Back to the doctor

Real quick one...

Harlie's incision is looking red and angry.  Not the whole incision - just at the top where the infection was.  We've been watching it closely and hoping that it would get better.  I took a picture of it on the 13th and then again on the 17th and there is a noticeable difference.

I, of course, was thinking, "eh, it isn't that bad."  You can bet I wanted to believe that, too.  She's been on several antibiotics since May 2nd, 16 days now (most of that time getting IV antibiotics).  How can it not be getting better?  And the antibiotics are awful on her.  I couldn't wait to be done with them!  Which, was yesterday.  So now she's officially off the antibiotics.  Which, if the incision is not looking better, is a bad thing.

So, I couldn't ignore it any longer.  Plus my nurse told me I had to get my head out of the sand (I'm paraphrasing here, she was much nicer about it) and send the surgeon pictures.  So, I did.  I sent her several pictures and she responded by asking if we could come see her today (instead of next week).  Ugh.

Here are the pictures (because I know you want to see, and if you don't, I would like them in my blog for record keeping purposes, so look away if you don't like stitches)...

May 13th, right after removing the dressing. 

May 14th

May 17th

May 17th

See, I don't think it looks that bad.  But, subconsciously I don't want it to be that bad.  And the bottom line is that it should be looking better - not worse.  And it definitely does not look better.  And she's no longer on the antibiotics, so how long till it looks way worse?  Plus, it had some white stuff coming out of it, which may be totally normal, but I don't know.  So, we just can't risk it.  I do NOT want to land back in the hospital!!!  

Plus, I want her to see how she's not putting any weight on her right foot/leg.  I'm worried about what might have happened when she lost her balance the other day.  So, getting x-rays today will be good.

Okay, must run.  Lots to do to get ready to go.

More later!
~Christy

Fevers, still.

So, Harlie still has a fever. And this morning, she had some drainage coming out of her right ear. I was pretty excited about that, because that would give us a source of the fever. And even though her pediatrician just looked in that ear on Monday, as those experienced with chronic ear infections know, it only takes a few hours for "good" ears to go "bad."

So, since I already had an appointment for Cooper's pre-op, I asked if I could bring Harlie, too. Her ear looks pretty yucky. And then her doc brought up a great point (that I completely forgot about!) that her left ear (the one she's missing - with no ear canal) could be infected, and we would never know it. The second he said that - I remembered her ENT in DC saying that this might be a problem. Even though she has a tube in her right ear - her left inner ear could be infected - since there is no way for stuff to drain out on that side. Ugh!

But, in this case, I'm excited because that would give us a source of infection. The unknown is far worse in my opinion. And, quite frankly, I was/am getting worried. Last night she was breathing so hard and fast and her fever was 102.6. But I know that for every degree your temp is up you breathe like 4 times more per minute (or something like that). So, I was hoping that was the case and just watched her closely. And today, before her appointment, her temp was 103.1.

Anyway, she's on meds now and hopefully she will respond and the fever will come down and stay down for good. I just want her to feel better. And soon.

Thanks for checking in,
Christy

It's Signing Time!

So, I took Harlie to the doctor today. She has another ear infection - and this is WITH her tube! Ugh! He said he was more worried about her left lung than her ear. So, he's treating her ear infection with some antibiotics to try and stop her from getting worse - on both fronts.

She has her pre-op heart catheterization on March 10th and she must be "healthy" or they can't do it - which would push everything back. And we don't want that. So hopefully the meds will help her get better soon. When she's this junky we really can't get anywhere with her feeding or speech therapies. Her secretions are way too much for her to handle. We are going through bibs like crazy. Within minutes they are soaked. (Donna - I KNOW you know what I'm talking about!!!). Yes, it's disgusting, but we're pretty used to gross stuff around here.

After I got back from taking her to the doctor I ran to the gym, got 4.5 miles in and then came back home and rushed out for her first speech therapy appointment with our new therapist, Michelle. Harlie was definitely NOT excited about it. It is definitely very different to have to go to the clinics vs. them coming to our house. It takes a few minutes for her to get comfortable enough to get something accomplished. Whereas when they came here, they could just get down to business.

Anyway, after being there a few minutes, Harlie signed "home" and "hat" and grabbed her coat to leave. I love that she can "tell" me what she wants! While I knew we wouldn't get much therapy done with her being sick, I also knew that Michelle and I would have to do a lot of talking to bring her up to speed on Harlie and where we are and where we want to go. She asked me what Harlie knew, what our routine is like and what is on the horizon for her, medically speaking. We talked about communication and what I like/don't like about some communication methods.

Michelle was a sign language instructor, so she likes sign language and is very fluent signing while speaking. I find it amazing, really. So far, I have enjoyed signing with Harlie very much. And, while it certainly has a major negative (not everyone knows sign) it provides the "easiest" form of communication for my family (I believe) so far. So, we have decided for now that signing will be our main form of communication. And when right, we'll start to look at some communication devices (computers) for the future.

Please keep in mind that for the past 6 months, we believed that Harlie would be decanned this spring or summer and verbal communication would be right around the corner. Ha! While that was naive, and probably pretty stupid on our part, it is what we desperately wanted. So, now that we know her next jaw reconstruction will be in September, it will be spring or summer 2010 before that will be a possibility again. So, we have to look a little more long-term and right now, signing is the best means of communication for her and our family.

This means that we have to learn to sign while we are speaking all the time so she can see us using it and so she can better learn - not only signs - but language development. This is called "modeling". And this is also very important because as she gets older, her frustrations will grow if she can't communicate her needs/wants to us, causing unwanted behavior issues.

While Harlie wanted to leave to go home (which she clearly communicated) as soon as she saw Michelle signing to her, she perked up. She watches the signs and immediately tries to do them herself. She knows what signing is and what she gets out of it. It makes me VERY happy to see her communicating and it is so exciting to think of all she will be able to say!! Michelle showed me some tips on how to teach her to string the signs together (important for language development) and by the end of the appointment she signed "I want to go home" vs. "home" and "hat". Crazy, isn't it?!?! And while it might not seem important for her to sign sentences since I clearly understood her when she signed just two words, it makes a huge difference when she can verbalize. Which, we will still continue to work on. Ideally, she will learn to verbalize and sign at the same time, just like us, until signing isn't necessary anymore (down the road a bit, of course).

So, what does this mean to those that see Harlie on a regular basis? Yep, I'm going to ask you to please learn some sign so not only you can communicate with her - but so she can communicate with you. It's a toddler vocabulary, so it's really not difficult. In fact, it is quite fun - especially when you can understand her. So, to all my family and friends, let's talk about this more in person. You won't find a more appreciative person around - I promise! I'm talking about me, of course!

~Christy

Another ear infection.

Harlie went off antibiotics on Friday, the 3rd. By Sunday, I could tell she was getting sick again. So, we took her back to the doctor today. Of course, her pediatrician is ON VACATION! Summer is really proving to be difficult. Well, luckily I have spoken with one of his partners before, so she worked us in and Harlie has another ear infection. So, we're going to try a different antibiotic this time.

While examining Harlie, she seemed to be pretty concerned. She is very wheezy again. Plus, Harlie had a few of her coughing attacks while there. She said she was considering sending us to the hospital. Since this was our first visit with her, I asked her to please call one of her other docs to just make sure the hospital was the way to go. So, she called the pulmonary clinic and we have to go see them tomorrow. I think she just wants to give Harlie the best chance to be healthy as possible for going into surgery next week. Hopefully a couple doses of the new meds will help.

Oh, on a great note, Harlie weighed in today at 15 pounds and 2 ounces! So, we're really happy about that. Well, that's about it for tonight. I'll let you know how tomorrow's appointment goes.

Take care,
Christy