Post-Op Day 6

Whoa!  Look who's feeling better!!

She smiled twice this morning - and I got one of them on camera!!!  Woohoo!  And she's even changing the channels on her TV.

For the first time in almost a week - she can be focused on something outside of herself and her breathing.  I would say we are on the up and up!

Her night nurse said she had a "fantastic" night.  She slept well.  And they took her off the BiPAP and put her on CPAP to see how she would do with a little less breathing support.  And so far, so good.  

They rounded on her this morning and they are going to leave her on CPAP for at least another day or so. Her x-rays look better on the left - but her right lung still shows a large infection (or lung collapse).  The blood work shows that the antibiotics are working, because her WBC is way down from where it was two days ago.  Based on her cultures, they are changing her antibiotics again.  I can't remember what she's on now. 

Yesterday, her surgeon came by to see her.  On her way out the door she said, "Oh, yeah, and if you hear a pop when you turn her screws, don't panic.  That's normal."  Ew.  But, I'm glad she told me because you can bet your butt that if I heard a popping sound when I turned her screws I would FREAK.  So, maybe now I'll just be SUPER grossed out.  

I really liked how I was able to turn the screws all at once yesterday and not have the task hanging over my head all day.  So, I thought I would try that again.  But, I could only turn them twice.  I just couldn't make myself turn it one more time.  I wish I could ask her which hurts more - turning it once, three times a day, or turning it three times, once a day?  I guess I'm going to have to play with pain meds and turning.

Anyway, she has been a lot more awake today.  Which is a definite improvement.  But, she is still working pretty hard to breathe - even on CPAP.  And her lungs still sound horrible.  They are definitely not rushing her out of the CICU.  I asked her nurse today (who is awesome, by the way) and she said if she were to make a guess as to how things are going to go - she would say she'll stay in the CICU for another few days, and maybe be ready to go home by mid-week next week.  Oh boy.  

Trust me, I am NOT complaining!  Last night, after we left the hospital, Maggie and went to find some dinner.  We walked back toward the hotel and tried a sushi restaurant one of our nurses recommended.  We ordered a glass of wine and celebrated how different things were from the previous 24 hours.  I would rather hang out here for as long as it takes with Harlie improving versus going through another second like Sunday night.  But this does mean we have to think about some logistics.  But it's so hard to plan when you're working around her getting better.  Especially when she still needs the breathing support.  

Earlier today she had to come off the CPAP for a few seconds, and she turned grey.  As soon as her nurse hooked her back up, the color returned to her face.  So, while she IS improving, she still has a ways to go before we can leave the CICU.  

At some point, Maggie has to go home.  I guess we'll send her home Thursday or Friday.  And Tom's mom will bring the boys home on Friday.  It looks like Murphy will get in two practices before the last swim meet on Monday.  

For some reason I've had a really hard time writing today.  It's taken me all day to write this.  I think I'm getting a bit tired.  It's just kind of draining to spend all day, every day in the hospital.  And I haven't felt great the past few days.  I think I'm feeling run down.  Tomorrow Maggie is going to come to the hospital so I can go and do the laundry.  Hopefully that time out will be rejuvenating.

Oh, and we just ordered more We Heart Harlie t-shirts.  So, if you ordered off the blog, you should be getting your shirt in about three weeks.  

We are about to meet the night nurse, so I have to go.  Thank you for all your continued thoughts and prayers!  I am still feeling the love! 

Much love back,

Christy xo

Waiting for Monday.

We moved today.  We are officially in the Heart and Kidney Unit (HKU) vs. the CICU.  We had one of our favorite nurses today in the CICU and our nurses on the HKU seem to be really good, too.  We still have a private bath and shower so I'm pretty comfy, all things considered.

Last night was our best night yet (no beeping!).  We both slept really well.  Our night nurse said that neither one of us moved all night.  And he tried his best to do as little to Harlie as possible.  He said that she kicked the blanket off her during the night, so he could see all of her IVs without having to wake her, which is great.  She normally doesn't like blankets on her - but she is using it as a shield to protect herself and hide.

Since I got a good night's rest for once (and had a nurse that I know is great), I went for a run outside.  Wow - did that feel great! The weather was perfect - a little chilly at first, but perfect once you got warmed up.  And the sun was shining.  Ah, what a little fresh air will do for your spirits!

So, Harlie is very scared and untrusting this stay.  The second anyone walks in the door, she looks at them and says no while signing no AND shaking her head no.  She is using all she's got to get her point across.  No matter what the question - the answer is NO.

Everyone wants to say "I'm just looking" and have her stop fighting and start cooperating.  But, every time she's ever heard that, it has been followed up with a stick.  It's always struck me as odd that they would say "just looking" as they are trying to find a vein to stick.  I mean, I get that they are, in fact, looking - but she's well aware that looking means sticking eventually.

When we moved to another room earlier, they put her in a different bed first.  She saw the other bed and started crying.  For all she knew she was headed back to the OR.  I told her (and signed) that we were moving to a new room but that didn't appear to bring her much comfort.  She just doesn't trust anyone - including me.  I've had to hold her down many times too many. :-(

She's not up for playing or coloring yet.  Maybe I'll work on that tomorrow.  And I requested speech therapy while we're here.  It's the first time I've done that.  The reason I did it is because when we went to lunch yesterday, there was a table set up displaying hearing aids and a communication device (just like Harlie's).  So, in passing I said, "My daughter has that exact one" and then we started talking.  It was a speech therapist.  Huh.

I don't know why I've never thought of that before.  We walked away and I started to think that maybe it would be good for an ST to come and show her some things on her device - medically related, or hospital related.  Maybe things she could say to a nurse?  And maybe it would be good for someone to come and play with her - that's not me.  She loves her therapists at home - all three of them.

So, an ST came up earlier, but she didn't know that device - so she's going to send the same girl I spoke to at the table yesterday to come up tomorrow.  It would be so good to see her play a little.

Three more days of just hanging out.  Waiting.  Hopefully it will stay like that - with no more unexpected trips to the OR.

The surgeon's PA (physician's assistant) came by to see Harlie today.  She said that if everything goes well on Monday and the wound looks good and she can close it as planned, we should be able to go home Tuesday or Wednesday.  She will go home in the brace and she'll have to wear it through summer most likely.  She'll have to wear it all the time - only removing it to bathe.  She said that we are going to have to be really tough about it.  It is so important to limit her movement while the bone is trying to fuse together.

So, I'm guessing that means no gymnastics?  Darn it all.

Well, that's it for now.  I'm going to try to use the next few days to get caught up with some blog posts I've been meaning to write.

Thank you so much for reading and caring!!!
~Christy

Post-Op Day 4 - 11am

No wonderful news so far this morning.  BUT - I do feel a little better and am not AS stressed as I have been the past two days.  So, that's good!

We had a great night nurse last night, and that really helped us be able to go get something to eat (drink a few margaritas) and relax a little.  I called her before bed and they had already decided to get another IV in her (total bummer!).  Her potassium was low and they said that giving that intravenously is hard on the veins, so they had to have two access points.  They had been trying to give her potassium orally the past few days, but since her body wasn't processing what was in her belly, that wasn't working.

They took some x-rays last night to see what was going on.  I can't tell you how much I liked this ICU doc!!!  He was so easy to talk to, funny and so understanding!  He felt her belly and said that maybe the x-rays would tell us something useful.  Tom and I had to leave before they were read (Tom was about to pass out from hunger).  But, this morning, we got a report.  Not at all surprising, she has an ileus and here's a brief description:

Ileus occurs from hypomotility of the gastrointestinal tract in the absence of mechanical bowel obstruction. Presumably, the muscle of the bowel wall is transiently impaired and fails to transport intestinal contents. This lack of coordinated propulsive action leads to the accumulation of gas and fluids within the bowel.  Although ileus has numerous causes, the postoperative state is the most common setting for the development of ileus.  The clinical consequences of postoperative ileus can be profound. Patients with ileus are immobilized, have discomfort and pain, and are at increased risk for pulmonary complications. Ileus also enhances catabolism because of poor nutrition. Overall, ileus increases the cost of medical care because it prolongs hospital stays.


So, there you have it.  We have to wait until things wake up and start moving.  I'm sure she's relieved now though because that means no more suppositories or enemas!  They are not going to help in her situation, so why put her through that torture?  But now they have made her NPO (nothing by mouth - or g-tube) for a while.  And she keeps asking for milk.  Such a good problem!!!  I just love, love, love that she's asking for milk!!!

They are going to keep her in the CICU until things start working again.  And then hopefully we'll be able to be discharged at that point.  I am REALLY hoping that we'll get to leave sometime this weekend.  Tom has to be back at work on Monday, and that would really complicate logistics.  So, now we have to figure out how we're going to get her home so that we're all prepared if she gets discharged over the weekend.  The negative to that is that we have to bring up the car seat and see if she fits in it and if it reclines enough.  And I'm afraid that she's going to see her car seat and think she's going home.  And then she'll be very sad.  But, if she doesn't fit in it, then we have to look at other options and we're afraid that things won't be able to happen over the weekend.

So, that's where we are.  In general, her spirits are pretty good, all things considered.  I know she's so uncomfortable and most likely in pain that pain killers can't kill.  And narcotics slow down the gut, too, so she's off those now.  They switched her to a pain med that's not a narcotic.  You might be wondering why they just didn't do that to begin with, but they had to wait a few days from surgery before they could start those (because of bleeding) and I don't think they work nearly as well.  I suppose you have to treat the most immediate problem at the time, and deal with things as they come.

Even though it has only been five days, it feels like forever.  We are so ready to get her home - where she is most comfortable and happy.  And I'd like to be in a place that doesn't remind me of those first days with her.  Yesterday I saw a mom in a wheelchair coming to visit her baby in the CICU.  She looked tired and sad.  And so did the dad.  Oh, the memories!!!!  I am so glad to be able to say "been there, done that"!!!  Looking back I can't believe we survived it.  But we did and now she's four and we are all in such a better place.  Even if it is hard, we are used to it and aren't so shell-shocked anymore.

Hopefully I'll be able to report fabulous news in the next day or two...

Oh, and I just want to thank all my family, friends and neighbors back home!  Thank you for all you're doing for the boys and their Grandma!  We appreciate all you do more than you know!!!!

Thank you!
~Christy

Post-Op Day 2 - 1st Update

Well, a lot has happened since yesterday.  I'll try to make this as concise as possible.

Yesterday they pulled the central line in her neck.  We got her all cleaned up and changed her trach ties.  She still has an arterial line in her right wrist. She wants that gone.

We also got her in a chair.  Which is kinda funny, because she stays in the same position regardless.  So, I don't really see the point.  It takes an insane amount of work to get that accomplished because of all the lines.  But, she sat there for a while.  She kept on communicating that she wants to sit up - but of course, she can't.  We will have to work on getting her in a more upright position today.  I just don't think that can be accomplished in the hospital chairs.

While she was in the chair, we offered her some Pediasure in a small medicine cup.  And the most amazing thing happened.  She wanted it!  She drank it and asked for more.  And then she wanted to hold the cup herself.  I can't begin to explain how excited I was about this.  This is truly monumental.  I don't know that she's ever realized what hunger is or that it can be satisfied by eating orally.  If we could make that happen, I really think everything about feeding her would change forever.  Once she realizes the benefits of eating and drinking - well, Hallelujah!  Since we were hoping for this (since she hasn't had anything to eat or drink since Sunday) we put in her orders that she is an oral eater - so no tube feedings.  How exciting!!!!  I seriously was BURSTING with excitement and wanted to go running around shouting from the rooftops. All total, she probably drank about four ounces before falling asleep.

As if that wasn't exciting enough - Tom and I were leaving the room to go grab something quick to eat (she appeared to be sleeping) and I told her bye and that we would be right back.  She opened her eyes and and then waved bye.  Since she volunteered that communication, I signed and said "I love you" and you won't believe this... but she signed "I love you" back.  SHE SIGNED "I LOVE YOU" BACK.  And she blew us a kiss.  We were on CLOUD 9.  To put this HUGE event in perspective - it took a month for her to be nice to us after her last heart surgery in July.  A month!  And on Post-Op Day 1 - she signed I love you.  I couldn't be happier!!!

When we left her for the night all was well.  And we were happy.

At 10:30pm, we called to check on her and they had put her on CPAP (which helps you breathe).  They said her sats were getting into the mid-70s (she's in the 80's, baseline).  The problem is that she is in pain.  Coughing hurts her.  So, to avoid coughing, she is taking shallow breaths.  This doesn't inflate your lungs fully.  So, all those little oxygen producing parts get full of gunk.  Being on CPAP will help inflate her lungs.  Walking and sitting up helps, too, but those aren't options right now.

So, that was a real downer.  In typical special needs fashion - you crash from high to low pretty hard.  That part sucks.  Emotionally, that's exhausting.

So, they just rounded on her and after spending all night on CPAP they are going to let her try going back to just the trach collar.  Hopefully the night on it helped enough to get her over the hump.  But, if memory serves, this happened several times in July after her heart surgery.  Being on CPAP overnight just bought her another 24 hours in the CICU.  They want her off CPAP for at least 24 hours before going to the floor.  As of right now her sats are good, so our fingers are crossed.

This morning she was SO miserable.  The worst I've seen her thus far.  And it is so hard to watch her like that.  I can't help her and it kills me!  She is itchy (from the Morphine) and she was super agitated with the CPAP (she doesn't like the help with breathing) and she is way over the arterial line in her right wrist.  They gave her Benadryl and Valium and she calmed down a bit.  And they are taking her off Morphine and are going to put her on something else - Oxycodone or something.

I also think she is even more swollen today than yesterday.  The area around that cut out in the cast is pressing up against the cast.  It looks painful and she keeps trying to get her fingers in there.  Hopefully her ortho surgeon will come soon and let us know if that's normal or safe or something.  It looks horrible to me.  They are trying to get that fluid off her, but it isn't easy.  They are giving her another diuretic (either in addition to, or as a replacement for Lasix) but I can't remember what it's called.

They also put some compression things on her right leg (since it doesn't have a line in it).  I'm sure it's just another thing that's annoying her.

As usual, it has taken more FOREVER to write this.  It is now almost 11am and she is even MORE swollen than just one hour ago.  I am getting really worried.  Her middle is bulging through the opening in her cast.  Her face is way worse.  My heart just aches for her!!!

Tuesday afternoon.  So cute.  In a miserable sort of way.

Getting her all cleaned up on Tuesday.
I think it's funny how you feel compelled to smile in all photos.
Even when torturing your child.  Say Cheese!!!

Drinking Pediasure!  Go Harlie Girl!!!
You make us so proud!

Getting her in the chair.  Looks easy enough.

You might be able to see her right eye and how it looks a little bruised.
The swelling is worse as I type this.

This was first thing this morning (post-op day 2).
She was grabbing and swatting at everything.  

We still haven't seen her ortho surgeon.  I am really hoping she comes by soon.  Please keep your fingers crossed that she can get rid of that excess fluid soon.  She just coughed while on the trach collar and she didn't make a sound.  Complete silence.  Which tells us that even her airway is swollen completely around the trach.  That terrifies me.  

Thanks,

Christy

Recovery Update #1

Okay, just want to let you know that I am no longer pissed.  Sorry for that outburst in my last post.  As it turns out the two teeth she lost are on the bottom.  Whew!  I know it sounds completely ridiculous that I would stress so much and get so upset over baby teeth.  But here's why...

1.  It's always the little things that push me over the edge (momentarily anyway).  I always recover.  So far, anyway.  Perhaps it provides a distraction from the much larger, much more important issues that are hanging above like big scary, black clouds.  Any shrinks read my blog?  I could probably use some analyzing.

2.  Quite frankly, she's already got more than her fair share of facial and dental issues.  The last thing she needs is more issues with her mouth and teeth to distract from her beautifulness.

3.  Do we have to fear losing teeth for all future procedures?  Geez.  And what will we do when they are her permanent teeth?  I'm going to have to find an orthodontist to make her a mouth guard for crying out loud.

4.  And the way she lost these particular two teeth (just in case you didn't know - she lost a front tooth last February after her jaw was wired shut for 9 weeks) just make me cringe.  Seriously.  Shudder!

So, she appears to be somewhat comfortable.  Although I highly doubt that she would agree.  She's already tried to twist all around, which has GOT to hurt.  She's a bit swollen - around her face especially.  But that's probably normal given the trauma, fluids and blood lost and received.

The body cast is SUPER cute - as far as casts go.  And her baby doll has an exact match of a cast.  The pair could NOT be cuter!!!  (If I do say so myself.)

Oh, and before I forget, the surgeon told us that after the cast comes off that she will put her in a brace for a few months.  Fabulous.  During the summer.  That should be fun.

Okay, just wanted to let you know that I've calmed down and have returned to my normal, fun-loving, funny self (if I do say so myself).  So no worries.  All is good in the CICU (cardiac intensive care unit) so far.  Well, again, I doubt Harlie would agree.  She's looking pretty miserable right about now.  Break. My. Heart.

Thanks,
Christy

We're on the floor

Well, we finally broke out of the CICU today. And it worked out well - we got a private room.

Tom's sister, Mandy, came down from Pittsburgh today. She is going to stay here tonight and then she's going to go to Richmond to help with the boys, so Tom can come here. She said that rumor has it that Cooper is a handful. Um, that's true, by the way. But I know Mandy can handle it.

The plan (as of now) is to discharge her sometime this weekend. I have my fingers crossed.

It has been a very long day so this one is going to be short.

Thanks for checking in.
~Christy

Crappy, Crappy Day

Maybe I should try to be more positive. Maybe I should wait a little while before I try to write about today. But it's 9:30pm and I want to get to bed sometime tonight.

So, the morning looked promising. I packed some stuff so I could spend the night, thinking that she would be moved to the floor today.

Well, that didn't go so well. Her sats were in the 60s all day on trach collar. They tried to wean her oxygen down (she can't go to the floor on oxygen that high). But, after getting to 50%, she was clearly blue. So, the nurse had to go back up to 65%. Although, to be honest, she's still a little blue.

And she's been crappy, and mean, and nothing makes her happy! I think her attitude really took a downward turn after the physical therapist came by to work on her. She asked me if Harlie wore ankle braces, and I said yes. She asked to see them. So, I gave them to her. I wasn't paying attention to what she was doing, but the next thing I knew she had Harlie's socks on and was putting on her braces and shoes. I thought, whatever.

Boy am I stupid!!!! No wonder why Harlie was so cooperative - she thought she was going HOME!!!! She signed "let's go" and took off her trach collar - and there was no getting it back on. She cried and cried and it broke my heart! I had to kick the therapist out of our room.

In general, she's mad. Really mad. She reaches out for me and then when she realizes that I'm not going to pick her up and take her out of there she gets mad and swats at me. And if I am even touching her bed in any way, she swats at me some more. I know that I shouldn't take it personally. She has to let her anger out, and that's what I'm here for. But, it is getting harder and harder to deal with it. Especially when she takes whatever is around her trach (collar or CPAP) off and will NOT let us put it back on. She has a mind of her own and fighting that is not easy!

She did have an hour where she seemed comfortable and was her funny self again. She wanted to get a bath. I know this because she signed "bath" and then dumped out the stuff from the basin. Then she pointed to the soap. So I gave it to her. She pumped the soap into the basin then rubbed her hands all in it. Then she rubbed her soapy hands onto her legs and feet. It was quite funny because I really think she was truly trying to bathe. You should have seen her scrub her feet - she was very thorough. She even tried to climb in the basin, but it was too small. Then she grabbed some kelly clamps (they look very similar to scissors) and she tried to use them to cut off her hospital bracelet around her ankle. She SO wants out of here!




A friend of ours (Mike) had to go to Maryland for his job today, and stopped by here for a visit on his way back to Richmond. I was so glad that he came by. For several reasons.

1) it's always nice to have a visitor. For me and for Harlie. I forget that she's not a baby anymore and she is fully aware of who is around her. It has to be somewhat comforting for her to see familiar faces. And she's surely tired of mine!

2) we went out of the hospital for lunch and it was SO nice to get out of here for a meal!!! It was the first meal I've had out of this place since Thursday.

3) he took me by the RMH so I could take some things back to my room without having to walk the two miles carrying them. Since I thought we were getting moved to the floor, I packed my stuff to stay at the hospital, and took the shuttle in since it was heavy. But, since I'm not staying here now, I need the stuff back at my room. But, the shuttle leaves to go to the RMH at 5:30pm, which is WAY too early for me to leave her. Anyway, it just worked out perfectly. And I really, really appreciated the break and the help. So, thank you Mike!!!

Well, when I got back to her room after lunch she was BACK on CPAP! UGH!!! VERY disappointing!!! What is going on?!??!?!?

They said that she will stay in the CICU for another night.

I'm just so disappointed. I don't understand what's going on. In the morning I'm going to ask them what their plan is to FIND OUT what's going on. We're right back where we always go - is it a pulmonary issue or cardiac issue? AAAAAGH!!!!

Personally, I think she needs to get up and out of that bed. Maybe moving and walking around will help her lungs (not to mention her spirits!). The problem is that she has an arterial line in her wrist and a line in her chest that goes right into her heart. And she cannot be moved around with those lines (especially the heart one). I asked if we could let her sit in my lap and they said no. So, I think they need to remove those lines and let her get up and about. I will suggest that at rounds in the morning and hopefully they'll go for it. I know it won't be an easy argument. They like to keep those lines for an emergency. But, I just think we need to break this cycle - we're not getting anywhere!

Oh, she keeps spiking fevers. So they keep taking blood and respiratory cultures, but so far there's no growth. But they have her on antibiotics, just in case. The nurse had a good theory today. She said that they had changed her order for Oxycodone to be given as needed (they were giving it on a schedule). Well, she didn't get her normal dose, and that's when she started acting so agitated (and mean). So, she gave her a dose, plus Tylenol for her fever to see if that made her more comfortable. When that didn't calm her down, they gave her Ativan (for anxiety) and that seemed to help.

So, today was a MAJOR setback. We've never had this much trouble getting her off breathing support. I really hope we figure this out soon.

I'll update as soon as I can in the morning.

Thank you!
~Christy

Post-Op Day 6 - am update

Well, I am very happy to report that she seems better today!!

She is very ornery. And I mean very. But I think that's a good sign. She has been telling us when she wants to get suctioned (which is more like herself - bossy) and she wants to help push the meds into her g-tube. Luckily her nurse has been accommodating her desire to help and she's been letting her help whenever she can. So, that's all good.

She's also helping change her diaper by taking the old one off when necessary. While that's good I, of course, want more! She's not using her signs! But, I am not demanding that today. While I want the moon and stars, I understand that Rome wasn't built in a day, so I'm giving her a break. And I guess the way she's communicating today - anyone could understand!

They took her off the ventilating settings and put her back on CPAP for the day. They don't want to try getting her off until later on today, if at all. They said that they feel that she went even further backwards after the trach collar trial yesterday. So, they want to make sure she makes some progress before trying it again. They did say they wanted to try to wean her down from 60% oxygen today. So, we'll see how that goes.

She still has a fever. We won't know the results from the cultures until tomorrow. But, they have her on antibiotics now, so hopefully that will help.

She's been coughing a lot. Which is a great thing! I know it must hurt a little for her to cough - but I really think that will make a huge difference. So, maybe after she gets some of that goo out of her lungs, her sats will start to rise again. She's still hovering around 70 today.

So, all in all, a pretty good morning so far. She'll stay in the CICU again tonight. Hopefully tomorrow we'll get her off CPAP - for good!

Oh, I took a picture of the get well poster that Kim's daughter, Katie made. Katie just finished up Kindergarten. She drew Harlie's face and Kim said she took special care to make her eyes like Harlie's. I just love that little girl!!! Click on the picture to make it bigger so you can read it. The spelling. Oh so cute!



Thank you for the thoughts and prayers!
~Christy

Post-Op Day 1

Harlie is doing well. Although I'm not sure she would agree with me.




They moved her into a different room during the night. She's still a CICU patient, but I think we are in the PICU (pediatric intensive care unit) and it is a big room with six patients, separated by curtains. They have a pretty busy OR schedule and they have to make room for the kids coming up from surgery today.

When I talked to her night nurse late last night, she told me that Harlie signed for us and signed "hurt" again. So, she gave her more drugs. They really wanted her sleep comfortably all night. They certainly were not ready for her to wake up, that's for sure! I am very glad that she can communicate with them. I guess they would just go by her behavior and numbers, but it's still nice that she can say she's in pain so they can help her.

This morning they said that she almost pulled her ET tube out (breathing tube in her mouth) which would not be good. To explain a little, when she has heart surgery, her chest incision comes very close to her stoma (hole in her throat for the trach) and causes an increased risk of infection. So, they take the trach out, which means they have to intubate her through her mouth. Because of her jaw abnormality, she is a very difficult patient to intubate and cannot be intubated at her bedside (needs to be in the OR). So, her pulling it out would NOT be a good thing!

Evidently some time earlier this morning someone tried to put a trach in, but couldn't get it to go in. So, they called ENT to come and do it. The doc that came extubated her (took the breathing tube out of her mouth) and put a trach in. He said that her stoma had closed a bit, so he had to dilate it so the trach would fit. But he got it and now she looks a lot more comfortable. She was on a ventilator (which beathes for you) but they now have her on CPAP (which lets the patient initiate the breaths). I don't know when they'll take her off CPAP, but I bet when they do, she'll be even happier.

She tried to sit up again (right when we got here) and then wanted to roll over, but she can't sleep on her belly with an ET tube in her mouth! So, they gave her more drugs. Her nurse this morning (again, a familiar one, which I love!) said that Harlie laughs at the drugs they're giving her.

While it was nice to see her neck, it is much better to see her more comfortable.

Her bleeding is good. Meaning that she's not bleeding that much. They will take out the chest tubes when they stop draining. But they know that she already exceeded the limit, so she'll have them for at least another 24 hours. She is still on the pacemaker and they will continue to test her throughout the day to see what her heart does. They are thinking that her heart will be fine soon. She has 2nd degree heart block, but with her corrected transposition defect, she is at risk for developing complete heart block (for the rest of her life) so they are just being cautious. Which we appreciate of course.

Oh, during rounds this morning the doc looked her over and then turned to Tom (who was sitting in a chair) and asked if he was dad. He said yes, and she introduced herself and shook his hand. Then she turned to begin rounds. So, Tom said, "there's mom" and pointed at me (I was standing beside Harlie) and she looked at me and said, "Oh, I"m sorry! I thought you were a nurse"! (boy don't I feel like one most of the time!) I told her I get that a lot. haha

Last night, Tom and I went out for dinner. I know it may sound weird to leave her, but in our case, we know when she's in the CICU or PICU here that she is very well cared for. And with her being sedated (despite her attempts to fight it) it is the best time for us to get out of here. I know by tomorrow I won't be able to leave her. So, we figured we should take advantage of the situation.

We had a good night's sleep and woke early to go for a run. We drove down to the memorials and ran from the US Capitol Building to the Lincoln Memorial and back. When we got to the furthest point from the car (2 miles away) it started to rain (we have impeccable timing). And I mean torrential downpour. It was crazy. It was hard to see because there was so much water running down my face. Earlier we made the comment that we were surprised that there weren't more runners out. But that was probably because they all checked the weather forecast and stayed indoors. Oh well. Us dumb out of towners.

Well, that's it for now. They'll be more later!

Thank you,
Christy

She's Complicated

to say the least.

Dr. Jonas said that his decision to NOT do the Fontan was an easy one. She has the "world's worst scarring adhesions" were his exact words. Not comforting. He also said that it took two hours for anesthesia to get her ready for surgery. He said "two hours is almost unheard of." And the good news? It only gets harder. Gaining access is becoming more and more of a problem. What does this mean to her future!? That's a rhetorical question as no one really knows the answer.

He said that she needs to be monitored very closely over the next year OR TWO, to figure out when she's ready for the Fontan. For years we've heard that they like to do the Fontan about a year after the Glenn (she was six months old when she had the Glenn, and that's pretty standard timing for that procedure) but it can be done as late as age three or four. So, I had to ask what waiting to do the Fontan - a year OR TWO - means for that standard of thinking. His opinion is that there is no magic age. He said that Harlie is very complicated and we can't use the textbook for her. We have to let her tell us when it is the right time. I had to tell him that is the case with every single issue/challenge she has in EVERY specialty. It's growing tiresome. I didn't tell him that, though.

He said that when she's ready for the Fontan, it will be a risky one. The scarring raises the risk of bleeding substantially. The average risk of death or brain damage for a normal Fontan is about 3%. In her case it could be double that. I was thinking that 6% didn't sound that bad. After all, she had a 95% chance of death before she was even born. But he said that 6% in this case is high. But, I'm getting ahead of myself. Those are numbers that I can't worry about right now.

It feels very weird to think of her getting the Fontan in a year or two. Just Thursday night we were slated to have it all done and behind us. And now, on Monday, we are back to waiting. And not for a short time.

Anyway, her recovery time should be about a week or two. She's in the Cardiac Intensive Care Unit (CICU) now and if everything goes well, she'll spend the next five days or so here. That's good for us in that I know her care is topnotch and we can go back to the Ronald McDonald House to try and get some decent rest.

How she's doing now...

We didn't get to see her until later than expected. We came up to the CICU, but they said that her heart rate kept on dropping and her room was full of doctors, so they didn't want us in her room yet. They ended up having to put her on a pacemaker for now. They will take her off the pacemaker tomorrow to test her heart to see what it does without help. I'm keeping my fingers crossed that she will be fine and that it was just the stress and trauma of the surgery that was the cause. They've talked about hooking up her pacemaker for good (she has the leads in her heart, placed at 4 days old, but they are not hooked up to the device yet). I know in the grand scheme of things, a pacemaker is nothing, but it would be nice for her not to need it.

She is being kept sedated for tonight (which is a good thing). The problem is that she has built up a HUGE tolerance for pain medication and they have to push the envelope as far as that goes. There is a delicate balance between keeping her comfortable and suppressing her cardiac rhythm, of course. She's currently on Fentanyl and Versed (among other drugs) and still waking up. So they upped her Fentanyl and put her on a drip. She's still trying to wake up (even tried to sit up, which was not fun to see) and get this - she started signing!!!

She signed "mommy" and "daddy" and when Tom came to her bedside, she waved "hi" with her other hand. Is she something or what?!?! Waved hi, like no big deal. She really amazes me. Then she signed "hurt" and when I asked her if she was saying "hurt" she signed "yes". Then she signed either "mouse" or "doll" (those signs are very similar and her movement was a little sloppy, so I couldn't tell which). I was thinking she was asking to watch Mickey Mouse. But then she signed "monkey", which is what she signs when she wants to watch Curious George (her absolute favorite). And about that time she went back to sleep. Thankfully. Because her "awake" time wasn't all fun and games. She looks just miserable and very irritated. And itchy. I'm sure that's the Morphine. But it was making her scratch and tug and if she grabs a hold of one of those chest tubes I might just pass out myself.

Well, it has taken me forever to write this (over three hours to be exact), as I've had to get up and down a million times and answer a bunch of questions. Oh, another plus, we know the nurse from before and she remembered Harlie. Anyway, I better take this chance to wrap it up for now. I'll certainly have more tomorrow (surprise, surprise) so check back then. In the mean time, please continue to think good thoughts for Harlie's recovery.

Thank you so much for all your comments, e-mails and phone messages. We appreciate every single one of them.

Much love,
Christy

One more day...

Hi everybody,

I’m sorry I haven’t been writing lately. I’ve been keeping myself busy trying to make the time go by. But I must tell you that I loved hearing that so many of you have been wondering where I was. It is nice to know that my entries were missed. I was telling a friend tonight that writing in this journal has really helped me get through this past year. Knowing that you are counting on me to update you helps me find something to be positive about every day. So, thank you.

Well, Harlie had a rough week. We took her back to the pediatrician for an ear check to make sure that the new antibiotics were working. Her ear looked better, but I don’t think the meds are working on anything else that might be causing her coughing. I didn’t see any improvement, that’s for sure.

On Thursday night, our night nurse couldn’t come in and Harlie had a terrible night. She was up coughing most of the night. I think the longest she slept soundly was an hour and a half. On Friday she vomited a lot. And I mean, a lot. We also had another helmet fitting. I really can’t believe how rounded out the back of her head is getting. I just hope that this hospital stay doesn’t set us back on all the progress we’ve made.

Tom’s mom is coming up tomorrow (Monday). Her and Cal will stay here with Murphy while we’re in DC. Tomorrow I will get us all packed and ready to go. I will also find out what time we have to have Harlie checked in for surgery on Tuesday. It will be nice to know what time we are leaving – I guess just to have some plans set in place. Sometimes just knowing the smallest of details in a time of such uncertainty helps a little. Sounds hokey, but it’s true. We will also find out if a room is available for us at the Ronald McDonald House. Now that I've stayed there several times, I am much more comfortable. It is just kinda hard to get used to sharing space with strangers (like a bathroom).

Our social worker from DC called and told me that after the surgery, Harlie will go to CICU (cardiac intensive care unit) since she’s a cardiac patient. That made me feel much better. Plus, it just makes me feel better to know that we will get to talk to her cardiologists there about how this surgery fits in with her cardiac issues. I have a lot of mixed emotions about this surgery. On one hand, I am so glad that it is almost here and I am so hopeful that it will be the “cure” for her breathing issues. But I am also terrified. All her other hospital stays were all longer than originally anticipated and in every single one, we learned something new, that was bad. So, I think being scared about this one, which is pretty darn major, is just natural. Hopefully, this one will be the one to turn everything around for her, and for us. If it works, and helps her breathing, it will have a wonderful domino effect that will be life-altering.

Well, one more full day to go… Please keep her, and us, in your prayers. Now, I am going to try to go to sleep. Thank you for your support.

Take care,
Christy

Surgery Day

Well, it is now 8:45am and the waiting has begun.

Yesterday was a long day. We left our house at 6am and got here at 8am (which was shocking). She had a bunch of tests and we spoke to a lot of people. The anesthesiologist came in and listened to her lungs. He asked me "does she always breathe this hard?" Yes.

He said that he was concerned and wanted to talk with the attending doc about it. I suctioned her and made him listen again. He said it was better, but was still concerned. I told him that she won't sound any better than she does now. He left and came back and said they were going to proceed. It is so funny how our normals are totally different. After talking to her cardiologist and her surgeon, I know we both felt better. We are just focusing on the positives this surgery will bring - no more extra oxygen, no more pulse ox monitor (well, at least not for cardiac reasons - we might just put it on her at night for trach reasons). Plus, she will feel better, work less to breathe and will grow at a much better rate. So, that's all exciting stuff for us.

They have decided to do the Glenn, and not the double switch. The double switch is too risky and the Glenn will be a safer operation. Sounds good to us. Basically, her right ventricle is too small to function as a 2 ventricle heart - so they will make the two that she has function as one. The Glenn is the 2nd out of 3 surgeries used to repair a heart with only 1 ventricle. Here is a link if you want to check it out:

http://www.inova.org/inovapublic.srt/heart/pediatric_services/cardiac_surgery/bidirectional_glenn.html

So, she will have the Fontan surgery when she is between 18 to 24 months. From what we've heard, the Glenn is the easiest procedure out of the three. The surgery takes about 3-4 hours, so we are thinking we will be able to see her sometime after 1:30pm. When we were checking her in this morning the lady said to Tom, "Dr. Jonas is the best - all his patients go home". That was comforting to hear.

After all the prep, the anesthesiologists came to get her at 7:30am. We stood there kind of awkwardly for a minute. Then I said, "Oh! You want me to give her to you?"

As far as how long she'll be here, we're not sure. It all really depends on her and how she does. Well, we just got a page and the surgery officially started at 8:55am. I will update as I can. I can't enter multiple entries in one day, so I will just have to add to the bottom of this one. So check back later. Thank you for all your kind words and prayers. We need them.

Talk to you soon,
Christy

10:58am - Got a page - She's been on the heart bypass machine for about one hour now. All is going well so far.

12:58 - Surgery is officially over. Tom and I spoke to Dr. Jonas and he said there were no surprises, which is great. He said the surgery went well. Anesthesia had a difficult time intubating her (same issue as after her birth). They removed her trach and put a tube in through her mouth. But her jaw abnormality makes getting into her trachea through her mouth VERY challenging. They used a scope or something. Dr. Jonas said they were very proud of themselves for their good work.

I don't know when they will reinsert her trach. Dr. Jonas decided not to remove the PA band. She has two small superior vena cavas (normally you have one big one). He said her two small ones mean higher risk of blood clots. And since they are small, he decided to leave the pulmonary artery in place with the band, to give her some extra blood flow and oxygenation. It will make the next procedure a little more difficult, but the benefit to her now outweighs that.

There was quite a bit of adhesions (scarring) in/around her heart due to the previous operation. This is different for everyone - just your body's way of responding. This just means higher possibility of excessive bleeding. So they will be watching closely for that.

As always, the next 24-48 hours are critical. She will be brought into the isolation room in the CICU (cardiac intensive care unit). We just got word that we can go see her at 2pm.

3:00 UPDATE:

Harlie is now in the CICU and resting comfortably. She has about 100 lines/tubes connected which is normal for this operation. We posted some photos if you would like to see her. Her cardiologist came by and said that she was really happy with how pink she is. Evidently Harlie was blue yesterday due to her poor circulation. I told her I didn't notice and she told me not to feel bad. Most moms and dads don't notice since we see her every day, and she probably has never been really pink anyway.

They are really happy with her weight gain considering her cardiac issues. She weighed 11 pounds, 1 ounce yesterday. We will probably continue to fortify my milk and give her fortified formula at night till she makes it on the growth chart. They are going to leave the ET tube (airway) in her mouth till ENT gets by to evaluate her stoma (hole in her throat) and trach size. They are thinking it might be time to go up a size. I know that needs to happen, but every now and again when we would suction her, some air would go past the trach and she would make a little squeak. When the trach gets bigger that won't happen.

Since she has the ET tube in, they will keep her sedated until her trach is back in place. Then they will start to let her wake up a bit and hopefully get her off the vent. Although it is really nice to see her neck without the trach ties in the way!

Well, I guess that's pretty much it for today. Thank you for all your kind words, thoughts and prayers. I know we are high maintenance right now and we can't tell you how much we appreciate that you take time to check up on us and think about us. Harlie is an amazing little girl and we feel lucky to be her mom and dad.

Love,
Christy xoxo