Tuesday, June 30, 2009

Elevator Etiquette, or lack thereof.

So we were at Children's in DC for Harlie's post-op appointment yesterday. The main building has 4 or 5 elevators and they are always busy. And what I mean by busy is that everyone files into the lobby and waits for an elevator. One opens up and everyone practically runs over each other to cram themselves in it. Then the lobby empties out (except for the poor folks that couldn't fit) and more people begin to fill the lobby. Do the people who got there after those poor folks care that they were there first? No.

Most of the time, this doesn't bother me that much. I mean, hey, it's a mean world, you gotta make a place for yourself, right? Well, we're at a CHILDREN'S HOSPITAL people. Which means there are a lot of parents there with disabled children - in wheelchairs. And as I walked into the lobby with Harlie there was a mom with a teenaged child in a large wheelchair. The kind that had his legs extended. And she didn't make it into the elevator that was closing. Which left her and then us. Then the lobby started to fill up again. And we stood there FOREVER it seemed waiting for another elevator. One elevator had a closed sign and another one never made it to the first floor. So it was an unusually long wait.

And as I stood there, I just knew that mom was not going to get her kid on the next elevator. And I started to wonder how many elevators she'd missed. Well, I just happened to be standing in front of the elevator that opened. I held it open and motioned to that mom to come on - and everyone jumped right in front of her, and of course, she couldn't get on. I was SO mad! When the door closed I told everyone in that elevator how sad it was that there was a mom with her child in a wheelchair that had been standing there longer than they had and that they jumped in front of her. They just looked at me and didn't say a word. And I looked around and it appeared that I was the only parent! Everyone else looked like they worked there! Granted, I've been mistaken as an employee before, so I shouldn't jump to conclusions - but still.

How is it that we stand in lines for everything else - but when it comes to elevators it's freaking chaos? And then people try to get on before the people can get off (which is just plain dumb). I just don't get it. Where is the humanity???

And I just keep seeing her face. She looked so tired. I wonder how many times she's watched those elevators fill up. With people that have the ability to take the stairs. It makes me wish that those people in the elevator with me could walk in her shoes for a day. I wonder what they would think of themselves after that. Ahhh, so many wishes, so few granted...

They'll be a better post tomorrow. I promise.

Monday, June 29, 2009

Harlie's Post-Op Appointment

Today we had Harlie's post-op appointment in DC. It went pretty well. Her sats were 77 while were there (on room air).

Side note: On Friday, I decided to take her off oxygen during the day (she still gets it when sleeping). When she's hooked up she just seems to not want to move around much. And I really didn't think that the oxygen was making that much of a difference. I figured if she looked worn out, or had blue nail beds, I'd put her back on. So far, so good. Although I have to admit that under the fluorescent lights at the hospital, her fingers were looking a little blue to me. But I don't think giving her more oxygen will help.

She was fine until we went into the lab to get the blood drawn. She knew very well what was going down and she was NOT happy about it. But they rock there, and got what they needed with one stick (and they didn't need much) so it was very quick and she recovered well.

Then she went to get her x-rays. We got the same woman we had last time (for her pre-op appointment). She is awesome. So quick - and nice - which is wonderful. She put Harlie in a chair and strapped her hands in a velcro holder to keep her arms up. I thought for sure Harlie would hate that. But she willingly put her other arm up so she could strap that one next before she even asked her to.

She looks absolutely miserable in this photo - but she really wasn't. I think she is just so NOT photogenic!





Anyway, they were happy with how things look so far. Her blood work was all good - everything came back to normal since the surgery. Her x-rays looked great. Her incision looks good (although her skin had a little reaction to the steri strips - but that will go away in time). We can't pick her up from under her arms for another 3 weeks or so. I will be very glad when we can do that again.

She was so happy we were leaving. When she had to put a gown on in the examination room, I think she was afraid that we were there to stay. So, when I told her we could get her dressed, she was very happy. She even blew Katie a kiss! Here is her signing that she wanted to get down...



and get in...


the car.


Oh! I have a story to tell you about that happened today, but today was a long day and it is late, so I'll have to write about it tomorrow.

Friday, June 26, 2009

No rest for the medically challenged!

First of all - sorry it has taken me so long to update the blog. I can't tell you how much I appreciate the calls and e-mails I've gotten checking on us. I have sat down to update you numerous times this week, but each time I have to stop and go do something else. It's been an unusually busy week - and not Harlie's fault this time! More about that later.

As far as Harlie is doing - she is doing well, I think. She isn't very active (and I'm not pushing her to be, either). She spends most of the time on the couch watching movies. While sitting and relaxing, her respirations are 75-80 per minute and her sats are in the 60s (sometimes low 70s, but not often) on 1 to 2 liters of oxygen. We realized within a few days that it doesn't matter how much oxygen we give her, her sats stay the same.

Before we left the hospital, her cardiologist said we didn't know where she'll finally settle out. Another thing she said was that this was an "enormous" surgery on her body. So, I need to understand that it will take some time for her heart - and her body - to recover. Knowing that helps my patience with getting her off oxygen. It's a pain to drag around. Oh - speaking of oxygen, I took Harlie to speech therapy on Tuesday (I'm a mean mom, I didn't give her much time off) and when we walked in the building a little boy looked at the oxygen tank and asked "Why do you have a vacuum cleaner"? I said, "I wish it was a vacuum cleaner"!

She's still pretty sensitive about her chest. They removed her external pacemaker wires on Friday. They were sutured in there pretty good. She was not a happy camper. They put those little round bandaids on the spots and when I went to remove them Sunday night, she was MAD! And washing her chest is a little challenging. But, all in all, I think she's getting over some of the trauma of the last two weeks. When she sees me coming to her with water or food, she willingly lifts her shirt and opens her mickey button for me. That's definitely an improvement and it's nice to see her more cooperative side again. And on Saturday night (the day we came home), when I put her in bed I told her (and signed) I loved her and she signed "I love you" back. Ahhh... things are right (in our sense of the word) again.

On Monday night, Tom wanted to go for a walk. He was thinking that it was too hot outside for Harlie and that she just wouldn't be up for it anyway. So, he said aloud to Cooper, "Want to go for a walk with Daddy"? And Harlie jumped off the couch and grabbed her shoes and signed "let's go." Well, that answered that. So, we loaded up the strollers (Harlie's with the oxygen tank and suction machine) and headed out. She loved it. And she's so funny about accessories. She wears them all - hair bows, headbands, sunglasses and hats. Sometimes all at the same time! But, she is very sensitive to sunlight, so I suppose she recognizes the benefits.

Well, back to why this week was so busy...

Murphy attended a week's long sports sampler camp at the YMCA across the street. Today was the last day, and I think Murphy is very happy that he doesn't have to go back. He was in the camp with our neighbor (Phillip) across the street, who is the same age. I took the boys in the morning, and Phillip's mom picked them up in the afternoon. On Thursday morning, through conversation, Phillip told me that Murphy just laid around the previous day during camp. WHAT?!?!? So, I asked the counselor if that was true and he asked me "Did Phillip tell on him"? Then he told me that yes, it was true and that they can't make the kids participate, although they try very hard. I later asked Murphy what he didn't like about sports. He told me that it was too much work. Geez. Today they gave the kids a t-shirt that says "All day I dream about sports". Yeah, right. Not this kid. Well, next year we are going to get him involved in something. I don't know how we're going to manage it, but we'll have to figure it out.

He also went to vacation bible school every night (Sunday through Thursday) of this week. My friend Jennifer took him with her kids to her church's VBS. He really enjoyed it. Each day he couldn't wait to go. And then last night (Thursday) they had a show where they sang songs and danced. It was really cute. The songs were great and very catchy. During the week the leaders asked the kids who they wanted to pray for and they wrote their answers on a board. During the show, they read the prayers aloud. Murphy's was about Harlie. He said that he wanted God to help Harlie since she came home from the hospital from heart surgery. I'm usually really good about not crying about life. For the most part, I'm happy and feel very blessed that Harlie has overcome so much. So, I try not to be sad too much. It's just not healthy for me. But to hear her say it aloud and say that Harlie is Murphy's little sister, well it just made me so sad - for so many different reasons - that I couldn't help but cry. Sometimes I just have to forge ahead and not think about things. So, to have to think about it from Murphy's perspective was a little overwhelming. It must be so hard for him to see what's going on, but not fully understand it.

I've tried to have conversations with him about it - to let him know that he can talk to us about it if he wants. But we don't really get anywhere. For example, one night during the first week of Harlie's hospital stay (Tom was still in DC with me) Richmond had a thunderstorm. Tom's mom called us and let Murphy talk to us because he was scared and he was crying saying he missed us. Well, when I asked him this week if he was scared when Harlie was in the hospital he said, "Yes Mommy, I was scared because it was thundering and I missed you and Daddy". Hmmm, not what I meant, but okay. So then I asked him if he knew that Harlie had surgery on her heart and he said no. Ugh. We've talked to him about it before - numerous times. And I know that he knows more than he's letting on because he's talked to other grown ups about it. I'm just not good at talking about her stuff in terms that he can understand. I guess we'll have to get some education on that, or at least get him in front of someone who knows how. There are so many reasons why having a medically fragile child is hard. But I'll have to save that for another post...

Anyway, I've spent the better part of this week (and I'm not fiinished yet) making Harlie's next round of doctor's appointments and getting her therapies back on schedule. So many appointments for one little girl. Ugh.

What's on the horizon? Well, there are some surgical and cardiology follow up appointments. And I'm working on getting her MRI and CT scan scheduled for her upcoming spinal fusion surgery (this winter). And we have to make some decisions on her next jaw reconstruction (ugh). We've decided that we are going to get a second opinion by a surgeon at Children's in DC. We just think that with her heart complications and drug tolerances, she really needs to have surgery in DC. After what we learned and experienced with this last surgery, we are afraid that it might be too risky to go to a hospital that isn't equipped with a cardiac team. And unfortunately, Children's Hospital of the King's Daughters in Norfolk, doesn't have a cardiac department. So, we will see the plastic surgeon from DC in September to see how we feel about him. I just hope that we like what he has to say about her jaw. Because if not, then we will be in one heck of a hard place.

On Monday, we have Harlie's surgical follow-up appointment in DC. I am anxious to see what they think about how she's doing. And then the week after that we have another cardiology appointment with her cardiologist here in town. I love him and I can't wait to catch up with him and get his perspective on things.

Well, this post has been long enough and I really can't devote any more time to sitting here on the computer! I'm neglecting my kids and Brandy is working her fingers to the bone! Literally. She hurt her finger today. I told her to shake it off and to get back to work. No. I didn't really. I was sympathetic. And I let her have our last bandaid. She's fine now.

Thanks again for all your support. We are very grateful!
~Christy

Saturday, June 20, 2009

Good News!

WE'RE COMING HOME TODAY!!! WOOHOO!!!

I am so darn excited that when the nurse told me - I did a little jig. And I didn't even care how stupid I looked. Then, when the nurse practitioner came in to confirm it, I gave her a hug. I love these people. Seriously. There are so many people here that we've come to know over the last two and a half years and I love how they trust me and know that I'm a good mom to Harlie. That I'll take care of her and that if she deteriorates, I'll bring her back. The NP said that there are certainly those moms that just want to go home so bad, they don't do what's best for the child. Well, I've had enough ambulance and helicopter rides to know that I don't want to do something that isn't right for Harlie. That's for sure.

But, really, our only hurdle is weaning her oxygen requirements, and I've done that before at home. Many times. So, she's just waiting on the surgeon's approval (just a formality I think). And Tom's checking us out of the RMH. And then we'll be on the road!

After last night, I couldn't be happier that we get to get her home where she feels safe and secure. (More on that later.)

For now... YAY!!!

Friday, June 19, 2009

Quick Update

Just a quick one because they are taking away my internet access card today. Another family wants to borrow it. Bummer. I can still access the internet through their tv system, but it's not nearly as comfortable. Oh well.

We're still on the floor. They just came in and took out her external pacer wires. That was how they paced her after surgery. They were sutured in, so Harlie was NOT a happy camper. But, she recovered pretty quickly when it was over. That means that the only thing left is her IV. So, hopefully that will be okay until we leave, hopefully this weekend.

She's still breathing pretty fast. And her sats are in the 70s on 40% oxygen. So, we'll see how she does tonight. Hopefully each day she'll show a little more improvement.

She's here, gotta go!

Thursday, June 18, 2009

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

Wednesday, June 17, 2009

Post-Op Day 9!

And she's still in the cardiac ICU!

She did well on trach collar all day yesterday. But for some reason they put her back on CPAP in the middle of the night. But only for a little while. So, she's been on trach collar now since the wee hours of the morning.

Yesterday afternoon she fell asleep around 4pm and slept very soundly (like the best sleep I've seen her have since getting here). When I left at 8pm, she was still sleeping. And she's been sleeping a lot today, too. I suppose with all her work of breathing she's just tuckered out. I hope that's the case anyway.

The plan was to move her to the floor today. They came in today and pulled the central line out of her chest (it went to her right atrium). So, now she can move about more. Ever since they did that, she's been sleeping. So, I still haven't been able to pick her up.

But, they said they are still not comfortable moving her to the floor today. Her secretions are VERY thick and they think that she's too much for the floor to handle today. I found out that the room she was getting on the floor (because her move to the floor had already been set into motion before they changed their minds) was a double room. Maybe with any luck, another night here in the CICU will give them a chance to discharge more patients so we can get a private room.

Last night we had another visitor! It really is such a highlight of my day to get a visitor from home. My friend Lindsay, who just happens to live a few houses down from us, had to work in Maryland and McLean (Northern VA) and she stopped here to take me to dinner. Unfortunately Harlie was sleeping the entire time Lindsay was visiting her. But it was so wonderful to get out! And for the entire time we hung out, I felt like me again.

I feel like I'm in a whole different world when we're at the hospital. And I feel like a whole different person, too. When we're home the complexities of her medical conditions aren't so much in my face. Of course the day-to-day stuff of trach care, and therapies are there. But it's easier to forget about the really serious stuff when we're home. And I have to try to forget about being at my house with my kids and my husband, because I can't live that life now. I have to be here. And to think about how much I miss our life at home makes being here that much harder. And honestly, Harlie's a different little girl when we're here, too. She's mad and she really takes it out on me, especially. And, quite frankly, I'm tired of it. I will be so glad to get back to our life at home. And hopefully that will be soon.

Speaking of visitors, my friend Jennifer came up today. I feel so bad that my friends have to go to such lengths to come and visit. And I am so lucky that they are willing to do so! I don't know that Harlie feels the effects of visitors as much as I do. But I have a feeling that will change as she gets older.



Well, it looks like they want to keep her here for 48 hours after she's been moved to the floor - just to make sure she's okay and back on room air (assuming that will happen in that time frame, which I know I shouldn't do). So, hopefully we'll be able to go home on Saturday. Hopefully.

Thanks for checking in!
~Christy

Tuesday, June 16, 2009

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

Monday, June 15, 2009

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

Sunday, June 14, 2009

Post-Op Day 6 - pm update

Today has been a good day.

At around 3pm they put her on a trach collar to see how she would do. It is now 7pm and it looks like she's doing okay. Of course, she's on a TON of oxygen (75% - holy crap!) and her sats are still only around 70! But she seems happier off the CPAP. And her nurse and I are MUCH happier, too, as we don't have to hear that incessant $%#$% beeping of the vent!

11:24pm

I started to post an update around 7pm - as you can see I didn't get very far. So many interruptions!

But good ones tonight!!!!

My Harlie seems BACK!!! After a few hours on the trach collar she seemed to perk right up. She started signing all kinds of things and was interactive and... FUNNY!!! That's my girl! She sat up and wanted to brush her hair and her teeth and she wanted to wash her hands (which we couldn't let her do yet - too many connections). And she was making everyone laugh by being her funny little self. Granted, she was still breathing fast - but at least it wasn't as labored as it was. And as long as she's acting like she feels better, then it is obvious that things are improving now! WooHoo!!!!

So, the doc said that if she does well on the trach collar all night long and she's fine in the morning, they are going to send her to the floor. I am VERY happy about that. She would lose a bunch of connections and then I could put her in a wagon and get her out of her room for a little bit. Plus, I could start bugging them about discharge!!!

Oh, she started taking off her own diapers. She takes her hands and undoes tabs and then grabs the diaper in the front, lifts up her bum and yanks the diaper up and off. Then hands it to me (or the nurse). I think it's potty training time...

Of course she doesn't want anything to do with me. She wouldn't wave goodbye when I left, or sign that she loves me. Even though I kept signing it to her. Quite frankly, it was a little embarrassing. I'm going to let it slide this ONE time, but that's it.

Here is Harlie sitting up and trying to smile, which is a MAJOR improvement! You can still see something's wrong with her eye...





Well, I really need to get some rest. Unfortunately my whole night was thrown off. I got a call from the RMH that they had to move me into a different room. They have this one area of the house that can be completely cut off from the rest of the house so they put transplant patients in there. They have to be kept separate to keep them from being exposed to germs while they are getting treatment or something. Anyway, so I had to move and it took me forever!

Which is why I am just now finally getting to bed. So, I will update as soon as rounds are done.

Thanks for thinking of us!!!
~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

Saturday, June 13, 2009

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!

Friday, June 12, 2009

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

Our "fun" day

So, yesterday (Thursday) Tom's mom brought Murphy up on the train. He got a kick out of that. Then Tom's mom sat with Harlie while the three of us went to the National Zoo and then to a Washington Nationals baseball game. It was a very long day with lots of walking. But, we're hoping that if Murphy gets to do something fun whenever Harlie is in the hospital up here, it won't be so scary for him.

Here are some photos from the day.

The team rounding on her (tried to take a photo without them knowing so I didn't look too dorky) they were studying her EKGs.



This is her telling me that she wants me to pick her up. I go to hug her, but she pushes me away. She clearly does not want any lovin' she just wants me to pick her up and take her home.



This is the suction for the chest tubes (just in case you were curious).



Murphy's visit didn't have the effect on her I had hoped.



Murphy studying the map of the National Zoo. He kept on telling us which animal he wanted to see next (which of course wasn't "next" in the park). We tried to explain to him that you have to go through the park and see the animals as you go - that you can't just go jumping around from animal to animal! But, no matter how we explained, he didn't want any parts of it. I, unfortunately, just didn't have the patience - or the energy!





There was this place in the Bird House where you could go in the room and the birds just flew (or walked) around freely. Well, I suppose, not "freely" in that they were still in a room - but you know what I mean.



Murphy got a kick out of it and thought they were funny.



Until something pooped on him. Poor kid. He was upset and all we could do was laugh.



This is us at the Washington Nationals baseball game. It is a very nice stadium (or park, whatever you call it).



This is Murphy after eating a thing of cotton candy in under 3 minutes (I had to help him a little bit so he wouldn't get a tummy ache).




Post-Op Day 4

Sorry I didn't update the blog last night. We had a busy day and I was too tired. I'll write about our "fun" activities later, when I have more time.

As far as how Harlie is doing, she's hanging in there. Yesterday she didn't really do anything. The only thing she signed was in the morning at it was "let's go." Other than that, she had no reaction whatsoever to to anything. Not even Murphy. I was hoping that she would at least smile or that I would notice something in her eyes - but nothing. That is definitely NOT the Harlie I know!

Last night as we were leaving the CICU doc asked me if it would be okay to try her on CPAP (helps you breathe) again during the night. She was just on her trach collar (which provides humidified air) during the day and working very hard to breathe. So, they wanted to try to give her a break during the night. Plus, her x-rays were still hazy yesterday, so they wanted to try to get air in there to try to prevent some that stuff from settling down and growing something yucky.

So I came in this morning and she's still on CPAP. Again, she had NO reaction to me at all! It's killing me! I would rather her be signing "let's go" than nothing at all!

Her drainage has been very low, so maybe we're making some progress as far as that goes.

As soon as the respiratory therapist gets back they are going to see if she can tolerate breathing on her own again. Her nurse today thinks that the CPAP might be bothering her because her heart rate is pretty high.

Well, they haven't rounded yet, so I'll try to update after that. Thanks for checking on us!

Thursday, June 11, 2009

Post-Op Day 3

Well, they tried to put her on CPAP (helps you breathe) last night, but she didn't cooperate. It just made her more agitated. And when they checked her blood gas (measurement of how much oxygen is in your blood) it was no better than when she wasn't on CPAP. So, it wasn't worth it to keep her on it. She is still breathing very fast and her nail beds are blue. Her sats (oxygen saturation) are now hanging around 72, so that's a slight improvement.

Her x-ray from last night was hazy, so they are going to get another one today. The nurse said they did lots of suctioning last night, so hopefully the x-ray today will be a little better.

She is completely off the drugs now. Her last dose of Precedex was at 4pm yesterday. She is more awake now, but she's not very happy. I'm sure a lot of that is because she's working so hard to breathe. It is very hard to think about anything else when all your energy is going to breathing. It is hard for me to imagine, as I've never had to work like that. But she spent the majority of her first year doing that, and I remember it all too well. She is a different girl when she can breathe!

Her heart rate is not very steady. So they did a few EKGs this morning and decided to put her back on the pacemaker. Except this time it is only there as a backup for when she drops below a certain rate. I think her nurse said that when her heart rate dropped her blood pressure went very high (they are constantly monitoring her blood pressure with the arterial line). So, hopefully the pacemaker will keep that from happening again.

They have finally started feeding her (the last time she was fed was at 10:30pm on Sunday night!) But they are only giving her half of her normal feeding. And once she tolerates that okay, they will go up to full feeds.

Unfortunately she drained a lot of blood last night. Two days ago (6/9) her total drainage in a 24 hour period was 120 mls (4 ounces). And in the past 24 hours (6/10) her drainage was 460 mls (more than 15 ounces)!!!! Holy cow that's a lot!!!

So, they said that she will stay in the CICU for at least the next 24 hours.

Well, Tom went to Union Station to pick up his mom and Murphy. They said that he can come visit her, he just needs to be screened first. Hopefully he'll do okay with her. Our theory is that if he could handle how she looked after her jaw reconstruction, he can handle anything! I'm anxious to see how she reacts to seeing him.

So, more updates later. Thanks again for all your continued support!
~Christy

Wednesday, June 10, 2009

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!

Ahhhh...Post-Op Day 2

She is finally resting comfortably. It was so wonderful to walk in the door and see her like this...



Of course, when they did rounds they said she was resting TOO comfortably. Go figure. They have weaned her from most of the drugs except the new one they gave her last night (which obviously did the trick). The new drug is also called Precedex, which is a lot easier to spell and pronounce than Dexmedetomidine. Whew. Anyway, she can't leave the ICU until she's off the Precedex and she doesn't have an arterial line anymore. If that arterial line comes out, she could bleed WAY too much, so she needs to have a nurse in the room all the time to make sure that doesn't happen. That was why yesterday was so awful for her nurse. She was very concerned that would happen with all her thrashing about.

They've turned off her pacer for now and she seems to be doing okay. They are leaving it hooked up, just in case, but hopefully she won't need it again. I've asked her cardiologist why we don't just hook up the darn thing for once and for all so we don't have to worry about it anymore, but I can't remember what she said. We had that conversation back in April. I guess I'll be asking her that again soon. Oh, and she can't leave the ICU with the pacer hooked up, either.

The team that rounded said that she drained 120 mls of blood in the past 24 hours (30 mls since 7am today). That's over their 100 mls limit, so I thought for sure they would say they need to stay in. But, they said they were going to take them out. I was happy about that. But, then they said they needed to get the surgeon's blessing and he said no. So, the chest tubes will stay in for at least another 24 hours. I'm not really that disappointed because I would rather be absolutely certain that it's safe. The last thing we need is to have to put them back in later!

Plus, her history of a chylothorax is still in the back of my mind. She had it after her last heart surgery when she was six months old. They said that complication is unusual after the Glenn (the procedure she had at that time). And it showed up three weeks post-op (which is also unusual) and caused her to go into respiratory distress (the chest cavity fills up with chyle making it difficult for the lungs to inflate, which makes it difficult to breathe, of course). We just happened to be on the way to the pediatrician at that time and her doc had to call 911 when we got there. It was very scary. And she ended up in the hospital for eight more weeks waiting for things to heal.

Anyway, while they say a chylothorax is unlikely after this particular surgery (DKS), I'm not completely comforted. And it would be nice if they could start her feedings while she still has the chest tubes in to see if they drain milk. Now the last time it took weeks to show up, so I know it wouldn't be that easy. But still, if she has the "world's worst scarring" maybe it would be different this time around.

She hasn't had anything in her belly since 10:30pm on SUNDAY night. And today is Wednesday! They said that we could start to give her some Pedialyte slowly, then gradually go to her normal feeding schedule. But, it takes forever for them to put in the orders and get things moving.

Oh, and she earned 26 more Beads of Courage from Friday to Tuesday! I will try to take a good picture of them when we get back to the Ronald McDonald House tonight, so you can see them. I love the Beads of Courage and am so glad that they started the program here. One day it will be so great to explain them to her and see how she likes them.

Well, that's it for my update for now. I'll update again tonight. Thank you for all your wonderful messages. I know it must be hard to think of something to say, but just knowing that you're thinking of her, and us, makes all the difference. Sometimes when I get overwhelmed with all of her complexities, I want the world to stop. It is hard to think that everyone else goes on about their daily lives. I know that's silly and juvenile (and impossible, duh!) but that's the way it feels to have this kind of life. I don't feel this way when we're home and she's playing. So, even though you can't stop everything, just knowing that she's in your thoughts makes me feel less alone somehow. So, thank you for that.

Tuesday, June 9, 2009

Cutie Pie joins the WWF

Don't they say that sometimes your best trait, is also your worst?

Well, that would apply to Harlie. She is one stubborn, feisty little girl. Today has been a true challenge. I don't think I could say she's doing "well." I mean, medically, in terms of what's going cardiac-wise, she may be doing well. But on the outside, she has had a ROUGH day.

I think she has changed positions every two to three minutes all day long. They've pumped her full of all kinds of drugs, but none seem to be making her comfortable. One doc suggested that maybe it was too much and that's what's agitating her. I think I might agree with that. He said that he's afraid to keep giving them to her because he doesn't want her to stop breathing. Good reason.

But, literally, someone has had to stand next to her, at times holding her down. ALL DAY LONG! And I am not exaggerating. Her nurse (and the nurse of the child next to her) have had a major work out today. They are exhausted and one just said that when she gets home she's going to need a drink. I tried to tell Harlie that she's going to develop a bad reputation.

Harlie is trying her best to sit up (and then falls asleep and falls over) and stand up. They said that they have never seen a child so active on post-op day 1. After hearing "world's worst scarring adhesions" and "almost never unheard of" Tom said she is an overachiever.

Here are a few pics of her many positions.











Today, she has signed "down" and tried to take her trach collar off (what she does in the morning when she's ready to get out of bed). And then "all done" and "shoes." Do you think she's trying to tell me something?

All kidding aside, they have been worried all day that she's going to pull one of her tubes or lines out. She is truly wild and just will not settle down. One nurse said that her name would be Cutie Pie in the WWF (World Wrestling Federation). It has not been a fun day for us (not that any day in the hospital is fun). But one thing I've noticed about myself is that when things get hard for me to see or deal with, I escape by talking about some funny movie or show or something. I've done that enough times now that I completely recognize that I'm doing it. But, I suppose we each have a coping mechanism. Mine's just kinda weird and makes me look like someone who doesn't have a grip. But, unfortunately I do.

They said that they are going to try Dexmedetomidate to see if that calms her down. I've never heard of this drug and might have to do some looking to see what it's about. I know they don't want her to wake up tonight, but first thing in the morning, I want them to take her off all these drugs. The more I watch her, the more I am thinking I agree with the doc that suggested maybe the drugs were the problem. She's signed "glasses" a few times (which is what she says when she's outside and wants her sunglasses. She is very light sensitive so she wants to wear them.) Then I think she signed "squirrel" which tells me that maybe she's dreaming or hallucinating. I think I would rather her be in a little bit of pain than be confused and anxious due to the drugs.

Looking back on the day, it seems the more drugs they gave her, the worse she became. And maybe if she felt a little more she wouldn't want to move around so much! And if she wouldn't move around so much, she would bleed less, so she could get the chest tubes pulled, which would mean she wouldn't need the drugs anyway! Kind of feels like we're running in circles, you know?

If they could pull the chest tubes tomorrow, that would help a lot. They said that they are more uncomfortable than the sternotomy (chest incision). They determine when it's safe to pull the chest tubes by how much they have drained in the past 24 hours. She drained very little Monday night, but all the moving about she did today definitely made her drain a lot more. The magic number is 100 mls (which is just over three ounces) in a 24 hour time period. Hopefully when we get there in the morning, it will be under that.

Well, it is late and the morning will come early. I will give an update after they do rounds in the morning. Hopefully there will be a lot of good things happening.

Thank you!
~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

Monday, June 8, 2009

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

About to go see her

Spoke with the surgeon. Don't have time to write about it now. Harlie's fine and they said we can see her soon. We want to hurry up and eat and go, so that's why I don't have time.

More later.

Waiting to talk to surgeon

Well, we were moved to the consultation room to wait for the surgeon, Dr. Jonas. While we wait, I thought I would post some pics from earlier. This was after Harlie was given the Versed.





More later.

11th surgery taking place...

We've gotten a few updates since they took her back. I wanted to post them as I got them, but it took us a while to get computer access from the waiting room. Anyway, here they are...

9:42 - Good morning. Harlie is doing fine and the procedure will begin soon. I will let you know the start time as soon as I hear from the OR nurse.

You know, for the most part we're fine. I thought I would start to cry when they took her, but I didn't. It's always the little things that you wouldn't think that would bother you that get to me. Like in the message above, seeing "Harlie is doing fine." That made me cry. She's doing fine laying on a table with a bunch of lines getting ready to have her third heart surgery. Doing just fine. You know? Earlier, when the cardiac anesthesiologist came in he asked, "So, how's Harlie doing?" Made me sad for a second. Us all knowing what's ahead of her and her not.

9:46 - The first incision was made. Please call me at XXXX to let me know you received this page.

10:51 - Harlie was placed on bypass. Please return to the surgery area within 1 hour to wait for the last update.

11:47 - I just got word that the surgeon only did the DKS. Not the Fontan. I'm disappointed. I absolutely hate the thought of going through all this again. I guess I wanted everything to go well enough that he could do both. Somehow I am reading into it that Harlie had something to do with it. Meaning, what if conditions weren't well enough in there for both? I guess we'll find out when he comes out to talk to us.

And I just see the number of surgeries piling up - this is her 11th surgery. She'll have three more this year. And then her 6th heart cath. And then her 4th heart surgery next year. That will be 15 surgeries before she's three years old.

I'll keep you posted.
Thanks,
Christy

9am Update

Last night seemed to take forever to end. I couldn't go to sleep. Then when I finally did the alarm went off at 2:30am so I could give her some water before the cut off. That is certainly one advantage of having a tube fed child. I can keep her well hydrated prior to surgery. (That and I don't have to worry about medicines tasting yucky.) And keeping her well hydrated makes it easier for them to gain access to her veins.

Once I gave her the water, I couldn't fall back asleep. I'm sure I will be one tired puppy later.

Harlie was a little hard to wake this morning, as she was up late, too. I guess being somewhere different and sleeping in the same room with us made her a bit excited. She danced around and wanted to jump up and down on the bed. Calming her down was not easy. And it is hard for me because I am so happy to see her acting like a typical toddler.

Anyway, I was able to get her diaper changed and mostly dressed (socks, ankle braces, shoes, pants - all but the shirt) before she finally opened her eyes. I thought for sure she would be mad that I was waking her so early. But she looked at Tom and waved "hi" and smiled just as cheery as ever.

Once they took us back we had to swab her down again with those same pre-surgical wipes. She just sat there being so cooperative. I am truly thankful that she gives us absolutely no flack, but sad at the same time. I hate that this has all become all too familiar for her. And you would think that we would be the same way (so used to it, I mean). But it is just getting harder and harder to have to say goodbye. Especially this time, when I know what the recovery will entail. Luckily, the hospital staff understands, and they gave her Versed through her g-tube to help put her at ease. I believe that's also an amnesia drug so she doesn't remember saying goodbye. If only we could have some, too!

Anyway, the cardiac anesthesiologist came in and talked with us before they took her back. He said that he thought that her surgeon was planning on doing both surgeries. He said we should hear how it all went by about 2pm today.

We have a pager and they will page us once they've made the incision, when she's on the heart bypass machine, when she's off the bypass and then when they are done.

They took her at 7:45am, and they said for us to expect at least an hour or so for anesthesia to gain access (she will have numerous lines for numerous purposes). I am so glad that she will be under for all that poking! When I left the waiting area (8:45am) to come to the library to update the blog, we had not heard from them.

So, we just wait. I'll update again when I know something.
Thanks for checking,
Christy