Today is Puppy Day!!!

We are on our way to get our Pug puppy!!! It is about a two hour drive. I am so excited I can hardly stand it! Now I'm going to be even more backed up with blog posts because I have so much to tell you about!

Anyway just a quick update for now. Lots of photos to come soon!

Thanks!
-Christy

Quick Update

On Tuesday, the 20th, I took Harlie back to DC so they could take a look at her incision, which was still bleeding a little.  They also made more adjustments to her pacemaker settings.  They are going to let her heart rate get as low as 50 at night.  So, they set different settings for the night from 8pm to 6am.  Pretty cool how they can do that, huh?

Anyway, the whole appointment was a little traumatic for Harlie.  When it came to looking at her incision, it took five people (two of which were men).

They removed the steri-strips and cleaned it all up and then put new steri-strips in place.  Then they put a dressing over it.  It's a good thing, too, because there was a place at the top of her incision that wasn't closing up.  And it started bleeding when they started messing with it.  Katie told me that in the past five years she has never had a patient come back seven days post-op with bleeding.  Harlie just has to be different all the time.  It's kind of annoying.

And for a girl with low tone, she sure can be strong when she wants to be!!!

Harlie and Katie

The pacemaker team wanted to see what her heart was doing for a longer period of time, so they put another Holter monitor on her for 24 hours.  And Katie said she should stay home from school one more day.  She is still sensitive in her chest, so I thought it was better to let her take it easy.  

Wednesday was crazy.  Because I had to get everything ready and pack for our first mini-vacation in four years!!!!  Woohoo!!!!

We went to Charleston, SC to stay with some friends and it was FABULOUS!!!!  And I can't wait to tell you all about it!  And show you pictures!!!  

But, I have tons to do - unpack and stuff.  Then I have to pick Harlie up early for speech therapy.  She hasn't had any of her private therapies in three weeks!  I'm glad to be getting back to our normal since before the surgery.  I had no idea this pacemaker surgery would be so time consuming.  I'm so excited to see how Harlie does in school today.  I really wish I had walked with her and Terri into school so I could see her classmates greet her.  It's been three weeks since she was in school!  I really hope she knows how much she's loved!  

Okay, more fun stuff to come soon!  

~Christy

More Updates

All is well with Harlie's belly!  Woohoo!

Saturday afternoon, we took Harlie and Cooper for a walk to a playground nearby.  Murphy was playing with our neighbor so they didn't want to come.  That was a little weird.  Since when does he not want to go with us to the playground????

Anyway, that got Harlie up and walking a bit.  I think that really helped her belly get moving.

It's so nice when they play nice together.  You know, those rare moments!

Walking like a little old lady, but walking!

Good, quality time with the kids...

I forgot to mention in my last post that on Friday Harlie woke up with a very bloody mouth.  I have no idea what that was about.  At first I thought she lost a tooth.  But after I got her all cleaned up, I realized that wasn't it - there were no missing teeth.  Who knows?  Even though she's making so much progress in communication, it still kills me when I don't know what happened to her or if something hurts her.  I don't know why communicating her pain is still so difficult.

On Saturday night Tom and I went out on a date night.  I made him take me to Petsmart so I could start thinking about all the stuff I want to buy for our little guy that we get in TWO WEEKS!  I just can't wait!  More about that later.  And I mean my excitement about his arrival!  I know you can't wait for all the puppy photos!

Anyway, on Sunday, Harlie woke up and her belly was almost back to normal.  What a relief it is to not have to worry about that anymore.  I know it's crazy, but I'm always afraid that it's going to be something seemingly "little" in comparison to some of the bigger hurdles she's overcome, that will have a devastating impact.  As much as I tell myself to not think like that - fears aren't exactly rational.

Later that day the kids went outside.  Tom worked in the yard and made them a little fort with some clippings from a tree.  They loved it.

Finally - a smile!

She is definitely feeling better.  Still walking carefully and guarding her incision.  Unfortunately, her incision was bleeding, which I found odd.  We were five days post-op on Sunday.  I took a picture of it and sent it to Katie at the hospital.  She called me this morning to tell me that they need to see her and before our scheduled appointment on Friday.  So, we go back in the morning (Tuesday).  They are going to have to take off the steri-strips and clean it to see what's going on.  I really hope it's not infected.  And I totally dread the process of cleaning that incision!!!  I debated on whether I should post the photo, but I figured if I have to see it, so should you.  Hey, I said I was going to be more honest!

On Sunday night (going back and forth a little here, sorry) two things happened that I consider amazing forward progress with Harlie's oral feeding.  I think it's pretty crazy how she seems to do this (make jumps forward) after a hospitalization and/or surgery.  She's such a crazy kid!

Anyway, she asked to eat dinner with us.  I mean that she wanted to sit with us at the table AND eat with us.  This is something we've wanted for years, but just haven't been able to make it happen.  I've tried to feed her at the table with us, but it never goes well.  She always has a better feeding when I can focus on her.  By the time I got her food all ready, everyone was gone from the table and she no longer wanted to eat.  Next time I'll be ready.  We don't always get to sit down at the table, so we'll just have to see how things go over time.

The other thing she did was ask for ice cream!!!  On Sunday night, we took the kids across the street to Brusters for ice cream.  We all just got the baby cones.  Well, except for Harlie of course.  After a few minutes, Harlie signed ice cream.  I asked her if she wanted some and she nodded yes.  So I made her say, "I want ice cream" on the communication device and Tom got her a cone.  And for the first time EVER, she willingly licked ice cream.

We were so excited!  We were all, "Good job Harlie!" and "Tom, take her picture eating ice cream!" and I couldn't help but wonder what all the people around us were thinking.  They were probably thinking we were a bunch of freaks.  Oh well.  We were happy, so who cares.

Today (Monday) she did well, I think.  She had a good morning, but then seemed to feel bad in the afternoon.   I gave her some Tylenol.  I tried to get her to tell me that she hurt - but she would not confirm or deny.  But, she was holding her incision (which I covered with gauze and tape, by the way) and she just looked like she didn't feel good.  So, I figured she probably was hurting.

Tonight was a Daisy meeting.  I hate that she had to miss it, but I just didn't think she was up for it.  And I was afraid that she would hurt herself by being more active than she was ready for.

Well, I need to get to bed.  We have to leave the house before 6am to make it to the hospital on time.  Hopefully it will be a quick trip.  I'll let you know how it goes!

Thank you!
~Christy

We are home

Sorry it's been so long since my last update.  Things have been crazy busy.  Here's the rundown:

Thursday
So, we had a priority discharge for Thursday morning.  The last time we had that was May 11, 2011.  It was Murphy's birthday and I wanted to be home before he got home from school.  They were awesome and I was gone by noon, if I remember correctly.

However, this priority discharge didn't happen.  The process was painfully slow.  To give you the full picture, I need to give you some background info.  So, whenever you have anesthesia, your bowels go to sleep, and it takes time for them to wake up and start working.  But, in the meantime, it leads to painful gas pains and constipation.  This process has gotten progressively worse for Harlie with each surgery.  I try to learn something from each experience to try and make the next time better for her.  I believe she has low tone in the GI department anyway, and having anesthesia on top of it, makes for a painful recovery - for both of us.

Despite all my experience and efforts to make things better, this one has been the worst yet.  We never stopped her normal daily regimen of Miralax.  But, her belly is so distended and hard and she is clearly in a lot of pain.  And it doesn't help that she can't (or doesn't?) communicate where her pain is - her belly or her chest - so we can concentrate on one area.  To give her pain meds for her chest (something stronger than Tylenol) means more suffering in her belly since narcotics slow the bowels down even more.

We tried several things in the hospital, but hospitals move too slow for my liking.  On Thursday morning I asked for more ammunition, but was told anything else would be too extreme at this point.  Fine, whatever, I'll have her home in a few hours and I can do what I want, was my thought process.  Waiting for them to agree, suggest, order, deliver, administer, etc. seemed way too much to me at the time.  Plus, to be completely honest, I did not like our nurse practitioner who was in charge of us and our discharge.  I find her to be rather "know-it-all" which I think is dangerous in the medical field.  Especially when dealing with someone like Harlie, who bucks the system at every opportunity.

It also didn't help that I have dealt with this person before - when she was in the wound care/trach department.  Trust me when I say that she was not helpful when it comes to Harlie's trach.  And unless you've been a trach specialist (is there even such a thing?) for years and years and years, I'd like to see someone who can "help" me when it comes to Harlie's trach.  I have taken care of her trach 24/7 for almost 5 and a half years, whereas any hospital employee works about 32-40 hours per week and probably does very minimal hands-on stuff when it comes to trach care.

For example, last year when Harlie was in after her spinal fusion, this person brought some new nurses that had never seen a trach changed before.  She started to "teach" them by changing Harlie's trach, which I was going to let her do.  Until she got out a table full of supplies - gauze, sterile water, saline, etc.  None of which is used when I change Harlie's trach.  Then she put the trach ties on backwards (upside down, maybe?) on the trach.  At that point, I couldn't take it any more and I took the trach from her, fixed the ties and changed her trach in about 1.2 seconds and was done.

Anyway, the whole thing just rubs me the wrong way.  I can see someone coming in and checking out her trach and stoma to make sure everything looks good (and looks like I take care of it) once.  But every day?!  That's a little ridiculous, especially when you can see that everything looks great.

Anyway, my whole point is that I didn't have a lot of trust in this person's abilities before this hospital stay.  She said they could give her some stuff that would probably help.  But, at that time, we were about to get in the car for several hours.  So, I told her that I would just do that stuff when I got home.  Had I realized that I wouldn't leave for another FIVE hours, my decision would have been different.  Five hours of a wait equaled seven to eight hours before we got home.  Ugh!!!

I don't believe she's ever been discharged home without having some degree of success in the hospital.  But, I didn't think we were in good hands!  I just wanted to get her out of there.  And, yes, I wanted to make it to Murphy's school musical.  However, had someone I trusted argued that she should stay, I certainly would have.

By 3:30ish I had lost my patience and I packed Harlie up and walked towards the nursing station.  Her nurse (who seemed to be trying her best) was printing out her discharge paperwork.  I signed it, but it didn't have her follow-up appointment on it.  And since we have to go back to DC for that, and be seen by a couple of different departments, I wanted that already coordinated.  The nurse said that she had been trying to get the NP to put it into the computer but she hadn't yet.  So, I walked to her office (the NP's).  I asked her when the appointment was - got it and said thanks.  Then she said, "I'm going to print it out in just a few minutes."  Yeah, right.  I think I've heard that before.  So, I politely said, "Okay!" and then promptly walked to the elevator and left.

I went over to the CICU to say good-bye to Kim and Adelynn.  While there we ran into Heather (our social worker) and Dr. Jonas (our heart surgeon).  So, we chatted and took some photos.

Adelynn, Dr. Jonas and Harlie

Heather, Me, Dr. Jonas and Kim.  And Adelynn and Harlie, of course.

While we were over there, I got a call on my cell from the nurse on the HKU.  Oops.  She said she needed to give me some papers (you don't say?) and that she would run it over to me in the CICU.  Okay, fine.  But, time passed, we were done with our pictures and had said our good-byes.  It was time to go.  But she wasn't there yet.  I waited another several minutes.  And then I left.  

I got to my car and put Harlie in her seat and started to get her movie ready when I heard, "Mrs. Holton!"  Oh geez.  That poor nurse has been running all over looking for me.  I did feel bad, but hey, I had to GO!  And here's the thing about that paperwork - I didn't need it.  It was stuff for her local cardiologist (I doubt he even needs it) and we won't be seeing him until after our follow-up appointment back there, which meant I could pick it up next week and all would be fine.  It wasn't worth missing Murphy's school performance for, that's certain.  

But, the nurse was obviously stressed and in trouble by that stupid NP and started to cry.  I gave her a hug, explained why I left without it and told her to relay that info to the NP.  Then I had to give her a little pep talk to try not to let the NP get to her.  If she takes good care of her patients, she'll do just great.  I think most parents are going to see through this NP, anyway.  

So, finally, at 4pm we got on the road.  Traffic was awful.  And despite my being a pretty good rule-follower (except when it comes to leaving a hospital without "proper" paperwork) I jumped on the HOV (it's 3+ riders from 4 to 6pm).  I figured if I were stopped I had a pretty good excuse.  

I pulled into the driveway at 6pm and was at Murphy's school for the show at 6:45ish.  Whew!  I hated getting home and leaving Harlie so fast.  That was not what I wanted.  But, Brandy came over and Maryann took Cooper to the playground so Tom and I could go watch Murphy.  

I've been meaning to talk about how difficult it is to transition from the intensity of Harlie's medical issues to the "normalcy" of an event.  And going to the spring musical was no different.  It's weird.  It feels awful.  I feel like I haven't even taken a deep breath and I'm somewhere TOTALLY different than where I was just 3 hours ago.  Just 3 short hours ago I was surrounded by sick, hurting, children, some of them chronically (regulars at the children's hospital) to being at this school where most of the kids there have never set foot in a children's hospital.  And most of those parents who have most likely never held their child down to get an IV (or many), change a dressing, or given them an enema.  They don't know what anesthesia or blood smells like.  It's just weird.  Two different worlds.

In moments like that I feel so different and alone.  And then while I'm trying to enjoy watching Murphy be totally typical, I find myself thinking about - and worrying about - Harlie.  How's she doing at home? What could I have done to make that hospital stay better?  Should I have taken her home?  And what is it going to be like when it's her class doing something like this?  Is she going to be able to participate?  Will she be able to sing?  How am I going to watch without crying my eyes out?  

Then I feel guilty that I'm thinking about all that other stuff and not concentrating on Murphy.  It's really awful.  

And then after the performance one of the moms from Murphy's class came up to me to ask me how Harlie and I were doing.  She was so nice and she recognized that pulling into the driveway at 6pm and standing there 45 minutes later was stressful - and weird.  I was so thankful.  She asked me if there was anything she could do for us.  I told her that her just saying something to me was enough for me.  So many people are so uncomfortable saying anything at all.  The fact that she got over her own uncomfortableness to offer me some kindness was all I needed to feel a little bit better.  

We went home, had some ice cream (I fixed a drink for me) and then we hung out for a bit.  Then we all went to bed.  Ahhh, my own bed!  I know Harlie missed her bed, too, because the second Tom put her in bed, she fell sound asleep.  

Here are some pictures of our week's accommodations:

My bed/couch.  Looks comfy, doesn't it?

Harlie's bed (this is in the HKU - not ICU).

Friday

So, Harlie's last meal was sometime Wednesday afternoon.  Her belly was so distended, the thought of feeding her seemed especially cruel.  I asked her if she was hungry and she shook her head no, every time.  By Friday morning, with no progress in her bowels, I was getting worried.  She was clearly in pain and I wanted to make her feel better.  

So, I called her pediatrician, told them all we had done (all the normal things - suppository, enema, colace, miralax, lots of water, etc.).  I wanted something like Go Lightly (the stuff you drink before a colonoscopy) through her g-tube to take the work out of it for Harlie.  He said that would be too hard on her intestines.  So, he suggested mixing 8 ounces of Miralax powder with 32 ounces of Gatorade and giving it to her over 4 hours for a one-day cleanse.  Okay, great!  Started the process at 9:45am.  Had little success with that.  Which was really disappointing!  I thought for sure that would make her all better!

Harlie's teacher sent her a video of her classmates saying hello, telling her they missed her and loved her and that they hope she gets better soon.  One of her friends spelled "I love you" in sign.  It was so cute!  And it made me cry.  Now all of her hospitalizations are affecting her friends, not just her family.  Wow.  She's really growing up!  Then she came by to bring a banner that they made and signed.  

I gave Harlie a bath that night.  Until the steri-strips come off the incision, you can't let it get wet with bath water.  You have to use clean water and drip it on the incision.  Then drip clean soapy water on it.  Then drip clean water on it to rinse it.  Then pat (very lightly because she's super sensitive) it dry.  So far it is still bleeding a little.  It has gotten blood on all her shirts/night gowns.  And when it got wet, it actively bled for a bit.  So, I need to e-mail my contact up there to make sure that's okay.  I've never taken her home so soon after this kind of surgery.  So, maybe she's moving too much (which is unlikely) or her coughing and distended belly are putting some pressure on it internally.  I don't know.  I'll just watch it for infection.  I DO know what that looks like!  

Then with her night meds, I gave her a flush of plum juice and Gatorade.

Saturday

When I went to give her morning meds, the purple color of last night's juice came up the tube.  Now that's strange.  I gave that to her last night - on an empty belly.  It should be long gone by morning!  Then I listened to her bowel sounds and I didn't hear anything.  When Brandy got here I had her listen, too.  She didn't hear anything, either.  

I seriously contemplated taking her to the ER here for abdominal x-rays.  But she told Brandy she was hungry, so Brandy fed her (orally) 4 ounces of formula and about 3 ounces of pureed plums.  That was her first meal since WEDNESDAY!  So our thought was that maybe her belly was empty (even though it looks FULL).  She probably has an ileus, which she's had before.  But, last time not feeding her was the answer.  This time, it looks like feeding her could be the answer.  It probably has something to do with timing of the feeding, discontinuing the narcotics, etc.  

Regardless, she's asked to eat three times so far already and it's 2pm.  So, I think that's a great sign.  She's also gotten up a few more times, asked to play the Wii and she's now sitting in the chair instead of on the couch.  She even got up to fix herself a cup of water and sat at the kitchen table to drink it!  While sitting there, Cooper came up behind her with the stethoscope and listened to her.  Then he said, "I'm going to fix Harlie."  Break my heart!  He is the sweetest, most affectionate child I've met.

Okay, this has been long enough and I need to feed her.  So, I have to go.  I have lots more to talk about (shocker, I know) so I'll try to post another one tomorrow.  

Thank you for all the love and support this past week (and the past 5+ years)!  We really couldn't survive this life without it!  

Much love!

~Christy

Post Op Day One

So, I know I was exhausted last night because of the title of my last post, "Post Op Day Two."  What the hell is that about?  None of that title is accurate!  Clearly, I'll have to go back and change it.  

Today has been okay, I think.  Nothing too major.  I'm feeling pretty guilty though.  I think she's been in more pain than I realized.  So, we weren't on top of it, and now we're trying to play catch up.  

Sometimes I think her medical history and my perspective is a danger to her.  I really thought of this as a very simple surgery (in comparison to her previous 20) and it never occurred to me that she could be in pain.  It doesn't help that she does not communicate pain at all.  And that the anesthesia combined with the narcotics that she did receive have now left her constipated.  So, she's got that discomfort along with the pain from the incision and probably pain from them placing the pacemaker generator behind muscle.  

We made her get up and walk around the unit some.  She was not very happy about that.

  

But everyone loved seeing her up and walking about.  This is also a first for her.  She's never been able to walk around during a hospital recovery.  So, that's another pretty cool milestone.  

We had an awesome nurse today.  Here's Tracy with Harlie when we got back from our walk.

And here's Harlie eyeing the bed wondering why the hell I'm not putting her in it!

It also occurred to me during this stay that I have never gotten a photo with Dr. Jonas, her heart surgeon.  In hindsight, I wish I had gotten photos of all her surgeons.  That would make for a good collection.  So, when Dr. Jonas stopped by to see her today, I got one.

The pacemaker team came back twice today to continue to try to adjust the pacemaker settings.  

One of the pacemaker people (Carol) said she was going to get me a book about pacemakers so I can learn all about it.  "Great", I said (very sarcastically).  Sometimes I seriously think my head's going to explode from all the medical information I have to learn and retain.  Blech!  The one saving grace is that I don’t have to clean it (the pacemaker, I mean).  So, there’s that.

They said that she is a complicated case to pace.  Her heart wants to initiate beats from different areas (sometimes from the atrium, sometimes from the ventricle, sometimes from in the middle?) and not in any kind of rhythm.  The electrophysiologist tried to explain it to me.  He lost me pretty early on in the lesson.  He said a bunch of things like, QRS, echo beats, sinus node and AV node dysfunction, etc.  I’m not even going to try to explain it until I know a smidge about what I’m talking about.  Most of the stuff I’ve been able to at least follow a little bit.  But this electrical heart stuff is way over my head. 

Basically he said that her heart and the pacemaker are competing.  But since her heart is all over the place, it’s really hard to set the pacemaker for her so the two live in harmony.  Too much pacing, and too little pacing are both detrimental to her heart.  So, no pressure there. 

And since Richmond doesn’t have a pediatric electrophysiologist, we will have to come up here for all of her follow-ups until they get everything set at something they are all comfortable with.  After that we can see her local cardiologist.

It is now after 10pm and Harlie is resting – although I can’t say “comfortably.”  I really should have noticed her pain earlier.  All the signs were there – shallow breathing, she doesn’t want to cough, higher heart rate than usual (although the pacemaker definitely made that one harder to read) and she’s been laying with her legs all bunched up close to her. 

We’ve given her lots of water, only two cans of her formula and some pain meds (with codeine, which doesn’t help the constipation issue).  We’re going to try a suppository tonight.  Hopefully that will help make her feel better. 

She’s not communicating at all, really - other than saying "no" to any and all questions.  She’s definitely mad at me.  But a lot of that could be explained by just being overly uncomfortable. 

Tonight we were moved from the CICU back to the HKU.  Which, surprisingly, I don’t mind.  It’s definitely quieter over here, so I think she’s better able to get some good rest.  And I can eat in the room, so I don’t have to be gone from her for so long. 

Right now the plan is to finish the 48 hours of IV antibiotics tomorrow, get us all scheduled for all the follow up appointments, talk to the pacemaker team again, and then hopefully be discharged early enough that I can make it to Murphy’s school musical by 7pm.  Luckily, Brandy made herself available to come over so I can go.  Obviously, taking Harlie to a school function would not be very smart. 

So, this week we were lucky enough to be in the hospital when a friend’s daughter (Adelynn) was in, too.  So, Kim and I have been able to eat lunch together and just get out and talk several times a day.  It’s been awesome!  Having her around has totally made this hospital stay so much better (for me, of course). 

And when Adelynn went for a wagon ride and a walk, they brought her over to Harlie’s room so they could see each other and say hi.  Then when we took Harlie for a walk, we took her over to her room.  It would have been awesome if there was a playroom for the two of them to play in together. 

Unfortunately, Adelynn had to celebrate her 4^th birthday (today) in the hospital.  I had to take a picture of her room because she has so many balloons!

We had to laugh because I thought I had a lot of stuff.  HA!  They definitely win that contest.  And that makes me feel so much better.  Now I know that accumulating stuff in the hospital is completely normal!

Here's Kim and I...

After we got moved to the HKU (in a different wing and on a different floor than the CICU) Kim called me.  She said that someone asked Adelynn what the best part of her stay was and she said, “Seeing Harlie.”  Isn’t that the sweetest thing ever?! 

When Adelynn is all better, we are going to meet and let the girls play together.  Adelynn is getting a g-tube in the near future, and I think it might be good if we could show her Harlie’s g-tube.  Maybe that would make her feel better about it.

Well, I need to sign off now.  We are about to torture Harlie with a suppository and potty break.  I really hope everything goes well so we can leave tomorrow.  I want her to like me again.  The nurse is here so I don't have time to proof my post.  Please forgive my typos!

Thank you all for all your thoughts and prayers! 

~Christy

Post-Op day two

Today went well, I think.  I'm still so freaking happy that they were able to use her leads and just install the pacemaker generator.  I was thrilled anyway, but after hearing the buzz all day, I'm even more thrilled.  Apparently they were expecting the leads not to work and were prepared to do a sternotomy.  So, they were even surprised.  Did we get lucky today, or what?  

Since the surgery was relatively quick (by Harlie standards) I was surprised at how sleepy she's been all day.  And puffy faced, too.  Here's what she looked like all day...

 But, during rounds a few minutes ago, they said they weren't surprised at all, because she got a big dose of Fentanyl during/after surgery.  Hopefully tomorrow she'll wake up and be more like herself.

They had some adjustments to make with her pacemaker settings.  There was some commotion in the room earlier today that made me a little nervous.  Her alarms were sounding (the fast alarm that says "don't ignore me") and they were brainstorming about what was going on.

Basically her heart rate reading from her arterial line was different than what the monitors were showing (which read her heart rate from monitors on her chest).  The arterial line is the more accurate reading.  The nurse had to get the charge nurse, who had to call cardiology, who had to call the pacer people.  I gave them some time before I asked if there was a possibility that a lead could be bad and she said it would be very unlikely.  Whew!  And she said that the settings they put into the pacemaker in the OR just need to be tweaked a bit.  Her heart wanted to beat at a different rate than what the pacemaker was set for (I think).

That's why they will want to see her once a month for the first three months, so they can get the settings in a good place for her.  They will come back tomorrow to do more checking.  And she said that they might want to do a Holter monitor again to see what's going on.

They also did an echocardiogram, just to make sure it really was the pacemaker settings and nothing else going on.  Since they need the reading from her arterial line, they couldn't take it out (which was the original plan for today).  So, maybe they will get that all straight tomorrow.  Regardless, I feel much better now and am no longer worrying about it.  Well, seriously worrying about it, anyway.

Pacer readings on the left and echo on the right.

A brief awake moment.

They took out her foley catheter around noon and by 7pm or so, she still had not peed.  Then it finally occurred to me that - HELLO! - she's potty trained.  Duh!  We asked her if she needed to go potty (of course she said "no" which is her favorite word to use in the hospital).  But, of course, I ignored her and we put her on the potty anyway and she peed.  When they came to do rounds around 9:30 tonight, she was still over 500ccs positive in fluids (which means she needs to pee).  They wanted to cath her again if she didn't pee soon.  So, we put her on the potty and she went again.  So, no cath necessary, which is good.

They FINALLY got the orders and formula to feed her and we gave her two ounces (via g-tube, of course) around 10pm.

Her incision for the pacemaker generator, which is behind muscle in her abdomen.

A sweet care package from Harlie's Daisy Troop!  

She's sleeping for the night now.  I put her bed in the flat position and turned her on her side and she seemed to be very comfortable.  She has IVs (well, one's an arterial line, I think) in both hands - so she's hiding them under the covers.  And she has an IV in her lower leg.  So, hopefully tomorrow she'll wake up feeling more like herself.  And if we can get rid of some of those lines, she'd be a lot more comfortable, too.

I don't know how much longer she needs to stay.  I'm hoping for a Thursday discharge.

Oh, and in other news... right as I was walking into the CICU to see Harlie after surgery, I read an e-mail from Boston Children's.  Her surgery date is August 24th.  It felt so weird to be finding about another surgery date when she just finished with this one.  That poor kid.

The date is definitely later than I wanted.  This means that she will most likely miss the first week of school.  I was thinking that if this happened, I would aim for surgery sometime between Thanksgiving and Christmas.  But, Tom and I talked about it and that just seems worse.  So, we decided to take it and just get it over with.  Hopefully, it will go smoothly and she won't miss that much school.

She's going to do summer school this summer, so I'll ask her teacher if they can focus on the first several weeks of school so she won't fall too far behind.

Well, all of a sudden I'm so sleepy I can't type anymore.  I'll update again tomorrow, of course.

Thank you so much for all your love and support!
~Christy

Surgery Update 2

Fabulous news!!! The leads worked great!! I am so relieved!! Dr. Jonas came out and said they were all pretty pessimistic that they would work. But they did! He said they got great numbers from them so all is well! They put the generator in her abdomen behind some muscle.

They are taking her to the CICU and I should be able to see her around 11:30 or so.

Thank you!
~Christy

Surgery Update 1

They took her back at about 7:45 this morning. I just got the first update that the procedure started at 9:06. That's a long time to get her under and IVs and central lines started! Her access is getting so difficult.

Anyway, I heard the results from her CT scan. And its a good thing they did it. Her heart is right up against her sternum. So if they have to replace her leads they would have to put her on heart bypass before opening her chest. They would decompress her heart to pull it away from the sternum and then do the sternotomy. Crazy stuff. It would also be her 5th sternotomy in five years. I'm SO hoping that her leads work just fine.

My mom came up for the day. So we are just hanging out - waiting. I now have access to my blog - obviously - so will update you again when I know more.

Thank you all so much for thinking of us! Its so comforting to know you all care about us!

Much love,
~Christy

Pre-Op Day

Today was busy, as expected.  Harlie’s CT scan was in the morning and she did fabulous!  It was with contrast, so they had to plug it into her IV.  Well, Harlie is very protective of her IV hand, and fought them pretty hard.  The lady asked me if she was going to hold still for the CT scan. 

Do I look like I can predict the future? 

How the hell am I supposed to know?  That’s totally what I wanted to say to her, too.  But, I didn’t.  I guess Cooper gets his politeness from me.  I just told her that I didn’t know.  Duh. 

Then she went on to explain that if they give her the contrast, and she won’t hold still, we will miss our window of opportunity and we’ll have to wait another 24 hours to try again. 

So, in other words, no pressure. 

Geez, lady.  Have some compassion!  She’s five and she’s not doing it on purpose!  So, I did my best to explain to Harlie that it won’t hurt and to just hold still and it will all be over quickly.  It’s the same spiel I give her for most things hospital-related and it rarely makes a difference.

But, she actually held perfectly still and they were over in way less than the estimated 10 minutes.  That’s my girl! 

Unfortunately, I was unable to coordinate the information to include the jaw CT scan for the team in Boston.  Which means that she'll have to have another CT scan with contrast in the next several months.  Bummer.  

Then later she had x-rays and an EKG (which she HATES because of all the stickers, of course).

Does she break your heart, or what???

After that, they did labs.  Luckily, they were able to get the blood they needed from her IV.  But then while fooling with it, it blew.  So, we are trying to get them to wait on an IV until after she’s had versed and something via her trach to put her to sleep.  So, we’ll see.  It’s now after 10pm and I think it’s just cruel (not to mention that it most likely causes post traumatic stress disorder) when you wake up a sleeping child to start an IV.  And if it doesn’t cause it in her, it causes it in me.  I don’t want to have to wake up to that crap, either. 

I also asked them to not do vitals every four hours as ordered.  I just think it is unnecessary to wake her up when she’s perfectly fine and healthy.  So, they are going to skip the one in the middle of the night. 

At 6am they are going to do another chest wash (she just did one at 10pm).  They wash her chest with something that makes it super clean and reduces the risk of infection should they have to do a sternotomy (open her chest). 

Which, reminds me… Spoke to Dr. Jonas today and gave consent for the surgery.  He said it is a 50/50 chance that the leads will work and they won’t have to open her chest to replace them.   Clearly, I am hoping and praying that they won’t have to open her chest to replace them.  That definitely changes her recovery drastically.  But, for now, I have hope everything will go great and that won’t be necessary.  He said that it could take one hour or it could take four hours.

Anesthesia time is 7:30am. 

She is now showered, and in bed.  Earlier tonight I took her off the monitors and we went to the playroom.   She played for a little bit and then signed “car” which means she wants to leave. 

While in the playroom the pacemaker nurse practitioner came in to talk to me about the device.  Did you know that she has to be seen by a pacemaker doctor (?) once a month for three months???  Geez!  Then, after that, she has to be seen every six months – forever!  They have to monitor the power and usage of the device so they know when the battery needs to be replaced (depends on how much the pacemaker is used, but it could last anywhere from 4 to 8 years, I think). 

Okay, fine.  More doctors, more appointments.  Sure, whatever.  But, did you know that she cannot be around magnets?  SHE CAN’T PLAY WITH MAGNETS.  Not even the ones on your refrigerator.  And not the ones that her class just did a whole little study on, either.  Grrrrr! 

And that just pisses me off.  Someone please tell me how the hell I’m going to explain that to her?  Especially when they are learning about them at school?!?!?!  Where does that leave her?

And that just goes to prove it is the little things that mean a lot in life.  Like the ability to play with magnets.   Ugh. 

Okay, it is late.  It was a long day and I need to get to sleep.  I don’t know what time they will come and get her (probably before 7am) but I need to get up and showered and ready before that. 

Oh, real quick, we had another hospital milestone today.  Harlie ate lunch by mouth – pureed spaghetti and peaches with very minimal resistance.  That was pretty awesome. 

Thank you for all your thoughts and prayers.  They are so comforting and I really appreciate it! 

Love,

~Christy

Night One

I have to try to be very quick with this update because:

1.     I have no power cord to my laptop (left it at home dammit!)

2.     It is now after 2am and I must try to get some sleep.  It’s been a busy night.

First things first…

We put a deposit down on a Pug puppy today!  Well, at least I think we did.  That was Tom’s job after I left last night to come to DC.  Either way, we found a puppy and he will soon be mine! ours!  YAY!!!  We still have the name thing to conquer, but I’m going to put off any official naming until after we have him and he gets to run around a bit so we can see if his name just comes to me us. 

I can’t tell you how excited I am about going to Petsmart to buy all of his much needed supplies!  This is exactly how I felt when I was pregnant with Murphy!  But even though I am so super excited, I am also super scared.  I know this little guy is going to take a lot of my time and energy and that’s a little daunting to think about considering my current amount of free time and extra energy.  I hope that I made the right decision in the breed and pushing this addition at this time in our lives.  

Anyway, pictures to come.

Okay, on to more serious news…

Harlie and I left for DC last night.  I had a hard time getting out of there.  I kept leaving stuff behind and I felt pretty disorganized, even though I had all our stuff pretty organized.  I know, it’s weird.  And I so hate saying good-bye to the boys.  When we told Murphy what was happening, he said he was scared.  Ugh.

Anyway, traffic was surprisingly heavy for the trip up (we didn’t get on the road until after 7pm).  But we finally arrived at 9:30pm or so.  I bought Harlie her own rolling luggage today at Target and she LOVES it!  It made her so excited to take a trip.  The first thing she did was sign “airplane.”  I meant to take a picture of her rolling her own suitcase, but my hands were full with my suitcase and the packed cart.  I’m glad we came so late so that not that many people saw us actually moving in.  One ER employee came over to help me and rolled the cart for me all the way to our room (on another floor).  She was very nice. 

This trip marks the first time that Harlie walked from the car to her room – and did not use the stroller.  Wow!  She IS getting big!  When we got to the HKU and passed the nurses station they all got such a kick out of her strutting down the hallway.  One of the nurses we’ve known for years.  In fact, we first met her before Harlie turned one.  It is so nice to see the nurses get a kick out of her and all of her progress. 

Harlie was fine about the whole thing until the nurse had to put the monitor leads on her chest.  Have I mentioned that she hates stickers?  Soon after that, they came to start an IV.  That was a nightmare, as usual.  He had to go get reinforcements.  And so it took four of us to get that done.  After that, she wanted to go to sleep.  She fell asleep quickly, but then was woken up again for vitals. 

My heart aches for her. 

There’s a mom I met through here who has a child with heart issues and her daughter is here now.  Her mom came up to see us and we got to chat for a while, which was really nice.

Well, that’s about it for now.  I have no idea what our schedule will be like tomorrow.   I can’t actually access my blog from here.  So, I’m e-mailing my post to Tom to post for me.   Hopefully I can get the access thing cleared up tomorrow.

That’s it.  Thank you for all your thoughts and prayers! 

~Christy

Another Change

So, Harlie seems to be feeling better.

On Wednesday right before 5pm she asked to go to bed.  Well, she signed "night-night".  So, I put her in bed and she slept until about 8pm.  Then she got up to for about an hour or so and then went back to bed.  She had a fever.  But she didn't seem too miserable, so I didn't give her anything for it.  I wanted the fever to do it's job and kill whatever was brewing.  I checked on her several times throughout the night to make sure she wasn't too hot.  And by morning, the fever was gone and she was way happier.

Even so, I took her to see her pediatrician.  He thought that she would most likely be fine by Tuesday.  It's probably just a cold.  But he put her on a 3-day course of antibiotics, just in case.

She seemed to be much better today.  She still has some thick secretions, but we suctioned way less today than yesterday, so that's good.  And no more runny nose, so that's good.  And tonight when I was putting her to bed I asked her how she felt (not expecting an answer) and she signed "happy."  So, I grabbed her communication device and asked her again.  And she said "I feel happy."  I told her that I was happy knowing that she was happy.  And I can't tell you how true that is!!!

That is the first time that I've ever asked her that question and got a very clear and purposeful answer.   So, so awesome!!!

I spoke to Katie again today about how Harlie was doing.  I told her about the fever the other night and gave her a full update.  She said as long as she continues to improve, we're good.  But if she gets another fever, I have to call her.  My fingers are crossed!

She also said that they are making another change in our itinerary.  Because she has to have a CT scan with contrast on Monday and might need anesthesia to do it, they need to do the CT scan when the cardiac anesthesia folks are available.  They are only available in the morning.  If we arrive at 8am, there just isn't enough time to get her admitted, get a bed, get to CT, get an IV (for contrast) and attempt to do the CT without anesthesia (because she can't move while images are taken and we don't know if she'll be able to do that for the length of time required).  By the time they do all that, and then decide she needs to be sedated, the cardiac anesthesia team will no longer be available.

So, we need to go up Sunday so she can get admitted, get a bed, and all that good stuff, ahead of time.  I told Katie she must really miss us or something.

A few weeks ago we had to sign up for booth sales with Harlie's Daisy troop.  You know, when you go to a store and you see the girls selling Girl Scout cookies?  Anyway, I signed Harlie and I up for one tomorrow.  But, of course, I did that way before I knew she would be having surgery this coming week. So, I've kept her out of school, she's on antibiotics and I am NOT exposing her to anyone sick.  It's going to be about 40 degrees, give or take from 9:30-11:30.  I'm thinking I don't want her out there.

And this would be why I try not to commit to anything.  I'm not reliable.  Period.  So, I'm just going to go and not take her.  It kinda sucks.  No, wait.  Not kinda.  It does suck.  But, it's just the way it has to be.

Then, to prove that I'm completely insane, we're going to look at a some Pug puppies!  I'm not as excited as I was yesterday because two of the three puppies are now sold.  Well, they are four weeks old and not ready to come home yet, but someone's already claimed them.  And we can't get there until 4pm Saturday, so that last one could be gone before then.  So, I'm trying not to get my hopes up.  We'll just learn from this and use it for the next opportunity.  I say that so calmly, when really I'm crying on the inside!  I don't know why I want this puppy so bad.  But I do.  I just think this house could use a little more joy.  We've been down in the dumps lately.  Too much stress.  And studies have shown that having a dog can greatly reduce stress.

How can you be sad while playing with this little guy?

Well, it is very late and I need to get to bed.  As tired as I feel, sleep isn't coming so easily.  The second I lay down, I think of 10 things I need to do that I'm afraid I'm going to forget if I don't write them down.  Then last night, after I finally fell asleep, Cooper woke me up with, "Mommy, I need to go potty."  WOW!  Well, okay!  So, it looks like we're making some good progress there!

Speaking of Cooper, he is so freaking polite it kills me!  The other day his teacher told me that every time they have Creative Movement class (which is once a week, I think) when they are leaving the class he turns around, waves to the teacher and says, "Thank you, Ms. Julie!"  And then Ms. Julie told me that sometimes he's more specific about what he's thanking her for and says, "Thank you for the hoops (or whatever), Ms. Julie!"  They said he is the only kid that does that and they love it!

Then yesterday, my Mom came over and brought small gifts for the kids.  After a while, she said to me, "Well, I have to go home now."  And then Cooper came running through the room (not stopping) and said, "Thank you for my present, Nana!" and kept on running into the other room.

So, he overheard her telling me she had to go and - completely on his own - came to tell her thank you.  That's just crazy.  And completely adorable!

If I tell him, "good job, Cooper!" he says, "thank you, Mommy."  And if he asks me to fix something and I do, he says, "Oh!  Good job, Mommy!"  And he always says "bless you" if you sneeze and if you say it to him after he sneezes, he says, "Oh, thank you, Mommy!"

The best part is the way he says, "Oh" like he's both surprised and impressed.  He's turning out to be a very funny kid.

I should really go now.  Thanks!
~Christy