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...
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.
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!