Just about 9 hours to go...

Well, it is 11pm on Wednesday night and tomorrow is the big day! Harlie will be wireless soon! We have to be at the hospital at 6:30am. That makes for an early morning since it will take us about an hour and a half to get there.

Her incisions are still looking pretty bad. I hope you're not too disappointed that I don't have new pictures to show you. hehe

We ended up taking her back to her pediatrician again on Tuesday for another shot of Rocephin. So, hopefully we got a good jump on the infection.

We've been doing the best we can to clean the site (squirting sterile water into the hole with a syringe). But that's really difficult considering the location of the infection. She drools, she vomits, hair gets caught in it and we can't just pour water over it - thanks to her trach.

Water + trach = bad.

I am so thankful that tomorrow someone else will be taking care of that wound and getting it nice and clean. Her surgeon will debride the wound, which is probably pretty disgusting, but she'll be asleep, so that's good. When Brandy and I lavaged (irrigated) the site yesterday, it took all our strength to hold her down. It was an awful experience - for all parties involved. Not mother-daughter moments I wish for, of course.

I am hoping we get the results back from the culture tomorrow. That way we'll be better able to tailor the meds to the specific germ or bacteria. I just hope it's nothing too serious.

I am also hoping that we get to come home tomorrow afternoon. There is a possibility that she'll have to stay overnight, but I'm hoping that doesn't happen. But, of course, I have to have plans for both scenarios. And if you know me at all, you probably know that I HATE logistical details. You leave at x time, drop off so-and-so (don't forget the car seat), then come and pick me up by x time to get to xyz in time for blah, blah, blah.

I'm more of a big picture kind of girl.

Yes, we're going, Hopefully we'll be on time. And hopefully we'll come back some time that day. Perfect plans as far as I'm concerned. No commitments and it's flexible, should things change.

Having to make back-up plans for a situation that might occur just makes me tired. And plans made too far in advance are sure to change, so why waste the energy? Take this procedure for instance. It was supposed to happen today. But last week they called me to tell me they had a problem with the OR schedule, so they had to move us to Thursday. Luckily all the plans that I managed to make in advance were easily changed (like who's watching Cooper and how will he get there, and who is getting Murphy, etc.). Again, logistical details I don't like to think about so I'm going to stop talking about it.

Well, that's all for now. I won't be able to update the blog during day (total bummer) but will hopefully be able to tomorrow night, from the comfort of my own home. Please wish us luck!

Many thanks!
~Christy

8 Weeks Down, 1 To Go!

I just want to say that in exactly one week from today, Harlie will be wireless!!!!

She will be able to open and close her mouth again after 9 long weeks! And I am so glad.

I wonder how much her appearance will change without her lower jaw projecting forward so much. I look at that picture from my last post and realize how different she really looks from just 10 weeks ago. I know I've said it before, but I can't tell you how weird it is to have your toddler's face change in the way that Harlie's has. And looking from the outside in, you look at her differently than I do.

I'm her Mother.

I cannot pretend that she is perfect the way she is. That's not to say that I think anyone looks perfect. But, I cannot ignore the things that make Harlie look unique. That would do her no good in the future. And trust me, she would be mad at me later. If you've ever seen a teenager's reaction to a pimple, you know what I'm talking about.

I need to be able to see the things that require surgical intervention, find the right person for the job, and get it done. And she will thank me later. And I'm not just talking about the benefits to her appearance. I'm also talking about the benefits to the function of what's being altered. Like her mouth.

You know, the thing that helps you breathe, talk, eat and drink?

Yeah, the sooner we get her to be able to do those things, the better off she'll be.

So, Wednesday, February 10th here we come! I'm really hoping it's the start of something really big!

Thanks!
~Christy

Stuff.

I think I might be getting a little worried about a few things.

One - is how darn protective Harlie is getting of herself. Her reaction to any kind of touching (getting dressed/getting undressed, hooking up her feeding, disconnecting her feeding, etc.) is getting ridiculous. The only thing I can think of is that she just doesn't trust us anymore. We have handed her over to complete strangers and she's woken up with her jaw wired shut and in pain. She just doesn't understand what it all means.

The good thing is that she isn't shutting down. Even after we have to struggle to get her pajamas on (for example) she reaches her arms out to be held. And many times it's a struggle to put her down. She wraps her legs around me and will not let go! And she is one strong little girl!!!

Her behavior has changed so much over the last few months. She's NEVER been this clingy. If I could, I'd put her in counseling! I can only assume that we will slowly earn her trust back at some point (if that's even the issue, of course). Until then she will wear us out with all the struggling. She can win some battles - but I have to feed her! And I'm not letting her sleep in her clothes. Call me mean. But, she's just going to have to learn how deal with this stuff. I wish she didn't - but that's the way it is.

Two - She still has HIVES! For crying out loud! We're going on an entire month with hives. I don't get it. It has now been two weeks since she stopped getting her antibiotic (which is what we thought was causing the hives). If they don't go away in the next several days, it's back to the doc and probably to an allergist or something. I've looked at everything she's been exposed to, and there is nothing that I can find that would be doing it. One of Harlie's nurses has been looking into a Latex allergy. That is something that develops over time with lots of exposure to latex. That would be horrible. Seriously. So, please cross your fingers that the hives go away very soon, and we don't have to seek further answers!

Tom and I have a feeling that she's just pissed off in general. Period. We think she's really annoyed that her jaw is wired shut. She just hasn't been her happy self since the surgery. She hates her constant drooling. And add in these stinking hives - she's miserable!

But there is a light! We have a date to get the wires out - February 10th. Nine weeks from her surgery date. Ugh. Can't come fast enough as far as I'm concerned.

Well, that's it for now. More later (of course)!

Take care,
Christy

Excited About...

I know I should write something more emotional and heartfelt about the passing of 2009 and all the challenges and HOPE that 2010 brings...

But I don't feel like it right now. For now, I just want to tell you what I'm excited about.

One - Harlie's hearing aid! Talk about hope!!!! And HUGE potential!!!!! I'm so excited about all the things that could be better with a hearing aid that works for her - and allows her to hear so much more of her world. Our appointment is MONDAY!!! Woohoo!!!

Two - I'm excited about her communication device and all that it could add to her world as well. I'm excited about being able to have a "conversation" with her. And I'm excited for others to be able to communicate with her, too!

Three - I'm excited to get her jaw unwired. Can you believe that it has already been over 3 weeks since her surgery? So, just 5 weeks to go and the wires come out!

Four...



So... What are you excited about???

She's Wireless!!!

Well, today went pretty good, overall. We got there at 5:45am. It's not the early part that's hard, really. It's all the getting up to change over her feeds that wears me out. But, I suppose getting up at midnight, 3am and 4am is going to get a lot more common very soon, so I better get used to it.

Here's Harlie and I in pre-op. She wasn't very happy. She kept going to the door and signing "outside". I let her open the door and she looked out into the hallway and started to cry. I suppose she realized there was no "outside" out there. Just more hospital. She is definitely more aware of where she is and what's going down...



Anyway, the anesthesiologist this time asked us if she would be okay when they took her away from us to go to the OR. I said she will definitely cry. (So I took the opportunity to tell her about our experience with them kicking us out of the PICU last time and that I think it scarred her for life and that other hospitals have stopped kicking parents out - not that I think it did anything at all, but, hey, I tried!) So she suggested that they give her some Versed through her feeding tube to help her relax and not remember anything. So, we said sure. Tom couldn't stop laughing. Although it was funny to see her so happy all of a sudden (that stuff kicked in very fast) I couldn't help but feel like it was just wrong to see your 22 month old drugged.

But, it definitely helped. When the nurse took her away, she just went with flow. So, I think it was a good move. Anything to help her not be afraid.

I was worried when the surgeon came to look at her before going into the OR. The first thing he said (other than "What happened to her chin?" - which was only the 5th time we heard that question. After seeing her post-op from jaw surgery I don't even see a regular boo boo now.) was, "Wow, she's loosened her wires a bit." Huh, didn't notice. But when I looked closely, you could see that her bottom teeth were no longer on top of her top teeth. Uh oh. So, of course, my worrying gears started going.

But, after he was done, he said she looked good. Maybe her wires loosened when she hit her chin the other night. Which totally explains the bleeding from inside her mouth and why she cried for what I thought was an unusually long time. She's very tolerant of pain and doesn't seem to be bothered by much. Anyway, that would be a good thing because it just happened, so no real damage done (we hope).

He said that her jaw felt good and strong and that her teeth looked fine. Her jaw has recessed a bit, but that is to be expected (which is why they wired her bottom teeth on top of her top teeth). Unfortunately, because her jaw could still recess some, we have to give her 6 months before starting the decann process (getting the trach out). Although this was hardly surprising, we're still slightly disappointed. I'm not going to lie, I had dreams that our life would be closer to normal sooner rather than later, but it is not to be - yet.

He was able to remove the wires without having to make any more incisions, so we are very happy about that. He also said that her scars under her jaw are "unacceptable" and that they are definitely going to have to repair them when she's closer to 5. That girl's 5th year is going to be a busy one!!! Don't they realize that she will be in school then and she shouldn't miss that much time??? We've already got her scheduled for her eye repair and prosthetic ear for that year.

Anyway, she was "awake" and not very happy when we got to see her. So we held her for a while and she fell asleep. Her mouth is wide open... like she doesn't have the strength to close her jaw. I guess it's pretty safe to say that her jaw muscles are pretty weak right about now. So we got a good look inside her mouth and she has a lot of teeth! Her mouth bled for a while so she looked pretty rough for a few hours. As you can see...

I think it will take a little more time to see what she's really going to look like. Patience...

At one point the nurse did something to make her cry - and I mean REALLY cry. And, we could hear her!!! It was unbelievable! I was so happy I cried, too! It was SO wonderful!!! She continued to make "sound" throughout the day as long as she exhaled hard enough. It sounds almost like a wheeze. But, it's sound and I'll take it.

Overall, she bounced back pretty quickly and was happy to get home. All day long she kept putting her fingers (and anything else she could get her hands on) in her mouth. It is so nice to see!!! It has to feel good to her! After her bath I gave her one of those sponge swabs on a stick (the kind you get at the hospital if you can't have anything to eat or drink) to clean her mouth out of any left over blood. I was afraid she would gag - because it's pretty large for her little mouth. But, she took it and bit on it and moved it all around with no problem. So, we have high hopes that she will make some good progress orally. After those spots where the wires were heal a little, I'll start to brush her teeth again. Ahhh...

Luckily, Beth, our speech therapist will be here in the morning. I can't wait to see what she has to say.

Well, she also had the ABR test done - but I am way too tired to write anymore tonight. I'll have to tell you about that tomorrow.

Take care,
Christy

Just a few more hours...

Since the hospital here in Norfolk doesn't have wireless, I thought I'd give a quick update before I go to bed.

We have to be at the hospital at 5:30am. So, we drove down tonight and are staying at my friend Melissa's for the night. She will keep Murphy for us tomorrow while we're at the hospital with Harlie. Harlie's scheduled OR time is 7am.

She will be getting her wires removed and will also have an Auditory Brain Stem Response test (ABR). That will tell us if she has an inner ear in her left ear. I haven't thought much about that, really. I guess because I have pretty much been expecting to learn that she doesn't have the ability to hear. Not that I'm being negative, just realistic. Even if she does have an inner ear, surgery to give her a canal to enable her to hear is still very new to the medical field. So, that decision would not be an easy one. Although, it is my understanding that if she does have the ability to hear (even without a canal) we could give her a bone anchored hearing aid. So, I think there are some options, but no sense in getting all caught up in that until we know more.

I will say that it will be very nice to finally know, one way or the other. It is hard to believe that we've made it this long without knowing. I remember right after she was born - I wanted all my questions answered immediately and I just didn't think I could take the waiting. But here we are 22 months later and we have waited just fine. I surprise myself at the amount of patience I have been able to learn!

Well, I better get going. Although I have to get up in less than an hour and a half (at midnight) to turn off her night feed and start Pedialyte, then get up again at 3am to turn off the Pedialyte. Not to mention that I feel like I'm 5 and tomorrow is CHRISTMAS!!! I just can't wait to see her smile without the wires!!!

I'll update as soon as I can! Take care,
Christy

Tomorrow's the BIG day!

So, tomorrow Harlie gets her wires removed and will finally be able to open her mouth! WooHoo!!! It is so hard to believe that 9 weeks have already gone by. And she handled it like a champ. The other night she yawned. Well, you know when you try to not yawn? And your face gets all funny looking as you try to keep your mouth closed? Well, she looked just like that. How frustrating is that? She's gone 9 weeks without being able to truly yawn. Ugh. Boy am I glad that I just saw that the other night and not 9 weeks ago. It would have bugged me the whole time that she couldn't yawn appropriately.


So the other night I was giving Harlie a bath and she was getting a toy out of the basket and fell over and scraped her chin. (Hey, she has a chin!!!) It bled like crazy (thanks to the daily baby asprin), as well as something on the inside of her mouth. Poor thing. Now with her constant drooling, the scab looks all weird. Hopefully it will heal just fine anyway.


Oh! So a friend and I were out shopping on Friday when two people came up and told me that they read my blog everyday. I am so glad that people are coming up and introducing themselves to me! So, thanks Heather and Amy (and Beth from the other week)! I told Tom that I really have to start getting out more so I can meet more people!

Well, I have to go. I have more to talk about, but I have lots to do before we leave (either tonight or tomorrow depending on when we're supposed to have her there). Hopefully I'll find out in a little while what time.

Take care and talk to you later!
-Christy