Post-Op Day 4 and 5

Another tough day.  To cut to the chase, Harlie is sick.  She is worse than she was yesterday.  Which is definitely not the direction we want to go in.

Post-Op Day 4

They changed her meds.  They took her off the Gentamicin and Clindamycin and put her on Vancomycin and Zosyn.  All IV meds.

She has been suctioned about a hundred times today.  And she sounds so bad.  You can hear how awful her lungs are from across the room.  She's been sleeping 99% of the time.  We have to force her out of bed to try to go potty.

She's even worse now - at 6pm - than she was earlier today.  She desperately needs a bath.  So, we started to give her one (in the bed, of course) and the second I started to lay her down flat on the bed, she immediately desatted, turned blue and struggled to breathe.  We had to abort the bath.

They are going to take another x-ray and try upping and adding an additional diuretic med.  And they are considering moving her back to the ICU.  At this point, her current nurse and I, believe she is too much for the floor.  She needs more.

~~~~~~~

I wrote the above yesterday (Sunday).  Things got crazy, and then it was way too late to write.  It is now Monday morning at 8am and it is MUCH easier to write about yesterday and last night now that she had a good night.

Yesterday she was definitely going in the wrong direction.  She really scared me when we tried to do the bath.  It wasn't that she just desatted - she was struggling to breathe.  After that it was "only do what you absolutely have to" and it was obvious that she was going downhill.  I've been around and seen enough to know that things can turn quickly.  And I really thought that we were heading in that direction.  They agreed, because they transferred her to the CICU around 10pm or so.  They immediately rounded on her and within minutes they were busy helping her.  They got another EKG.  They stopped her feeds until things improve.  They got another chest x-ray.  And they hooked her up to BiPAP.  I thought they said CPAP, but I was mistaken.  BiPAP provides her a little more breathing support.

She normally fights anything that helps her breathe - but within three to four minutes, she slowly relaxed and fell asleep.  Her body is so freaking tired.

Over night, since her body was finally relaxed a little, she peed over a liter!!!  Woohoo!  You can already tell a difference...

Post-Op Day 5

And she's been awake watching TV for the last 45 minutes.  That is the most she's been awake since her surgery on Wednesday.

They need to get more blood for labs and they want to see if they can get a new IV in.  They don't want her fighting or getting all worked up, so they are going to give her some sedation.  Hopefully it works and I can turn her screws all three times at once, so I won't have to do it again today.  That would be awesome!

Well, it's 9:35am now and her nurse gave her a dose of Versed, Morphine and Valium and she was not relaxed.  She was still putting up a huge fight.  So, her nurse gave her another dose of everything and she STILL fought.  It took four of us to help get the IV in.  She wanted to put a larger needle in and she got it in, but Harlie fought so much that she lost it.  Crap.  They got what they needed for labs, but they didn't get that IV in.  I was able to turn her screws, though.  Since she was on a lot of meds, I took advantage and turned them three times to get it over with.  I also cleaned her pin sites, too.

Her nurse said that the two of us would be asleep on the floor with as much as she gave Harlie.  And she's STILL awake now.  She kills me.

It is now 11:20am, and they rounded on her.  They took x-rays last night and this morning.  And they said that her lungs already look better than last night.  Thanks to getting rid of one liter of fluids!  They also had more questions about her echo (ultrasound of the heart).  They have never been able to get a good study (because she fights so much).  So, the doc said she wanted her to be sedated again to do it.  When the nurse told her about her meds from earlier, she said to add Ketamine.  And more Versed.

It took twice the amount they initially thought to get her calm.  Crazy.  So, she's getting the echo now.  Hopefully that will answer all their questions, and will give us a good report to ease our minds.

It is so nice to see her so relaxed (look at how her leg is crossed).  Right now she is feeling no pain and that makes me feel less pain.

I know I make light of a lot of things.  And I joke about a lot of things.  I'm sure there are many a nurses/doctors out there that have wondered if I get how complicated she is.  I do.  I assure you.  But, it is SO hard to worry like I did last night.  My stomach hurt so bad.  And it's not a hurt that I can just stop.  What if she continues to get worse?  What if the meds don't help?  What if her heart and body just wear out?  All of that could happen.  We are not in control as most would like to think.  And you realize that real quick when you're standing by your child's bedside.

I stayed with Harlie and her nurse until Harlie went to sleep for the night.  Her nurse said she would be in her room the whole night.  And she said that she would most likely sleep soundly all night.  So, I left after midnight and took a cab back to the hotel room.

It would have been easy to be really sad and depressed at that moment - sitting in a deserted children's hospital, waiting for a cab while my daughter lay sick upstairs.  I was super tired and worrying like that about your child takes a lot out of you.  But, I had - what felt like the whole world - supporting us on Facebook.  I couldn't believe the outpouring of support for Harlie.  I felt all the strong vibes you were all sending and I let them help me through.

I slept for a few hours and then came in early this morning. It was SO wonderful to hear that she had a great night and that she made some progress.  The BiPAP was the right call.

Well, she started to fight the echo, and they aren't done getting what they need to get.  So, her nurse just gave her more meds!  Geez!

Anyway, I am so thankful that she seems to have already turned the corner a bit.  I think they will keep her on BiPAP throughout the day and night and see where we are tomorrow.  Hopefully the rest of the day will be pain free and restful for her.

Oh, last night I said, "Harlie, who loves you?"  And while her eyes were closed, she pointed to me.  Oh, the little things.

Well, that's it for now.  Thank you so very much for your thoughts and prayers.  All the good vibes you are sending our way are working.  I'm so, so grateful for all the love and support!

Much love,
Christy xo

Pre-Op Day

Last night (Sunday) Harlie didn't have a great night.  I was up until after 1am suctioning her quite a few times and giving her breathing treatments.  Her oxygen saturation levels weren't great, but weren't terrible, either.  I felt like I was holding my breath and hoping that it wasn't the beginning of some sickness.  

As soon as I woke (um, 5:30am unfortunately) I gave her another breathing treatment.  We took a while to get moving and finally left the hotel around 8:30 or so.  Our first appointment was with cardiology at 9:30.  She just saw her cardiologist on Thursday of last week and had an echo (ultrasound of the heart) done then. But, she was very uncooperative (crying, thrashing and pushing the tech away) so the echo wasn't the best.  And crying affects the echo (the pressure causes shunting of the blood in the heart - or something like that).  So, they wanted to try again here.  

The tech here was able to spend more time doing the echo.  But probably only because Tom was with me to help me try to calm her down.  It doesn't hurt.  The tech just puts some goo on the wand and rubs it around her chest.  I guess she might have to press a little, but I'm sure it doesn't hurt.  But Harlie is now super protective of her body and very distrusting of people in hospitals.  

I assume they had the same results as the tech in Richmond on Thursday because the tech went to talk to the doc about it and they are going to go into the OR on Wednesday when she is under anesthesia and get a full echo then.  

After that, we headed over to pre-op.  While there we went over her history, meds, etc.  She was so quiet.  I know she can hear and understand a lot of what we're saying.  Tom and I talked to her a little bit last night and told her she would have surgery, but that we would get through it.  She looked sad, mad or sick in pre-op today.  So, between people we had to see, I asked her if she was mad at me.  She said no.  I told her I loved her and she didn't look at me.  And she didn't tell me back.  Ah, and so it begins.  

Then we met with someone in anesthesia.  After going over her history (again), she said that Harlie is a very complicated little girl.  Yes, we know.  But, sometimes we do forget what that means to the people who are responsible for keeping her safe and sound while the surgeons do their work.  

And I was reminded of when she had her first jaw reconstruction (June of 2008, she was almost two) and the anesthesiologist came to talk to us.  He said, "Hi Harlie!  I've been thinking about you all weekend!" I said, "Really?"  And he said, "Yes! She's got a lot going on."

Anyway, she asked us if she's ever scared us.  Yes, this is the post when she scared us.  A couple of weeks ago I was chatting with a friend who's been scared of losing her daughter, too.  Okay, all parents are "scared" of losing their kids.  I don't mean that.  What I mean here is when their lives have actually been threatened.  Anyway, she asked me what I'm afraid of with this surgery.  Such an interesting question - and one that is only asked by someone who's been there.  

So, my answer?  I'm going to be completely honest here.  I'm afraid of losing her.  I'm afraid of something going wrong.  I'm afraid that her heart will say - that's enough!  And I'm afraid of this not working.  And that's what occupies my mind - for months - before a surgery.  It feels like we've been on the up part of the roller coaster for a really long time. I'm ready to be on the other side, and have all of these worries behind me.  Then I can focus on her recovery - and making her feel better and happy.  And I would MUCH rather focus on those things.  I have feared Harlie's death long before she was even born.  I suppose that I always will.  It sucks.  And it's NOT the way it should be.  But, I am grateful.  And I will never take her for granted.  Ever.  Considering her prognosis prenatally, every day is a bonus.  I would just like there to be MANY more days.  Like years and years and years of them.  

Okay, enough seriousness...

Harlie was doing a lot of coughing during these appointments.  And she needed lots of suctioning.  And she looked like she felt bad.  Her head was bent down.  She wouldn't answer any questions.  The anesthesiologist asked us if she was sick.  Um, no?  Not yet?  They checked her sats and they were 89.  Whew!  That's great!  And she listened to her lungs - sounded great.  So, she's officially been cleared for surgery.  For now...  Of course they will check her again Wednesday morning. 

We've definitely been worried about her today.  But, the air is different up here (less humid).  So that could explain the stickiness of her secretions.  And she keeps taking off her HME (humidifies the air she breathes), so that doesn't help.  Fingers crossed it's just that.

On our way out of pre-op I asked Harlie if she knew that she was going to have surgery.  She nodded.  Then I asked her if she was scared.  She nodded again.  She really does break my heart.  And I can speak from experience when I say that it really does get harder the older she gets.  I saw a young teen in the pre-op waiting room.  She appeared to have Goldenhar Syndrome, too.  And it made me wonder when it will ever end.  When will she be free from surgeries?  Ugh.  We definitely left there with heavy hearts.  

Our next appointment wasn't until 2:30, with the surgeon.  On our way out of the hospital, Harlie wanted to look at the ball machine in the lobby. 

After a while of standing there, I asked her if she wanted to go to the gift shop.  If it didn't make her feel better, maybe it would help me.  So I told her she could pick out one thing.  But, to be honest, I would have gotten her anything she wanted if it would make things better.  She picked out a Playmobil set.  

Then we walked over to the Squealing Pig for lunch, a favorite from our previous stays.  And we were spoiled, yet again.  Lynda, the creator and organizer of We Heart Harlie had a gift certificate waiting there for us.  Thank you!

Here's to you, Lynda!

Blueberry beer.  Yum!

We ate and drank and Harlie played with her new Playmobil set.  With Tom's help, of course.  She loves it.  It pumps water.  Right up her alley.  

Then we headed back to the hospital for our 2:30 appointment with Dr. Padwa.  

As those close to me know, I have been dreading this surgery and recovery for months!  Well, I am THRILLED to tell you that it might not be nearly as bad as I thought it would be.  

Here's the gist...

The goal is to move her jaw forward 25 mm (which is 1 inch).  The distraction device company then fabricates the device to do that.  So, she feels pretty confident that it will work.  Has she had some that didn't work?  Yes.  But, she's pretty confident that it will work for Harlie.  

And for those of you who don't already know - the surgeon will cut her jaw on both sides then attach this distraction thing on both sides of the break.  Where the bone is cut, it will heal and grow new bone.  Each day, we turn the screws and it essentially re-breaks the bone, promoting more bone growth.  These are my words here, not hers.  

Here's what I expected the device to look like...

  

Or this...

But I was wrong.  And I have never been more happy to be wrong in my whole life.  

Dr. Padwa is using a device that goes under her skin!!!  You'll barely see it.  She will try to use her current scars for the incision so she doesn't make new ones.  And the screw part that we will turn is the only part that will stick out.  And that will be almost behind her ears.  Can you believe it?  

And I thought we would turn the screws for six weeks.  But we will only turn them for about a month.  Awesome.  They expect it to grow at a rate of 1 mm per day, so we will basically plan on turning the screws for about 25 days.  

I also thought we would be inpatient for at least a few days.  I mean, you never know with Harlie.  And today, she said the same thing.  But, as long as Harlie's heart and lungs stay healthy - she will only spend one or two nights in the hospital!!!  CRAZY!  

We will then be discharged, but we will need to stay here in town.  Because she will need to see her again in a week.  She said she likes to see her patients two times per week during the distraction period (those 25+/- days).  But, I can't be flying her up here two times a week.  Well, I don't want to fly her up here two times a week.  I will if that gives us the best chance for successful results.  But, she said she knows a doctor in Northern VA who did his residency under her last year.  She said he has seen enough of these that she trusts that he could see her if that makes things better for us.  So, she's going to see if she can set something up.  

We also talked about me taking pictures of Harlie's mouth and teeth and sending them to her.  She might be able to see what she needs to see that way.  She said she just looks to make sure that the jaw is moving forward.  

So, we'll play that whole thing by ear.  

After the 25 or so days, we will return to have her remove the screw part that will be sticking out of her skin.  But, she will leave in the rest of the distraction device.  The longer that stays in place, the better.  So, I think she said that will stay in for about three months or so.  So, we'll have to return again in the fall sometime to have that removed.  

Whew!  Are you tired of reading about this yet?

It's definitely a better situation than I was expecting.  But, it's also a lot more travel than I expected.  I'll take it, though!

As I've said before - there are no guarantees.  She can't promise us anything.  The unknowns are:

1.  We're dealing with abnormal bone and structure.  There's no guarantee it's going to do what we want it to do.  Dr. Padwa had some 3-dimensional print outs of her jaw that showed what her structure looks like now (with the bone from her leg) and how to place the device.  It's crazy.  They are going to give me the print outs on Wednesday and I'll post them so you can see.  

2.  There are no good studies that can show what is going on in your airway while you sleep.  Of course there are sleep studies - but you can't actually see what's going on in there!  We know there is an upper airway obstruction.  And we know it's in the area of the base of her tongue.  So, that's the area we try to make better.  She said that doesn't mean that there aren't other obstructions that we don't know about.  I really think this is more of a disclaimer.  We're just going to move forward and hope for the best.  And I'm not going to worry about those other things until they come up.  

So, all in all, I think the recovery is going to be WAY better than I thought.  She said she will have some pain and we'll work to keep her comfortable.  

Then they took some pictures of her and we left.  

We walked back to the hotel and stopped by Trader Joes, which is right across the street.  We got some wine and some fruit.  Then Harlie signed "night night."  And it was about 4pm or so?  No where near her bedtime.  

The second we got into our hotel room - she perked right up.  She was right back to her wild self jumping on the bed and being goofy.  All smiles and silliness.

That little sneak!  

So, either your prayers worked and she's really better.  Or her mood is drastically affected by being in the hospital.  

Crazy.  

Oh!  And one of the nurses today told us that the New England Aquarium's main tank has been under construction for months.  And they just re-opened!!!  See, we are so lucky!  I don't know if they replaced the tank or just fixed it.  But they did lower the railings around it so smaller kids could see over it.  Awesome!  So we are going to take her there tomorrow.  

Okay, I have been working on this forever.  I would like to go enjoy my wine and quiet time with Tom.  So, I am signing off.  Please know that even though we feel so sad sometimes, life has a way of giving us something to be happy about.  So, somehow we just bounce back.  

Thank you so much for all your thoughts and prayers!  We are feeling the love!  And we are so grateful!

~Christy xoxo

Post-op Day 6

Overall, today went well. Actually, considering the way things could have gone, things went great and we are pretty happy.

I wasn't able to blog earlier, but after talking (for the 100th time) to ENT, we finally spoke to the actual doc who was going to perform the "procedure" of draining her BAHA site. What he said made sense. He said that there might be a blood vessel that isn't scarring down, feeding the area with blood. So he was going to open it up, going with the same incision that was originally done, and see what was going on. His main concern was potential infection of the hardware (the actual titanium implants) which would royally suck. He said if that was the case, he would have to remove them. Ugh! Please, don't even say such a thing! What a nightmare that would be!

She was scheduled to go to the OR at 12:30, but wasn't taken until closer to 2:00 I think. When we were down there, they went over the consent again (I had already signed it). And while I totally get it, sometimes I just don't have the patience for all that redundancy. And quite frankly, I already heard it (and understand it). I don't want to hear the risks again. I can't back out of it! Then I had to sign consent for anesthesia. Then one of the nurses asked a doc if we had to sign consent for the echo (I'll explain that in a sec) and before he could answer I said, "No." Of course she left to double check and came back and said that I didn't have to sign one.

Anyway, by the time they took her, we had discussed this ad nauseam, and I just wanted it to be over.

Okay, about the echo (echocardiogram, which is an ultrasound of the heart)... Yesterday, cardiology came in to speak with us. They had studied her history and wanted to talk over some things. Since she was overloaded with fluid, they were concerned that her mild leak around her tricuspid valve could have gotten worse. So, they ordered an echo to be done while she was in the OR. That way they could really take their time and get some good images while she was calm. With her single ventricle heart, when she cries really hard it affects her circulation, so the images aren't ideal. And apparently most kids hate getting echos. And since she now has a reputation for not being cooperative and being super self-protective, they didn't want to make it worse for her. Isn't that nice?

Anyway, she seemed to be in the OR forever. It took way longer than I thought it would. And we finally got back to her room sometime between 6 and 7.

The results were great. He drained the area and said all looked great in there, so no worries about the implants. Whew! He put a dressing on it with some kind of tube that's sutured into the dressing, so it stays open for now, but comes out when the dressing comes off. Of course I started to ask when we can go home. No one will say for sure, but it's possible we can leave this weekend (assuming all goes well, of course).

We never heard from cardiology about her echo, so I'm assuming it was fine and that there was nothing alarming. After they took her back into the OR, we went to go get some coffee. By the time we got back, the plastic surgeon was already done with his part (pulling the drains in her leg and neck and cleaning up her mouth and incisions). And they put a nice, pink cast on her leg. Then ENT did their thing and he came out to talk to us. Then the last thing was the echo, which probably took the longest. I was getting impatient (which is so not me) and I told Tom that I felt like we were at a car mechanic's - we went in for one thing and they found 3 other things that needed to be fixed.

All joking aside, this is a great hospital. But I'm ready to go home. And I know that Harlie will recover better, and faster at home. So that's where we need to be. I think plastics is okay with us taking her home whenever we are ready. And we are ready. So, it's up to ENT and cardiology. So, we'll see what they say tomorrow. I doubt very seriously that we'll get discharged tomorrow. But I think Saturday or Sunday is feasible.

So, I'll leave you with another picture of Harlie smiling. This was before the whole OR thing today.

She was such a champ, by the way. No drugs, they just took her back stone sober and she was so brave even though she was scared. I told her it would be over quick and to be strong, and she was!

Well, that's it for today. More tomorrow! Thanks for all your continued support!

Much love,

Christy xo

 

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Cardiology Appointment

Harlie had a bit of a rough day today.  I picked her up from school around 12:45 and went to her speech therapy appointment at 1pm.  After that, we went to her cardiology appointment with one of my favorite doctors - Dr. Gullquist.  Here's the skinny on my concerns:

Higher oxygen saturation levels:  Her sats are higher now than ever before, which is wonderful!  She's lived in some pretty low numbers (60s and 70s) and is now living in the high 80s and low 90s.  In the many conversations I've had with her doctors, this usually meant that if her numbers were higher, that meant that they could close her fenestration.

I will simplify the explanation to this:  during her last heart surgery (called the Fontan) they created a hole (fenestration) in the connection that carries the blood from her body to her lungs for the blood to escape during higher pressures.  If her sats were low, that meant that her pressures were high enough that the blood had to escape through the hole.  As the pressures decrease, the blood passes the hole and does not need to escape, causing better oxygen saturation levels.  I think the normal thought was that then you close the hole and all is well.

However, it is not that easy.  Here is what I understand... leaving the fenestration open (as it is now) carries a low risk of the patient having a stroke.  Performing the actual procedure of closing the fenestration and for the next six months after - carries an even higher risk of the patient having a stroke.  And, because of that, they have to really thin the blood even more than it is now.

Plus, they think that in a failing Fontan (which is what will eventually happen, requiring a heart transplant) that if the fenestration is closed the patient gets sicker, faster.  And if left open, the patient essentially buys a little more time to get a heart transplant.  I'm not saying that if closed they can't get a transplant, but I think the window of opportunity is shortened.

The reasons to close the fenestration are:  1) if the patient wants to exercise more.  So, if she wanted to run, for example, her sats would go down pretty quickly.  The heart and lungs just can't keep up with the oxygen demands, requiring rest times.  And 2) I can't really remember.  Maybe it was to raise the sats a little?  But, I told him that I saw 94 on her monitor the other day and he said that's about as good as they are going to get - even if we close her fenestration.

So, I really don't see any reason to close it.  I'd rather go with the smaller chances of a stroke and a bigger window of opportunity to get her a new heart one day.  I suppose if she ever does want to run or exercise we can revisit the situation then.  Things are always changing and developing in the medical field, so who knows what they will learn in the next 5 to 10 years that might change our decision.  And things are always changing with Harlie, too.  So, we'll revisit this later if need be.

Low heart rate at night:  Over the years her heart rate has been dipping lower and lower at night.  I haven't really been that concerned because I know she has second degree heart block, so her heart doesn't beat at a normal rhythm - it will have longer pauses between beats on occasion, which makes the monitor indicate a lower beats per minute number.

This was expected to happen eventually, which is why her surgeon placed pacemaker leads in/around her heart during her first heart surgery at just four days old.  So, she's sporting a Holter monitor for the night to see what's going on.  I am pretty sure that she won't dip down to her lower heart rates tonight, just so she can make me look like an idiot.

However, if it is true that she is dipping down to lower heart rates than desirable, we will need to go on ahead and get her pacemaker hooked up and working.  Everything is ready to go, they just need to install the battery device in her abdomen area and hook it up to the wires.  I'll discuss the ins and outs of that when the time comes.

Bony protrusion to the right of her sternum:  I recently noticed that she has a bony growth just to the right of her sternum.  Since they cut the sternum for open heart surgery and then use wires to put it back together, the bone can just heal over the wires like that.  I knew that this could happen.  But, I really thought we were in the clear.  It's been a year and a half since her last surgery after all.   So, we do nothing for a long time until we think it needs to be fixed.  Then they can shave the bone down.

When I noticed it, I automatically assumed that's what it was and so I wasn't worried.  But, then today someone made me wonder if it was something more.  Or different.  Then I thought, "what if?"  And then I thought, "what if I miss something big one day because my perspective of what's important is so skewed now?"  Eh, that's just a bony sternum, not a mass of something deadly.  Eh, that's just a screw coming out of her jaw, no biggie.  Oh, her sats are 70?  Whatever, they've been worse, I'll just give her some oxygen. Eh, her heart rate is 35?  Whatev, I'll just lower the alarm setting so it doesn't wake me in the night. 

I will say that I decided I will have to get CPR certified soon.  Couldn't hurt.

She had an echo done (ultrasound of the heart) to check things out.  She has a mild leak in there.  It's still there, and still mild today.  So, that's good.  I don't ask anything about it, really.  Because I'll deal with that problem should it ever arise.  That's what yearly check ups are for, right?  So, you know how they do an ultrasound with the wand (or whatever they call it) and the gel?  Well, it doesn't hurt.  But, try telling Harlie that!  WHEW!  She HATES getting an echo done.  I tried to reason with her, but she would have none of that.  I finally had to just hold her hands.  I did manage to get her to hold my phone so she could play Angry Birds or something.  Holding the phone did get her to calm down a little for a bit, but she wouldn't play it.

So, then Beverly (who did the echo) had to put the Holter monitor on her.  Oh boy.  That was torture.  It's just a bunch of leads stuck to her chest.  With wires attached to the leads.  And then taped to her skin. What's the big deal?   The wires are plugged into a reader and she wears the reader around her neck/shoulder.  Oh, did she cry!  After the monitor was in place, I tried to put her dress back on.  She didn't want any part of that.  If the dress went over the monitor, then that meant she had to leave with it on.  And she was not happy about that!  It was a long struggle to get the dress on her.  I finally bribed her with the promise a Curious George DVD in the car and movies at home.

Once the dress was on, and the monitor went over her shoulder, she has not let it go.

I think she's afraid someone will tug on the wires or something, so she's keeping it close to her.  Although I did manage to get a smile out of her...

When it was time to go to bed, she would NOT - I repeat NOT - let us take off her dress.  So, she's sleeping in it.

The monitor can come off in the morning.  I am so glad she doesn't have to wear it to school.  But, I am not looking forward to removing it!  I will have to see if I can get Terri to do the dirty work for me.  I'm pretty sure she's going to be late to school.

Oh, and I just had to go upstairs and lower the alarm setting on her pulse ox.  We set it to alarm at 40 or below.  And it alarmed enough times that I had to change it to alarm at 35 or lower.  So, maybe it will be indicative of what's been going on after all.  I have to run the Holter monitor back to MCV tomorrow and he said he'll let me know the results early next week.

So, that's it for tonight.  I have way more to blog about and I'm really hoping I can do that this weekend. Brandy is coming over this weekend to help out, so I think I'm going to skip over to the library to get some peace and quiet with my computer during the DAY so I don't have to miss out on sleep.

Thanks!
~Christy

Follow-up appointment

Today, we had Harlie's follow-up with her cardiologist here in Richmond.  It went well.  They did an echo (sonogram of her heart) and it looked good.  She is still breathing pretty heavy, but she doesn't appear to be getting any worse.  


She weighed 33 pounds - 3-4 pounds more than prior to surgery.  I knew she still looked a little puffy!  There is NO way that she has gained that much real weight.  It is all fluid.  So, he upped her Lasix to three times a day (from twice a day).  We'll try that for a week or so and see how she does.  


Her sats (oxygen saturation levels) were pretty low - 76% (98-100% is typical for a healthy person).  Hopefully they will get better soon.


We go back to see him in three weeks.  


She is still sitting on the couch for the most part.  And she is still mad at me.  Or maybe she's just mad in general.  She hasn't even been nice to Murphy or Cooper, either.  She flat out refused to tell (sign) Cooper night-night.  And that is so unlike her!  I know I have to be patient.  She will bounce back.  She will just do it in her own time.  


Thanks!
~Christy

Quick Updates

Wow! Where has the week gone?

My Dad is doing well, considering. I feel so bad for him because he has not been able to eat anything AT ALL since early in the day on Sunday! The only thing they will let him have is ice chips. Yum! Poor guy. Hopefully soon things will start to wake up and start moving for him so he can eat again. They removed about 14 inches from his colon, so I guess you can't go rushing things around.

The biopsy results came back and the tumor was malignant. But it was just entering stage two, it was in the wall of the colon just a little, and it had not invaded any lymph nodes. So all that is good. The hospital has a cancer committee composed of all the different specialties that get involved and they will review his case and present their recommendation/options. That will happen in about two weeks I think.

Murphy has been taking swimming lessons all week (and it will continue next week). I am so happy to say that he is LOVING it! When we went to the pool on July 3rd he did not want to get in the big pool. And when he did, he only hung out on the steps. But, he is a completely different child now! He even told his instructor today that he wanted to jump in the deep end of the pool! I am so proud of him! I'll have pictures from our fun day on Wednesday soon.

Harlie had speech therapy on Tuesday. She put on her PMV (speaking valve) and wore it for about 6-9 minutes or so. Her therapist ended up being the one to take it off because Harlie was breathing very hard while wearing it. The struggle to get her to tolerate the PMV is growing tiresome. Sometimes I can feel myself wearing down on some of the battles. I have to redirect our efforts and change things up a little. Right now we're focusing on potty training.

We had another follow up appointment from her heart surgery. This time it was with her local cardiologist here in Richmond. They did another Echo (ultrasound of her heart). For the most part, things looked good. The only glitch is that he saw some leakage/regurgitation that he has not seen before. Basically, as her heart pumps the blood out to her body, some of the blood comes back in. He said a little bit is okay. So, we will go back for another Echo in a month. Hopefully this will not become a problem. We didn't talk about what it means if it gets worse. He didn't seem overly worried, so I'm not - yet.

Well, that's it for tonight.
~Christy

Another busy day

You know, I KEEP telling myself that I will NOT over-fill my day with too many appointments! Yet, I continue to do it!!! What is wrong with me???

Well, I know how it happens. At first there's just one appointment. Great. And then there's one appointment on each day. Then, I find out that Harlie needs to have another appointment done by a certain time. And when I go to schedule it, there's two appointments. Fine, I say. I can handle that. Then something else comes up and there's no other day that works for the other party, or me for that matter, and BAM! We have three appointments in one day. And while that might not sound that bad to you, it is. Trust me. It is exhausting. For all of us.

Today Harlie got another RSV shot. I really can't wait till spring when she doesn't have to get anymore. I am hoping this will be her last year. She's had them for three years now. But, no RSV, so that's good. This shot really hurt her. She was anticipating it. She is definitely becoming more aware about what is going on. So, since she was fighting a bit, I guess it hurt more than usual. She cried for about 20 minutes. And she's NEVER done that! But, she's okay now.

Then I had to go and order her next month's food supply. Then I had to rush home to collect Brandy and all the kids to go to see her local cardiologist for an echo (an ultrasound of her heart). She had to have this in preparation for her upcoming heart surgery. I took Murphy with us because he had a VSD (ventricular septal defect - a hole in between the ventricles of the heart) at birth, that closed up on its own. However, before his surgery this summer, the doctor noticed a murmur, so her cardiologist said he would be happy to take a look. He's good, no issues.

I think Harlie having the RSV shot earlier made this appointment much harder. They couldn't get a blood pressure reading because she was too upset. And the echo wasn't any better. He said it is hard to tell because she was crying during most of the echo. And getting the echo doesn't hurt her. It's just an ultrasound on her chest - but she didn't want any parts of it. But that's okay, her heart cath will tell us all we need to know. She needs to have a cath in preparation for her surgery, as well. That should happen in the next few weeks I'm guessing. Then all the info will go to DC for them to see before her surgery.

That's it. Oh! And her head is getting better. It is less swollen now (the worst was yesterday - it was huge!) But now it is black. Nice.

Take care,
Christy

Fetal Echo Appt.

GREAT news! The baby's heart looks completely normal!!! YAY!! We are so happy and relieved. Dr. Gullquist (Harlie's cardiologist) is wonderful and as he was looking at the screen, he was talking out loud as he saw the heart. I see both ventricles, they look normal, no VSD, no transposition, etc. He answered all my questions before I even asked. And he said that if he were looking at Harlie's heart at this time, he would have seen her defects by now. So, that made me feel better.

So, all looks GREAT! I will go back in six weeks for another look, just to be on the safe side. But we certainly feel great after this appointment. It went exactly the way I hoped it would.

He also mentioned to me that Harlie needs another heart cath this summer. There were some concerns after her last cath in June. He just wants to make sure that all questions are answered and that he isn't missing a window of opportunity if something needs to be addressed. I think we are going to shoot for August. Hopefully her jaw will be unwired by that time, which I think would make me feel a bit better. I mean how much can I put her through in one summer for crying out loud?!

Well, our next ultrasound is Thursday. Along with every other appointment! Next week will be a killer week for us. Hopefully we are on a roll of good things and that everything will work out wonderfully.

Just wanted to share our WONDERFUL news! What a difference to leave a fetal echo with smiles on our faces and hearing "congratulations" on our way out the door!!! Thanks for checking in!

Take care,
Christy