hair dyed pink.  While it was fun, it was not really noticeable.  So, I went back to get more pink.  And more pink I got!  I know, it's weird.  I'm 38 for crying out loud, and I have hot pink highlights.  What gives?  Well, I'm not really sure to tell you the truth.  I guess my thinking is that it's fun and harmless, not permanent, and why not?

But as I was leaving the salon, I couldn't help but feel this awkwardness with the people who work there.  Almost like I walked up in the middle of a secretive conversation, that they were dying to get back to the second I walked away.  I, of course, could do nothing but interpret that awkwardness as them thinking I was completely off my rocker.

Come to think of it - it was right before her last heart surgery that I went and got a perm.  Yes, a perm!  Maybe I don't make the best fashion decisions under stress.

Luckily, Tom said he likes it and that he doesn't think it's too much pink.

But I'm still feeling awkward for some reason.

So, when Tom got home, he started making dinner.  I am SO not your typical stay-at-home mom.  I can't cook worth a darn.  And have NO interest in learning.  But, I did manage to make a pretty flavorless guacamole for our fish tacos.  And prepared it in advance.  Pretty good, huh?

Well, during my clean up process (oh, and I make one helluva mess when I do attempt to make anything edible) Cooper came into the kitchen wielding a red dry-erase marker and proceeded to draw on the cabinet that I was (luckily) standing next to.  I, of course, scolded him as any good mother would, stood up and looked around.

It was as if I was never in the same room with this kid!  He had drawn all over the white kitchen table (which is located right NEXT to where I was standing making my delicious barely edible guacamole), and the end of the sofa, and some of the walls and all over the ottoman.

I mean, I was right THERE!  The kids were watching Toy Story 2, all being good and quiet.  Well, okay, ALL were not being good.  Quiet, yes.  Good, no.

So, Tom gets home, makes the rest of the dinner (thankfully) and goes upstairs to change clothes.  He gets halfway up the stairs and yells out, "Christy, I take it you haven't been upstairs lately?"


No. Please tell me it's just dirt. Or toys? Lots of toys all scattered about.  All dangerously placed on the stairs.  Clean and folded clothes dumped from the hamper?  Poo?  Anything but red, dry-erase marker!  Which, in case you're wondering, only wipes off easily from a dry-erase board.  Walls, furniture, not-so-much.  And yes, I know this from recent (meaning Cooper) experience.

So, I reluctantly go to the scene of the crime.  And, yes.  There is red, dry-erase marker everywhere.  And I mean, he left no room untouched.  Luckily, our, Harlie's and the kid's bathroom doors were shut.  As we walked around we could see where he found the marker (despite all attempts at keeping markers in a case on a high shelf).  In Murphy's top desk drawer.  Cooper clearly found the marker, and then proceeded to decorate everything from his wooden chair to his quilt, sheets, and bed frame, walls and closet doors.  Then he left Murphy's room and hit the hallway, doors and baby gate.  Then he went into his own room and walked around the perimeter marking on anything that had a flat surface - and even a stuffed animal(?).  Yeah, I don't get it either.

Then he left his room and headed to the third floor stairs (marking on the halls as he went).  He marked on the carpet of most of the stairs, the threshold at the top of the stairs, the walls, trunk and lamp shade.  Yes, the lamp shade!  What is up with this kid????

It was at the sight of the stairs that I completely lost it and could not stop laughing.  I mean, what else can you do?  It was so overwhelming that laughter seemed to be the only solution.  And I can't help but picture him strutting around with his shoulders back and belly sticking out, just marking away.

We are speculating that after he hit the third floor, he headed all the way down to the first floor where I heroically noticed that he had a red, dry-erase marker and scolded him like the good, watchful mother that I am.

After that, we all sat down to eat dinner.  Yummy fish tacos with lime sour cream and flavorless guacamole.

And that awkwardness seemed to sit right down with us at the table.  I could totally tell that Tom had a lot on his mind.  I, clearly, have a lot on my mind.  Harlie was VERY uncooperative eating.  Cooper didn't like the fish and I can't help but worry about Murphy.

I think there's trouble in paradise between him and C.  Okay, he told me Tuesday that he got in trouble with Ms. Frances and that she told him to just leave C alone for the day.  After me asking a bazillion questions, I finally surmised that he was following C around and it got on her nerves.  She told Murphy to stop.  He didn't listen.  So she told Ms. Frances, who then told Murphy to just leave her alone.  Ugh.  How will my heart take it???  He has not mentioned her name since.

I hope he's having fun at Summer Blast and getting along okay with the other kids.  But, I have a sneaking suspicion that he's not feeling all that great about it.  Tom says I am totally reading too much into it.  I hope he's right.  But Murphy doesn't have Summer Blast on Fridays and I won't be there on Monday to talk to them to find out more information!

And this damn awkwardness!  I had to just say it (once Murphy was excused after he barely spoke at dinner).  And Tom agreed.  It's just this weird feeling.  We know each day we are closer and closer to some sort of living hell for parents.  And, for Harlie.  It just makes for weirdness.  So many feelings we're trying to control, ignore, displace and accept.

Somehow we'll get through it.  I know.  Maybe I should focus on finding a paint color for the upstairs hallway.  That's been on our list since we moved in, anyway.  But not until I find and hide (perhaps we should get a gun safe?) every stinking marker in this house!


Wednesday, July 7, 2010

River Pics

Is this a picture of a happy little girl, or what?

I know there are some people who would freak out if they saw a trached child anywhere near water.  But, how in the world could I deny her this happiness and experience???  Especially before a major heart surgery.  Sometimes, you just gotta live life to the fullest!

Murphy went tubing for the first time ever.  He loved it.  Which was kinda surprising considering he's not much of a risk taker!

It is hard to have a child that you can't let in the water.  She would love it so much!

So, we let her drive.  Okay, not really.  But she was happy anyway.

Cooper was having fun, too.  You just can't tell in this particular photo.  He wanted to be in the water the whole time.  He is such a fish!  That's Tom in the background.

Is this a picture of a happy guy, or what?

He's happy because he's married to me.  It has nothing to do with him getting to drive a boat.

Thank you to Brandy and Joe for taking us out for a great day!