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

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

Things are looking up!

So far, so good today! They took her off CPAP and put her back on trach collar early this morning, and she's doing well so far! Hopefully this will last. She's still on over 60% oxygen (need to be under 50% to go to the floor).

Last night when I left I told her nurse what I wanted to accomplish today (as far as getting the lines removed and getting her moving around). She told them during the night and they agreed. They rounded late today, so the orders to remove the lines didn't go in until after noon. During rounds they said her platelets were low, so they wanted to give her some blood. But then I heard that was overruled by someone. So, she didn't have to get any.

The IV in her left hand stopped working. So they wanted her to get a new one before they pulled the other lines so they would always have access. Luckily the nurses told me to go sit down during the whole IV thing so I didn't have to be one of the ones torturing her. I've been doing that all the time it seems. The nurse got in on the first try, which is totally awesome! So her arterial line (in her right wrist) was pulled. Now we are just waiting on them to pull the one from her chest (it goes into her right atrium). Once she pulls that I can hold her and let her sit on my lap and walk around if she wants. Although the nurse said that it might be difficult for her to walk around on 60% oxygen. I'm thinking she would drain a portable tank pretty fast. But, she probably won't want to be up for long.

We had another visitor today. My friend Donna came up on the train. She got Harlie to smile for the first time in NINE days!





Doesn't she look so good??!! Oh man, do I miss that face!!! And I couldn't believe this, but as Donna was leaving she leaned down and told Harlie she had to go and to give her a kiss - and she DID! Really, now. And she can't give her mama a kiss?!?!? Ugh.

Well, I guess beggars can't be choosers. At least she was interactive and more herself again. And I got to see her smile, which totally made my day (and Donna's I'm thinking).

Anyway, she'll stay in the CICU again tonight. But, with any luck she'll be moved to the floor tomorrow!

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 5 - last update

Today we had a visitor - my friend Kim. She definitely made the day so much better. And her daughters (Katie and Sadie) made these totally awesome get well cards for Harlie. I'm so mad I didn't take a picture today, so I could show you. I will do that tomorrow, though so you can see. Katie just finished up Kindergarten, and she did such a great job on her card. It is so cute!

Unfortunately, it's been another day, and no improvement. And as I left her tonight and watched her breathe, I would have to say that not only is her respiratory status not improving, it is declining.

Not only did they have to raise her settings on CPAP, they couldn't do another trial to get her off. And they said they were actually going to put her on a rate tonight. Which I believe (I don't have any real experience with ventilation as her time on it as always been so brief) means that she's actually being ventilated tonight (the machine will breathe for her). Again, not the direction in which we want to go.

I spoke with the doctor today about her x-rays. He tried to show me that they weren't that bad. And that there was no evidence of fluid in her chest cavity. Of course, I had to tell him that gives me no comfort. Never in all my experience with Harlie - after HUNDREDS of x-rays - has an x-ray actually diagnosed anything. The x-ray might push you in a direction - but it's the x-ray, coupled with other symptoms and further tests, that actually gets us anywhere.

Anyway, while her x-rays aren't that bad, she's getting worse (again, how much can I believe the x-rays?). Here's a quick video I took of her sleeping today. Notice how long her expiratory length is (especially about 20 seconds into it). And this is on the higher settings of the CPAP.



She didn't sleep that well today. But it is hard to sleep when you're working so hard to breathe.

The last time I saw her breathe like this was when she had a chylothorax (fluid in the chest cavity surrounding the lungs making it very hard to breathe). While I'm terrified of that - I would rather it be that than something worse. I know what the treatment is for that. And while lengthy, it is completely recoverable. As long as you know it is there. Thinking about her declining and not knowing what's going on is WAY too scary - and I just don't want to go there. Period.

Oh, I forgot to mention in my last update that they took some respiratory cultures yesterday and it appears to be growing something. So, instead of waiting to see exactly what it is (might take several days) they went on ahead and started her on an IV antibiotic. While she felt very warm to me, I don't think she had a fever today.

I had to help the nurse change her arterial line dressing today. She said it looked terrible and was a breeding ground for an infection. It was not fun. And, just for the record, the smell of blood is NOT pleasant. The nurse we had yesterday said that she heard that the arterial lines can be very painful. They actually cut down into your wrist and, I guess you could say surgically place the line in your artery. Then they stitch it in place to help keep it from coming out. It was yucky and I had to hold down her arm so she wouldn't go flinging about while the nurse was messing with it. Oh, the things I hate doing to my sweet little girl. I just hope that one day she doesn't hate me for it. I often wonder if she's thinking, "why are you letting them do this to me?" And it kills me.

Oh, I saw Harlie's very first nurse - ever - today. When I was wheeled over (in a wheelchair) the afternoon Harlie was born, Sarah was her nurse. She was her nurse that day shift, and the next. And she remembered us, too. It was so good to talk to her and to talk about those first days. Oh, they were so hard. I feel so lucky that we had her to help us during that time. What a difference she made! Thanks Sarah!

I know I sound like a broken record - BUT - hopefully tomorrow will be better. Hopefully we'll start to see things turn around - for good.

And Kim, thank you so much for coming to visit us. I know it's not convenient in any way, shape or form. So, please know you helped a lot today!

I'll update again after rounds in the am!

Thank you,
Christy

Post-Op Day 5 - 1st update

Well, I was hoping I could start off this post with good news. But, she's pretty much the same as yesterday. She remained on CPAP all night long. During rounds they said that they wanted to start some timed trials to see if she can come off today. The goal was to let her breathe completely on her own for four hours. I think she only made it to three hours before they had to put her back on. And she is still working so hard to breathe! It seems like it's harder for her to exhale than to inhale.

Her oxygen saturation levels are low. Consistently lower than yesterday. Right now she is hovering in the mid-60s! Ugh. That is SO low!!! (a normal persons is close to 100). And when she turns on her left side (the side she prefers of course) she desats down to the low 60s - like 61!!! It's starting to kinda freak me out. I'm wondering if they need to turn up the settings on the CPAP so that it does more work for her. I don't know. I think the doc is going to come in and listen to her again because her nurse said she sounds really congested.

Ugh. I am just praying that a chylothorax isn't brewing.

Well, the doc just came in and they are turning up the settings on the CPAP. Not the direction in which we want to go.

She's miserable. And I am pretty convinced that one of the most depressing places ever is a children's hospital on the weekend. Minimal food is available, the halls are deserted and those of us that are here look sad.

Hopefully things will turn around soon and I'll have a better report tonight!

On a side note, Tom is thrilled that the Pittsburgh Penguins won the Stanley Cup last night. As for me, I am thrilled that the whole hockey playoffs (which started in 2007 I believe) is finally over. Geez! Every time I turned around there was a playoff game on that he HAD to go watch.

Oh, and after he watched the game he ended up getting to meet Jerome Bettis and Hines Ward from the Pittsburgh Steelers. All this while I sat here in the lap of luxury at Children's National Medical Center. Ahhh, life is good!

Post-Op Day 4 - late update

At 7pm tonight I went to go get some dinner downstairs and when I got back to her room, this is what I saw...



Now how darn sweet is she? And while I think she looks quite comfy and cozy, it makes me oh so sad!!! I try so hard not to be sad, and for the most part, she really helps. It is almost impossible to be sad when she's so happy and playful and funny. But, she's not any of those things right now. And I miss her!

As far as how things went today...

They pulled her chest tubes out, which is great. While they tell me that is pretty painful, she should be much more comfortable later. And I really like not hearing the bubbling of the suction. Plus, it's just one less thing to have to worry about.

She had a fever today. They took cultures, just be on the safe side.

They took her off CPAP, but decided to put her immediately back on. Her heart rate was still pretty high (around the 160s, which is very high for her) and with the fever, they just didn't want to tire her out too much. After a few hours, they took her back off CPAP to see what she could do. And then a few hours later, they put her back on CPAP again. They said she will stay on it for the rest of the night.

I forgot to mention that they were thinking that she had a collapsed lung on Thursday. When they took another x-ray on Friday morning (after she'd been on CPAP all night) the x-ray looked "significantly better." So, hopefully another night on it will do the trick so she can come off of it for good tomorrow.

They have been watching her heart rate closely today. They took her off the pacemaker to see what she would do. And then they put a holter monitor on her to get a more detailed look at what's going on. She will wear it until Saturday night and then the doctor will read it on Sunday. The reason why this is an issue is because she already had 2nd degree heart block (her heart beats have long pauses and short pauses, with no rhyme or reason) and with her main heart defect (congenitally corrected transposition) she is at a higher risk for complete heart block. Which would NOT be good, and would make her pacemaker dependent.

Tom left last night. He took his mom and Murphy home after our fun day yesterday. It is always so much harder when he's not here. He always makes sure we eat right and it's just plain better when he's here with me. Since he drove them home last night, he took the car. Which is not that big a deal. The RMH has a shuttle to the hospital during the day. But today was so pretty, that I decided to walk there (it is about two miles, one way). Plus, I knew I was going to have to walk home anyway because they don't have any shuttles back to the RMH after 5:30pm. And I like to hang out with Harlie until she goes to sleep for the night. Luckily, it's staying lighter longer. I just don't want to walk home in the dark.

My mom came up on the train today to spend the day with us. Again, I was hoping that Harlie would have some sort of reaction. Nope. She still just lays there like a wet noodle. No spunk. I am really hoping that she'll start to turn around tomorrow. If she doesn't, I will officially be worried.

As of right now, there are two theories as to why she's not more herself.

One is that all the sedative drugs she was given could have settled into her tissues and so her body could be still feeling some of the effects.

The second is that she is working so hard to breathe, that it's just too hard for her to focus on anything outside of breathing. Basically it's like she's running a marathon. I mean, how much talking, laughing, etc. do you think marathon runners do while running?

Either way, she should be getting better by now!

So, she will remain in the CICU again tonight.

Hopefully I will have a good update in the morning. Thanks for thinking of us!!
~Christy

End of Post-Op Day 2

Today was certainly better than yesterday as far as how Harlie looks.



I was really hoping she'd start to wake up sometime today, but as of 5:45pm she still hasn't woken up. At one point she sat up in the bed and opened her eyes, but she wasn't focusing on me. She was just staring at nothing. I will be so glad to see "her" again and I hope that will be soon.

They gave her some Pedialyte today. They started with 100 mls (just over three ounces) to see if she tolerated that okay. While she hasn't thrown up, she's now tachypneic (breathing too fast). So, I'm not sure what they want to do. She's on Lasix (a diuretic to help her get rid of extra fluid). Maybe her body can't handle the fluid yet. I don't know. I forget that's all connected. We dealt with that a lot for the first eight months of her life, but not since then.

Unfortunately her chest tubes have drained a lot today. In the past 10 hours they have drained more than double what they drained in the previous 24 hours. Her surgeon came around today and I asked him if that could be because she moved around so much yesterday. He said that it didn't necessarily have anything to do with the fact that she moved around, it's just the way her tissues are weeping (yuck). He said that moving around might release the fluid that pools in different areas of her chest, but that it doesn't produce more bleeding.

She's on 60% oxygen and her sats are still only 68% (a normal person's sats are close to 100%). Granted her baseline before this surgery was anywhere from the high 70s to the mid 80s - on room air!!! So to see her on 60% oxygen (which is a lot - room air is 21%) and see her sats still so low, is a little unsettling. But they tell me they will come back up since the surgery she had has nothing to do with her oxygenation. And sometimes it doesn't really matter how much oxygen you give a cardiac patient - the heart can only do what it can do despite the amount of oxygen you give.

Since she didn't get the Fontan, we know that in time her sats will decrease. The only blood that goes to her lungs is from her head then after that blood gets oxygen, it goes to her heart and mixes with the rest of the blood from her body and that's how the rest of the body gets it's oxygen. When you're a baby, your head is large in proportion to the rest of your body. As she grows, her body will become bigger, making it harder and harder for the small amount of blood from her head to provide enough oxygen. We'll just have to see how long she can go before that becomes a problem. Which is one reason why I hate having this hanging over our head for another year or two!

Anyway, it is now 9:35pm and when I called her nurse to ask how she was doing she told me that they are putting her back on CPAP (helps you breathe) because she is still breathing too fast and her lungs are sounding junky and wet. That's what happens when her body can't handle the fluid. So, this is definitely a step backwards. But hopefully after a night with some help breathing it will give her a break and she'll be better tomorrow.

Overall, we didn't make any progress today. She's draining more blood than we would like, she's back on CPAP, she had a fever earlier (they are running cultures, but hopefully it's nothing to worry about), and she's more sleepy than they would like.

She's also having problems with her left eye. When she is really, really sleepy, she can't fully shut her left eye. Normally that's not a big deal because she is a belly sleeper, so I'm sure it gets shut by her sleeping on it, and she only sleeps for 10 or 11 hours at most. But, she's been essentially sleeping since Monday morning and her eye has gotten all dry. They have been putting some ointment in it, but it looks very irritated and now it has this gross film over it and we can't seem to get it off. So, they said if it doesn't look better by the morning, they are going to get someone from opthamology to come and see her.

Oh, we had one of the best nurses ever today. And I am so glad because we are getting her tomorrow, too! And Tom's mom is bringing Murphy to come and visit. They are taking the train (which I hope he will get a big kick out of) and Tom and I are going to take him to the zoo (or a museum depending on the weather) and the Nationals baseball game while Tom's mom sits with Harlie. The hospital got us the tickets for the baseball game - for free! How nice is that?! We are hoping that if Murphy gets to do something fun every time Harlie is in the hospital up here, that it won't be so scary for him. I don't know if he'll get to visit Harlie, I forgot to ask. I think he has to be screened or something. I guess I'll find out tomorrow.

I will update again in the morning after rounds. Thank you!