Post-Op Days 10, 11 AND 12

Post-Op Day 10 (Saturday):

Weekends in the hospital are always way more depressing than a weekday.  There are way less people walking around.  The cafeteria is bare bones - only offering a small portion of what is normally offered.  It really has a deserted kind of feel.  

And I didn't pack any pants.  I packed light and really wished I had my exercise pants to lounge around in while hanging at the hospital.  Plus, I needed to get out of here for a bit.  So, I walked to Marshall's by Fenway (which is less than a mile walk) and did some shopping.  I got some pants, a new running skirt (yes, I still have dreams of running again one day) and a couple little toys for Harlie.  I walked back and as I got off the elevator on our floor I heard someone yell, "Mommy!"  And when I turned around I saw Tom, Murphy and Cooper standing there wearing their We Heart Harlie shirts!!!  HOLY COW!!!  It was totally awesome and definitely one of the BEST moments EVER.  Tom got it on video and I've watched it so many times.  I can't figure out how to post it on my blog.  So, when we get home, I'll get Tom to work on it so I can show you.

It was more wonderful than I could ever say to be able to see them and have us all together again!  And you can see how healing it was for Harlie, too!  Just look at her face in this picture!

Happiest Harlie face EVER.

You'd think that by now the boys would cooperate when getting a photo - but nope.  Oh well, we're focusing on Harlie here anyway!  

When we all walked in her room Harlie showed no reaction to seeing Tom and the boys.  But, just a few seconds later she picked up one of her new toys and started calling Cooper and Murphy over so she could show them everything.  And then the nurse was awesome and let her get unhooked so she could hang out in the back of the room with us.  We had to leave to go eat and I thought she would be upset.  She was really mad about having to get back in bed.  And who could blame her?  She's been in that bed for ten days straight!  But she seemed fine with us leaving.  After dinner, we came back and hung out until it was bedtime.  Then me, Tom, Murphy and Cooper walked back to the hotel.  I can't even begin to tell you how many times Cooper has told me that he loves me.  He is so funny.  And affectionate.

The boys had never flown before, so when they landed in Boston, Cooper opened the window shade on the plane, looked out and said in a very disappointing tone, "What?!  We're back at the airport?"  

Anyway, I promise you, since their arrival - she's been a different girl.  No more breathing support, her spirits are lifted and she is more than ready to go home.  The ICU wanted to put her back on CPAP for the night.  But, I asked them to wait until she showed signs of needing it.  When I called in the morning, she was fine all night, and never needed it!  Woohoo!  I was hopeful that after going all night without it that they would move us to the floor and then discharge us home Monday.  

Post-Op Day 11 - Sunday

Saturday night went well.  When the team rounded, I asked them if there was any way to be able to get her discharged on Monday so we could all go home as a family.  They were agreeable.  They could see that she was so much better.  But, they said that she was being sent to the cardiac floor and it would be up to them.  In hindsight, I should have asked begged them to let her stay in the ICU and discharge her from there.  That way, we wouldn't have had to get a new team on board.  But, I guess I was thinking that the team that knew her better would have more pull.  Especially an ICU team.

So, she went back to the cardiac floor.  And they wanted some good x-rays of her chest.  So, we went to x-ray (the portable x-ray machine doesn't produce as good images I'm told).  We went down with no monitor, no oxygen and in a wheelchair.  This girl is ready.

The x-rays are still looking bad.  At this point they are saying it's atelectasis (collapsed lung) versus pneumonia.  But they also said that clinically, she's great.  Which she totally is!

Up and playing OUT of bed.

Hanging with Daddy, enjoying the view.

I think she reminds me of Tori Spelling.  Which, isn't a good thing
if you ask me.  I'm hoping she starts to look more like herself soon.  

As much as I wanted us all to fly home together (wouldn't that have been so much fun?!) it was not in the cards.  The 4pm flight today was booked.  And that really was our only obstacle.  Total bummer.

Post-Op Day 12 - Monday

After MUCH thought (oh, how I hate logistics!) we decided that it was best to try for discharge today, I will take her back to the hotel to spend the night, and then we take a cab to the airport first thing in the morning to catch the 11am flight HOME!!

They rounded this morning, and there is NO way they could guarantee they could discharge her in time to get us to the airport.  And I really don't need that stress.  Plus, she will be thrilled to be at the hotel.  I asked them to get respiratory in here to see if they can rig up some way for me to give her humidified air with the oxygen.  I will have a portable concentrator with us to take home and then we will ship it back here.

Of course we had to say good-bye to the boys...

She's not so sure about this brotherly love stuff.

Oh how I miss these crazy boys!

So, it's now 11am, and I have to run a few errands so I don't have to take Harlie anywhere but straight to the hotel.  One of our obstacles (which I totally wish I had thought of sooner) is the crazy amount of drool.  She is unable to manage them on her own (by swallowing) so she is drooling a ton.  And she hates it.  So, I need to go find some bibs or she will go nuts.  She hates for her clothes to be wet.

Going home alone with her was definitely not in the plan.  But, there's really no way around it.  And I really think I'll be fine.  It gets us home the soonest.  And that's worth it to me.  So, this morning, Tom and I went through all our stuff and he took home everything I didn't need.  So, I will have one small suitcase, the rolling oxygen concentrator, Harlie's backpack, my bag, the suction machine, and Harlie and the stroller.  I can do this!  I am SO excited about getting home I can't stand it!

One total bummer thing that happened today is her in-the-ear hearing aid stopped working.  I'm guessing there's some dried blood in there somewhere.  I tried cleaning it, but I still can't get it to work.  Luckily, we have her BAHA, which works great.  But, it's still very annoying that she doesn't have optimum hearing.  We are going to be very busy with a lot of follow-up appointments when we get home.  ugh.

Back to the boys coming for their surprise visit... Tom told me that so many of our friends back home contributed towards their plane tickets to get them here.  Thank you, thank you, thank you!  Not only was it GREAT for us to be able to see each other again, I firmly believe that changed the course of Harlie's recovery.  Seeing her family lifted her spirits and got her moving, laughing and playing again.  All things that caused a quicker progress in her recovery.  We would not be discussing discharge today, if it weren't for that wonderful visit.  What an incredible gift!!!  We are so, so grateful!

Well, I need to run and get some things straight before discharge.  Thank you for all your thoughts and prayers!  You all helped make a difference and we are so thankful!

Much Love,
Christy xo

ER visit

Thursday

Harlie seemed totally fine (well, except for that little pesky O2 requirement), so off to school she went.  Seriously, I was thinking any minute now, she's not going to need it.  

After everyone was where they were supposed to be, I went to my Adrenaline class.  It was great.  Then I came home and sent some e-mails.  I e-mailed Harlie's pulmonologist.  I just wanted to let him know what was going on and get his opinion.  I really couldn't quite understand his response, to be honest.  I really like her pulm, he's great and very personable.  And when we see him in the clinic, he always explains things in a way that I can understand.  However, this is just one sentence from his response...

There could also be more shunting going on with blood bypassing the lung across her cardiac defect from more resistance to blood flow through the lungs by the edema.  

Got it?  

However, this I understood easily...

Lastly, she has almost half the lung reserve that she needs and the illness (and healing) will create more oxygen demand particularly with any exercise.

Because he mentioned "shunting" and "heart defect", I went on ahead and sent an e-mail to her local cardiologist (just to be on the safe side).  He mentioned pleural effusions asked if she's had a chest x-ray.  Um, no.  We were really trying to avoid that.  But, maybe we should consider that.  Tomorrow, of course.  

At some point during the day Terri sent me a text to tell me that she was up to two liters on her tank, to keep her sats in the 80s.  That's kinda high.  For Harlie, at least.  Especially on day three of ABs (antibiotics).  Hmmm...

When they got home from school Terri told me that the tank at school was pretty much empty.  

It was after 2pm now.  Considering she will most likely need more tanks for school on Friday, I needed to get on that and fast.  So, I immediately called our supply company and asked about getting more tanks.  This was a nightmare, but let me try to make it more simple for you...

We had one "E" tank - which is a larger tank that goes in a rolling cart (which was empty and still at school).  

We also had two "D" tanks - which are smaller tanks that go in a shoulder strap bag thing (one was almost empty and one was full).  

The E tank was staying at school and Terri was using the D tank to get her to and from school.  That way she didn't have to carry the bigger tank on the bus.  

Apparently, on two liters of O2, the E tank will last four hours, and the D tank will last two hours.  

So, we didn't have enough tanks to get us through the next day (Friday).  

The girl at the supply company told me they would only switch tanks out.  Meaning we had to give them an empty tank when they gave us a new tank.  But the empty one was at school.  So, logistically, how do I make that work?  

Well, I hate the small details of logistics.  So, right there my brain wanted to stop working.  But, don't most people own two propane tanks for a grill?  So when one goes empty, you switch it out for a new one then you have time to exchange the empty for a new one, right? So, how the heck am I supposed to switch out one E tank?  It seemed to me that I needed at least one more E tank.  

Plus, I needed the E tank that day so I could take it to school on Friday.  

After 45 minutes, and three people later (the second person finally transferred me to a respiratory therapist who was a bit more reasonable and understanding of the situation) I finally got an order for two more E tanks in exchange for one D tank.  That left me with two full E tanks, one empty E tank, and one full D tank.  And they delivered them that afternoon.  

Terri stayed late for me that afternoon because I was on the phone so long.  And during that 45 minutes, Murphy got home from school and wanted to talk to me about his day (which is very rare).  But, there was no way I could talk to him right then.  So, I had to shoo him away to take care of this stuff for Harlie.  Ugh.  Stuff like that just makes me feel terrible.  I know there's no way around it sometimes, but that doesn't make me feel any better.

Friday

Harlie went to school on the bus with Terri with a D tank.  We got Murphy off to school and Tom left a little early that morning.  I got Cooper ready and took him to school at 8:30.  I left there and went to Harlie's school to deliver one of the new E tanks that was delivered the afternoon before.  

I must say that it felt super weird to be carrying in an oxygen tank to school.  When you push the buzzer to get in the school, they now ask how they can help you.  So, I said, "I'm Harlie's mom delivering oxygen."  I'd rather be delivering cookies.  

So, we switched out the E tanks.  And when we opened the new tank - it's not full.  Seriously?  Ugh.  That's when I wonder why I didn't think about the supply company delivering the tanks to school instead of to my house.  Wouldn't that be way easier?

I tell Terri to call me when it starts to get a little low and I will have to come back and pick them up.  Because I just love driving back and forth to her school.  

I left there and went to the gym.  I signed up for the 9:30 TRX class and got the last spot.  On my way there, I called her pediatrician.  I asked if her current ABs treat pleural effusions.  She said she'd call me back.  

Just as the class was starting, my phone rings.  The nurse said that her doc wants her to have chest x-rays.  I can't believe my denial, but I actually asked if I needed to do it now or if I could wait till after school.  She paused and fumbled over her words a bit (probably because she was shocked that I would ask such a ridiculous question).  I said, "Never mind, of course I should take her now."  And hung up.  

Then I went and did the TRX class.  It was hard - not just the work of the class (because TRX is really hard) but my head wasn't all together for a little while.  But, I felt a lot better after.  Then I ran a quick mile on the treadmill and I felt much better.  

Then I went home to eat breakfast and shower.  Because I'm sorry, but I am NOT going to the hospital looking all a shambles in my work out clothes.  No way.  I can't help but think if I look somewhat put together, then I will be taken more seriously.  

I also called our supply company.  For one, I wanted to ask them about getting a portable oxygen concentrator so we wouldn't have to worry about tanks.  Because they are proving to be a royal PIA.  I got a "no."  But, if this turns out to be a chronic problem, I'll work on that.  I also asked her about delivering to school.  She said they don't like to do that because they are afraid they (the tanks) will get lost.  Seems like an easy problem to overcome considering Harlie is the only child in the school with oxygen tanks.  But, that will have to be a fight for another day.  I got other things to deal with right now.  So, then I ask about delivering tanks during the weekend.  She answered, "Only if it's an emergency."  I replied, "but... it's oxygen."  

Am I missing something?  Isn't needing oxygen, kind of important?  Whatever.  Moving on... I ordered more tanks and asked that they be delivered as late as possible in the day.  Because I didn't know when I'd be home.  But, I did think ahead a bit, and brought in the empty tank that I picked up from school earlier in the morning.  

Unfortunately, it's now close to noon.  My, how times flies!  

I realize that I don't know where to take her for the x-rays.  I mean, I know where it is, but I don't know if her doc has to call ahead and order it.  I can't just walk in there and ask for an x-ray.  So, I called her doc again.  I get the receptionist who tells me that they are all busy and they are going to have to call me back.  I can tell she doesn't know how I am or why I'm calling.  And they close the office at noon for their lunch hour.  So, I really need to talk to someone before noon.  

I wait till just a few minutes before, and call again.  Her doc gets on the phone and tells me to go to the ER.  

Well, now I have to feed and walk the dog.  

Then it dawned on me that I have to have the boys taken care of because I have no idea how long I'm going to be gone.  So, I had to make some phone calls.  Of course my friend Bethany (who's got my back - thank you very much!) comes to my rescue and picks up Cooper and keeps him for the day.  I was going to ease her burden by sending Murphy to another neighbor.  But I couldn't reach her.  So, I had to call Bethany again, and ask her if Murphy could ride his bike to her house after school.  Of course!  So, I had to send an e-mail to his teacher asking her to tell Murphy to go to her house instead of coming home.  

I also called my niece Maggie, who said she could come over around 3pm to relieve Bethany of the boys.  Maggie said she could stay until 5pm (then she had to go to work).  Then Tom would come home.  My mom has the flu, otherwise I would have just had her come over.  

Okay, so I got home from the gym at 10:45.  By the time I did all that stuff, it was a little after 1pm.  Now I realize that I have to pick up Harlie and Terri, and then bring Terri back to my house because she needs to get her car.  There's no way she can go to the hospital with me.  Who knows how long I'd be?  

So, I finally got to the ER at 2pm.  OMG.  I had no idea it was going to take that long to do all that stuff.  

The ER is packed and with Harlie's chair and all her stuff, we were kind of a wide load.  There was no seating for the both of us.  So, I stood up most of the time.  I can't remember how long we had to wait, but it was a good long while.  I've never had to wait at the ER with her.  Ever.  And I had to ask them for an O2 tank, because there was no way my small D tank was going to last us through all this waiting, and then to get us back home.  

I got to see a friendly, familiar face - a nurse that we met through the Steelers club.  We've seen her many times in the ER.  So, that was nice.  

Once we got back into a room, things went pretty quickly, all things considered.  We saw two doctors that have both seen Harlie before.  Went over everything and got chest x-rays.  

She was very playful (and didn't look very sick).  

But then a nurse came in to start an IV (they wanted some blood work and wanted a line for IV ABs, if necessary).  Harlie immediately started to cry.  Break. My. Heart.  I tried to prepare the nurse for the fight Harlie was going to put up.  I told her that nothing I do or say helps Harlie.  I sat down on the bed and put Harlie in my lap.  Then I bear hugged her the best I could.  I should have told the nurse to get some help.  But, I just wasn't thinking, I guess.  

Thank God this lady knew what she was doing.  She got it on the first try!  And that's saying something when you factor in how much Harlie fights and moves.  But, once she got it in, Harlie still wouldn't stop moving.  And by now we are laying in a very awkward, uncomfortable position.  Harlie is purple from all the crying and fighting, her oxygen tubing came disconnected, the alarms are buzzing and her sats are in the tank.  The nurse doesn't want to loose this IV, so she calls for help.

Whew!  After a few more minutes, they were done, and we could leave her alone for a bit.  She was wiped out after that!  

Then the doc came in to tell me that her x-rays showed some pneumonia and/or atelectasis (collapsed lung) on the right side.  They want her to stay on the ABs she's already on, but they want to add a med.  They said the med can be hard to find, so they were going to give her first dose while we were there, through her IV.  

They started that at 7pm and said it takes an hour to run.  Thank goodness I remembered to throw some granola bars and an apple in my bag!  The last time I ate was breakfast.  So, I was hungry.  

I was also really, really tired.  And even though I've done it so many times before, the thought of packing her up, carrying all the bags and stuff and getting her to the car, and home, made me exhausted.  It felt like the car was miles away.  

So, I called my sister, Sandy.  I knew my niece, Jordan, was still home from college, so I was hoping they could help me.  I felt so wimpy asking for such a crazy thing.  But I really couldn't help it.  

I asked her if there was any way they could work out going to my house, leaving someone there to watch the boys and then have someone bring Tom to the hospital, so he could drive us home.  

How awesome is it that they were Johnny on the spot?  Sandy and Jordan were already together and out.  So they left there and drove straight to my house.  Sandy called her husband, Rick, and asked him to leave their house and drive to my house.  Jordan stayed  with the boys and Sandy and Rick drove Tom to MCV.  He got there right as we were getting the paperwork done for discharge.  

Awesome!  Thank you so much Sandy, Jordan and Rick!!!  

We left the hospital and went to the 24-hour CVS to get her prescription filled.  No luck.  They were out of it.  They called another pharmacy (the one that usually has everything but isn't so conveniently located) and they were out, too.  Tom called another one, still no luck.  They could order it, but it wouldn't get here until Monday.  So, we went home.  

I guess we got home close to 10pm.  Tom called the ER doc and told her about the meds.  She said she'd do some research and get back to us.  

We went to bed.  And the doc called us back Saturday morning.  

But, I'm going to have to stop there.  I still have more I want to tell you about, but it is super late and I'm running in the morning.  So, I need to get to sleep. 

More soon!
Thanks,
Christy xo 

Late night update for Day 4

So, there have been some new developments. Harlie's secretions are now thin and clear/white, but they are so plentiful! We have been suctioning all day. And her nurse has been doing some chest PT.

A doc from anesthesia came by to talk to me about tomorrow's trip to the OR. Tom wasn't here because he was doing our laundry. My life is so much better when he is here to help me!

Anyway, she did not like the way Harlie looked at all. And while she was here Harlie asked to go potty. So I went and got our nurse who helped me get her there. While sitting on the potty, Harlie did look pretty bad. And blue in the face. Of course it's hard to tell with some bruising already there.

When we got her back in bed and hooked her up to the pulse ox, her sats we're 68!!!! And you could just see how uncomfortable she was. She's still on some oxygen, so when she came off that she desatted immediately and needed the oxygen to come back up. And that's never a good sign. The doc listened to her lungs and said she sounded coarse and was wheezing. She said that she is not well enough to go into the OR tomorrow. And they ordered chest x-rays.

It took forever to get the x-rays and we are still waiting on them to read them. But it looks like she might have atelectasis (collapsed lung) or the beginnings of pneumonia. I don't know. Either way, it's going to slow down our progress.

I feel so bad for her. She really is miserable. And I think I can see that she just feels sick, that it's not just wound pain anymore. She's been coughing a ton, so there's been fresh bleeding from her mouth and a lot of pressure to her head.

She won't let anyone touch her in any way. Not even me or Tom can hold her hand, brush the hair out of her face or wipe the bloody drool from her mouth. If her gown comes down off her shoulders and I try to put it back up, she blocks me with her hand. She's that protective. While I totally get it, it kills me that she doesn't even trust us - her parents. I'm thankful that the staff here seems very understanding and compassionate about it.

It's now been hours since I started this entry. Apparently she has atelectasis and fluid in or around her lungs (they weren't very clear). So they are giving her Lasix to help her get rid of that extra fluid. Her whole body looks swollen to me. So I'm very hopeful that after some Lasix she'll feel better.

Okay, that's it for today. Tomorrow is a new day. And hopefully it will be a good one. Our spirits are still good - so don't worry about us.

Thanks for checking in!

Much love,

Christy xoxo

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Crazy Day

Well, yesterday was a very crazy day.

We left my house at 12:30 to go to one appointment, and didn’t get home until 7:30!!!! No matter how my day is planned, it turns out to be an adventure of some sort.

The short version is that during Harlie’s helmet adjustment, I was holding her, and all of a sudden I realized that she was turning blue. Her nails were blue, her face was blue, and her skin was ashy. We suctioned her really good, thinking there was a plug in her trach. She was still breathing – she just wasn’t getting a lot of oxygen. We immediately took her to her pediatrician. Within minutes they started a breathing treatment and oxygen. And she pinked right up and gave us a big smile. Whew! That was scary.

But she has to be on oxygen – the second the oxygen is away from her trach, her sats go way down. (Luckily, we know from her appointment on Friday that none of this is cardiac related.) So then we went to St. Mary’s for chest x-rays. They came back that she has an infection and atelectasis (the collapse of part or all of a lung by blockage of the air passages). Her doctor gave her another shot of Rocephin (I’ve lost count of how many of these she has had to have) and will give her another one this afternoon. She will also get her last shot of the season of Synagis (her RSV shot). They will start those again in the fall.

Anyway, we are giving her breathing treatments every 3 hours and chest PT every 2 hours trying to help her get that gunk out of there. We are doing all we can to keep her out of the hospital. But if we can’t get her better soon, that will be the next step. So, with the breathing treatments, pt, the shots and a different antibiotic, hopefully she’ll bounce right back. The good thing is that my disappointment over the results of her surgery can now be fully explained. It has nothing to do with her heart. So, hopefully, once we get this infection under control and get her lungs clear, then we should see all the good results of her heart surgery.

It is a little scary to me that this could happen despite the close watch we all have on her. She’s been seen by numerous doctors, cultures have been taken; she’s been on antibiotics since the beginning of March...still this happens.

And I’m still learning – not only all this medical stuff, but learning to trust myself. On the way to the helmet fitting, her breathing was very labored. I called her doctor and told her that it was unlike anything I’ve heard before and I was starting to get really worried (and this is REALLY odd, but I’m not a worrier, if I were, I would have already gone off the deep end). And an hour later, she turned blue. Lots of lessons learned.

Well, that’s it. I have to go. Thanks for checking in. Please send Harlie some good thoughts and prayers that she fights this at home and not in the hospital. Thank you.

Take care,
Christy