Well, Hello Big Girl!

You know your little girl is becoming a big girl when she asks to sit in a chair while in the hospital.





Yep. There's no other way to tell your kid is growing up. That's it. So to all of you that have spent little to no time in the "joint" with your kid - I don't know how the heck you're going to know. So, good luck!

Ahhh, how different this last hospital stay was. Well, in many more ways than just funny, but that's for another post...

Keeping her entertained was a true challenge. I mean, there's only so much crap, I mean toys, you can pack! Um, especially when you think you're going in for an outpatient procedure.

Needless to say -- I am NOT looking forward to the next hospital stay. But, no one ever does I suppose. Ah, how incredibly strange our lives are...

More later!
~Christy

Baby proofing is impossible with this one.

The other day, Cooper came into the kitchen and I picked him up. He smelled very sweet.

Like syrup sweet.



So, I put him down and followed him into the playroom.





I just hope this was the first time he drank our syrup.

Nothing is safe with that kid around.

~Christy

Updates

I haven't been feeling like my normal self these past few days. I'm tired. And not the kind of tired that you get from getting too little sleep the night before. I'm feeling so "off" that I totally forgot about her hearing appointment this afternoon and I am kicking myself!!! The last time an appointment had to be rescheduled it took two weeks!

Last week Harlie had private speech therapy and feeding therapy and went to school four days (Tuesday through Friday). Getting in her private therapies really complicate my schedule. But I have a hard time saying no to therapies. She needs all she can get.

Feeding Therapy

On Thursday she had her first feeding therapy session since late November. I don't think any of us expected much from her given that the past 9-10 weeks her jaw was wired shut. While she wouldn't let Allison do her mouth exercises - she did surprise us all by swallowing (willingly) about an ounce of thickened apple juice.

If I had been able to blog that night, I would have gone on and on about how great that was and how happy I was about it. And I am. I think. It's just a little complicated.

I'm starting to think that having a medically fragile child is sort of like being on drugs. There are these wonderful "highs" after what I think are huge milestones/achievements. And then after some time, the high goes away, reality sets in, and I crash. I guess that's when I realize that even though she swallowed an ounce, we have oh so incredibly far to go.

Plus, the highs seem to take so much energy. And when the reality of the situation sets in, I'm left feeling spent. And sad. And it probably didn't help that her feeding therapy was exactly one week after she coded. Emotions are weird.

School

School is going great. She is loving it. And her teacher called me on Thursday afternoon just to tell me that she is so pleased with how Harlie is doing. She said that she is transitioning beautifully. She said that everyone loves her. Including a little boy that is a very interested in her. She said that he used to be interested in the other little girl in his class, but now he only has eyes for Harlie. Typical male. Out with the old, in with the new. Boy, it starts young.

She also said that when they opened the door at the end of the day, Harlie "ran" down the hallway towards the bus. Running is a physical goal for Harlie. She more like speed walks than runs. Not really sure why. Probably has something to do with balance and strength. At any rate, giving her a motivation like the bus works for me!

And Brandy said that in the afternoons, when they drop off the last child before Harlie (Harlie is the last stop) she signs "mama" and "home." Awwww! She misses me!

At school, she has a speech therapist (ST) and a hard of hearing (HoH) teacher, in addition to her main teacher. The ST and HoH teacher come in during school hours (11am - 2pm) to work with her. Her HoH teacher started an "Experience Book" for Harlie. It is a book that goes back and forth to school each day. She writes what they worked on that day and what she wants me to work on that night. Then I write what we did that night.

I have to say that I think the book is pure genius.

1) it gives me something specific to focus on with her, which makes my life easier. Often, just finding direction is a major challenge.
2) it will help her learn how to "tell" me about what she did that day (I'm hoping anyway).
3) it will help me learn new signs and keep track of what signs she's learned

Tonight the HoH teacher wanted me to talk about a pig (and there was a pig glued to the page) and some words to associate with a pig - like big, dirty, roll (in the) mud. I did not know the sign for roll, so I looked it up and taught it to her. Ah, a productive night time routine. Gotta love that for multi-tasking!

Her Infection

Tomorrow we go back to Norfolk for her follow-up appointment with her Infectious Disease (ID) doc and her plastic surgeon. Of course one appointment is at 11am and the other is at 4pm. Fabulous. I tried to make them closer together - but ID only sees patients with PICC lines in the am and her plastic surgeon is in surgery all morning long till after 3pm. So, I did the best I could and got the last am appointment and the first pm appointment.

ID will check her "levels" to make sure that the antibiotics are doing the job of killing the infection. As of right now, we are supposed to go back to Norfolk once a week for six weeks. Since that takes all day, I might have them see if they can transfer her ID care to MCV. We'll just have to see what's involved to make that happen (and if there's an ID doc at MCV that will take her on).

I think I will also have them change her dressing while we're there. They have a VAT (vascular access team) that will come and do it for me. Jennifer (her PICU nurse) came and did it for me on Saturday, but that was a nightmare. Tom and I had to hold her down and Jennifer said that Harlie's the biggest fighter she's ever changed a dressing on (I've heard that before from other nurses, too). Which only makes things more dangerous as far as trying to keep the site clean, and trying to keep the line from coming out.

The worst is that changing the dressing shouldn't be that painful. The worst part is taking off the tape. After that's off, there's no pain involved. But, her anxiety is so bad. She gets so worked up and cries the whole time, which is not good for her circulation. So, her hands were blue the entire time we were doing it. I seriously thought she was going to pass out.

Luckily she seems to finally be getting used to the PICC line. At first she wouldn't let you near it. But now she understands that we have to wipe it with alcohol and hook up the meds and she's fine. And she will carry it around with her. I am going to take a picture of the meds so you can see. It's a pretty cool method for infusing meds.

But, for now I have to sign off. After all, it's going to be another busy day tomorrow!

Thanks!
~Christy

Murphy and more of this art

If you read this post, then THIS post will make more sense.

Murphy, my kid who is obsessed with all things Halloween/monsters - brought this home from school yesterday.



Perhaps I should be worried. Does this mean he's going to be a Democrat? hehe Just kidding.

But, for real, when is this going to stop? Everything is a monster!

Well, I have way more to write about (Harlie had speech and feeding therapies this week - plus I want to update you on how she's doing at school) but I can't tonight. This week has been particularly draining and I was already drained before it started! Hopefully next week I will feel more like myself.

Take care,
Christy

First Day of School

Harlie's first day of school was yesterday.

It occurred to me later that I might seem like a mean mom. She was discharged from the hospital at 5pm and was at school the very next day. No break for that girl! And you don't want to know what the rest of the week looks like!

Back to her first day... Somehow it was like she knew what was going to happen. Which is really weird, because she has no idea what "school" is or that you can take a bus to get there. Murphy walks, so it's not like she's seen him do it. But, when the bus got to our house, we told her that the bus was here, and she stopped what she was doing and was very cooperative putting on her coat and walking out the door. And we walked out the front door (which we never do and she went right along).

Here's Brandy carrying her to the bus...



And she wasn't scared getting on the bus. At all! Which I find absolutely astounding. And while the aide (rides with the bus driver) got Harlie in her harness, she cooperated as if she had done it a hundred times. No fear whatsoever, that girl. I just don't get it. After all she's been through, she's still open to new experiences! Amazing.



Here's Harlie, the aide (I think her name is Vonnie) and Brandy.



And here's sweet Harlie, all ready to go.



I told Harlie bye and signed "have fun at school" and she immediately signed "fun" right back to me. And she wasn't just repeating what I said, she was telling me she was already having fun!!! Seriously, how stinkin' sweet is that???

I gave Brandy the camera, and here are some pictures she took during the day.







Of course the IV antibiotics she's on is tearing her up. She's going through a lot of diapers. And she went through the pants she was wearing, and her back up pants and came home in a boy's size 5 pair of sweat pants. Now, that's a first day!

Here comes the bus to bring her home. Nope, we weren't staring out the window waiting for her. Not at all.



And home. After a very productive, fun-filled first day of school. See the cool sweats?



Her teacher sent a note home saying that they sang a song about losing a tooth, since she's the first one to lose one. And that she participated in all activities with NO refusals. Wow! What a turn of events!

That's it. More later!
~Christy

Guess What?!?!?!

We are going home!

We just have to wait for her dose of antibiotics to finish (another 18 minutes) and we are outta here! Woo Hoo!!!!

She is SO ready! I made the mistake of pulling her clothes out and she ripped all the leads off her chest and disconnected her pulse ox within seconds!

She keeps on pointing to her PICC line and signing "off" but that can't come off, obviously. Six more weeks, sweetheart.

Well, we have some packing to do - so I have to go. I'll update more later. Just wanted to share the exciting news. For some reason (gee, I wonder why) taking her home means so much more to me. I am just so, so thankful. Words will never express just how grateful I am to have her. She laughed out loud while watching Cinderella today and I wanted to cry. It was the sweetest sound I've ever heard.

Thank you for all your support!!!
~Christy

The kid is bored!

It is now after 9:30pm on Sunday night and Harlie is going nuts in her bed. She is a total Fruit Loop! She is BEYOND bored and if we don't get out of here tomorrow, I might lose it!

She is literally crawling all around her bed, messing with any equipment that is within her reach. And she pushes the buttons on the bed rails with her toes. I think she's saying "mama" (seriously, I do!) and asking for things to play with. And I'm betting that if I weren't sitting right here, she would get right out of bed. She's nuts I tell you! Although I can't tell you how incredibly awesome it is to hear (I think) her say "mama!!!"

I will seriously go nuts myself if they tell me we can't leave tomorrow. DAYS in the same bed, watching the same movies - what's a girl to do??? We've tried coloring. I got her these cute wind up toys, which she loves, but they only last so long. I've let her watch some videos on my computer. I briefly considered taking her for a walk (although she's still on contact precautions and I don't think they let those patients walk around) but then I remembered that if I put on her clothes, or we start to leave this room, she will think she's going home and it will break her heart when she realizes she's not. So, it's not worth it.

At 6am this morning they woke me up to tell me I had to move to the other side of the room because we were getting a roommate. Ugh. It was a 5 day old baby girl. First time parents. They took her home, she had some issue, and they brought her here for something. They were waiting on blood cultures, too. And you should have heard them talking. They were told that cultures take 24 hours. So, they thought they were leaving the hospital at 4pm today since they took the blood at 4pm yesterday. HA! Newbies.

It was really killing me to hear them recount their days to family members. I know, I know. It's all relative and they are/were scared, it's a big deal to them, I get it. But it just showed me how incredibly seasoned I am at this. And it literally HURT to realize that so profoundly.

And how incredibly different a hospital stay is now. I remember when Harlie was in for those first six weeks. She slept the entire time. Sure, it was busy. There were a lot of docs to talk to, a lot of nurses to talk to, a lot of learning and practicing to do. But, NO entertaining a 3 year old little girl! Let me just tell you - it is a lot of WORK!!!! And I am tired.

And we cut off the lights and the tv, shut the door and the blinds, and then the respiratory therapist comes in for her breathing treatment. And turns on the light, answers her phone, talks for a while (and not with her inside voice) and tries to buddy-up to Harlie.

Look lady, do your business (as quietly as possible, please) and get the heck out of here!

It's now 10pm and my 3 year old is wide awake!

Goodnight!
~Christy

Sunday Update

It's now Sunday. Unfortunately, she was moved from the PICU to the floor (trach pod) yesterday afternoon. While it is more "comfortable" in that we can eat, talk on our phones and get visitors in here, we also get less help, too.

She is doing great. And she is so ready to go home. Yesterday she signed "go home, shoes and get dressed." And she kept pointing to her monitor wires and signing "off." It kills me to tell her we can't go home yet. Especially when she FEELS fine.

All we're waiting on now is culture results. The infectious disease (ID) doc came by just a few minutes ago. He said that she has a "bunch" of organisms/bacteria from the bone infection. To spare you from the lesson in microbiology I received (another area of medicine I'd rather not know about ) when more organisms grow, it takes longer to find out exactly which antibiotic will work.

The good news is that it is not likely to be MRSA. So, that's great. The bad news is that one of them is Pseudomonas, which can be pretty resistant to meds, too. It's pretty common for pseudomonas to live on/around the trach. It really likes damp areas, and getting humidified air during the night makes a trached person more susceptible. The thinking is that it was on or around her trach, which was super close to her incision. And the germ could have gotten on her trach collar, which then rubbed on her incisions. At any rate, it looks like it got into her bone, which makes the germ worse than if it were just isolated to the trach. Once it goes internal, it becomes more serious and harder to kill.

I asked him if this changes the length of time she'll need to receive the IV meds, and he said no. Which I was relieved to hear. Although I know things can change, so I'm not counting on anything, really. But, it does increase the number of meds she'll have to take. I think it will probably end up being two different IV meds plus some meds through her g-tube.

Hopefully we will have the final results sometime in the earlier part of the day tomorrow. Then she will need to get one dose of the appropriate antibiotic, wait a little while to make sure she has no adverse reactions, and then we can leave. So, hopefully we'll be home tomorrow night. Although, if they still can't determine what's going on until too late Monday, it will be Tuesday.

Well, I'm feeling very tired all of a sudden, so I'm going to go. I want to upload some photos, but I'll have to do that later.

Thanks,
Christy

Friday Update

Harlie is doing much better today.

To finish on the things I wasn’t able to write about last night…

When the surgeon went in to remove the wires, he discovered that her right, front top tooth was too loose to leave in there. So, unfortunately, he had to pull it. We are thinking that since her bottom teeth were wired over her top teeth, the bottom ones must have been applying too much pressure on that tooth, causing it to loosen.

Considering what happened yesterday, I know I probably shouldn’t care. But I can’t help it. She’s only three! And it will now be years before her permanent one will replace it. Right now, it is really hard to picture her without her front tooth. Especially since her mouth looks pretty bad at the moment. Everything is very swollen (gums, roof of her mouth and lips) so it’s hard to tell what she’s going to look like. It’s like her top gums have swollen so much that all her top teeth have spread out – if that makes any sense.

But, overall, I think her face/jaw look really good. Already today it appears that the swelling is decreasing. For some reason the left side of her face was more swollen. Maybe there was more trauma to that side when the wires were pulled, I don’t know.

Her surgeon stitched up the incision/wound site. I’m told that is a good sign that there was enough viable tissue there to save (which saves us from having to pack her wound and have it heal from the inside out). Also, I forgot to mention last night that he looked in her mouth and didn’t see any sign of the wound going all the way through. So, we were all very happy to hear that.

During the 9 week wired period, she did some damage to her tongue. Her surgeon is thinking that maybe she cut it on the wires. Yesterday it looked WAY worse and it was very upsetting to me. It was just the straw on the camel’s back, I suppose. Seemed kinda cruel to me that her tongue would get damaged with all the challenges she already has. That would definitely affect her feeding and speech, which just made me mad. Plus it looked really gnarly, making me immediately picture kids making fun of her.

However, today it looks better. And when Dr. Magee (her surgeon) called me today to check on her, I asked him about it. He said that he did see it, and he can fix it. He said in hindsight he probably should have just fixed it right then. But, in all the excitement, he didn’t think about. Although now that I think about it, it’s probably best that he didn’t. For one, why give her another thing to deal with, and two, that could possibly be another source of infection. At any rate, he said that it is an easy fix, for which I am extremely grateful.

Since we are still here today (and will be through the weekend I’m guessing) we had to go to our back up plan. Which was that Brandy would drive my car back to Richmond and leave me here with Harlie (of course). The original plan was that Jennifer would drive down today and pick us up. But, since we had that scare yesterday, Tom cancelled his appointments and drove down this morning. Luckily, my friend Melissa was able to come and sit with me after Brandy left. Then she drove me to her house to spend the night. It was so nice to be able to go to a warm, comfy place after yesterday. I was a little nervous leaving her for the night, but her night nurse was awesome and we had her last time we were here (in fact, she was one of the nurses that was there when Harlie had her breathing episode) and she assured me she was safe and that she would call should anything happen.

While I definitely think she is feeling much better, she is being quite the bear to handle. She has been so protective of herself (aka fighting anyone who looks at her) that they had to give her IV Versed to be able to change her trach this morning! She’s had her trach changed once a week since she was three weeks old. And even when I tried to do it (thinking she would be more comfortable) she still went nuts. And they don’t want her getting that upset right now, so they decided to try the Versed. And it didn’t really work. She is just too tolerant of drugs!!!

Then, shortly before noon, her last IV access blew. That was unfortunate because they were going to give her sedation meds through that IV to put a PICC line in. One needs to be sedated for that procedure. So, they ended up having to give her an IM medication and versed through her g-tube so they could get another IV in, to give her the sedation meds, to be able to put in a PICC line. Whew! Of course, they asked us to leave for all that torture (standard protocol when a patient gets sedated), which is always hard on us (or any parent who knows you can’t help your child when they are in pain). So, Tom and I went to lunch.

After we got back, the infectious disease doc came by. The cultures are growing something, but it’s still too early to tell for sure. The nurse told me earlier that she heard it was looking like MRSA, but he didn’t say one way or the other. However, they have been on contact precautions all day (standard protocol with something like MRSA).

What he did tell me is that she will have to be on IV antibiotics for SIX WEEKS!!!! SIX WEEKS!!! He said bone infections are very difficult to treat and take a long time. We will have to come back once per week to have all her levels checked so they know that the meds are doing their job. Ugh. Now we just have to hope that the PICC line stays put for the six weeks. If it doesn’t, then she’ll have to get another one placed. Normally they take the catheter from the arm all the way to the right atrium of the heart. However, they didn’t do that for her. Because of her funky heart, they could only go to before her subclavian something or other. I’m thinking maybe that makes it not as secure? But I don’t know yet. And I don’t want to think about it. So, please cross your fingers that things will start working out for her.

As far as when she will be able to come home, this is my understanding:

They have to get confirmation on the cultures and she will need to be switched to the applicable IV antibiotics for 24 hours (to watch for any adverse reactions) before discharge. The ID doc said that we should have the cultures back Saturday or Sunday. So, if all goes well, we’ll be able to leave Sunday or Monday.

As you might have guessed, Harlie is a little different. She doesn’t follow any norms – medical or otherwise. And she often does just the opposite of what makes rational sense. It only adds to the challenge of being her parent. To prove my point, here’s a story…

You might remember that we’ve been struggling with potty training since the summer (like July). I believe that she CAN do it, she just doesn’t want to be TOLD to do it. When we knew that she would have to get used to wearing a hearing aid – I threw in the towel on potty training. There are only so many battles I can fight with her.

SO, last night (Thursday night) – around dinner time – they took out her Foley catheter. As of this morning, she STILL had not peed! And, keep in mind that she’s receiving IV fluids. So, her nurse felt her bladder and it was full. Her nurse figured she was potty trained and brought over the portable potty. Do you know that girl sat on the potty and went? Is she something or WHAT?! THEN, a few hours later – she still had a dry diaper. And she signed “potty” AND pointed to the potty! So, her nurse put her on it again – and she went!!!!

She has now gone ALL day with a dry diaper! She’s used the potty all day. And she’s even pooped in the potty – which is a dang miracle. I am just astounded.
So of all weeks – she’s going to pick this one to potty train herself. Thanks, that’s very convenient. I swear, that girl is something. She does things on HER terms. Her nurse said that kids that are in the potty training stage always regress while in the hospital. She has never seen one ADVANCE!

Well, they are about to kick us out of the PICU for shift change. So, we’re going to go eat dinner and come back later to visit with her some more before going to our friend’s house (Matt and Melissa) for the night.

I will update you as I can. Thank you for all your comments of love and support. I can’t tell you how much that support helps me get through these tough times. They are so appreciated!

Love,
Christy

Tough Day

Well, today was a tough day to say the least. So much to report about that I just don't know where to start. And I am way too tired to stay up and write about it all in one post.

So, I'll just start and pick up later, when I can. But first, let me say that Harlie is fine now.

However, about 10 minutes into surgery, Harlie coded and went into cardiac arrest. Maybe that sentence is redundant, but, this is new territory for me. Her blood pressure dropped and dropped and then went to nothing. And they started chest compressions. The cardiac anesthesiologist said that chest compressions are difficult on her physiology (see this post for more info) so he was glad they got her back.

I'll say.

What they are suspecting is that when the surgeon went to debride the wound, it sent toxins/bacteria from the infected area into her blood stream, and into her heart. While a normal, healthy heart could tolerate it, one with her heart complications could not.

They gave her all the drugs you would hear in any medical tv drama (epinephrine and some other ones I can't remember right now). And they got her stable again.

It turns out that part of the bone graft (harvested from her skull) became infected and essentially died. So, he had to remove that portion of the graft. Luckily, it wasn't the entire graft. But, I can't imagine this bodes well for the graft that remains. I'm guessing it won't break any records in good growth. So, that's very unfortunate.

Infectious Disease was called and they are keeping tabs on her. They took bone, blood and tissue cultures to see what bacteria we are dealing with. But until then, she is on two very strong IV antibiotics. Unfortunately, they are so strong that they are very hard on the veins and it looks like she might be getting a PICC line. The good thing is that she can come home with a PICC line, and then our nurses can give her the IV meds and she'll be at home and much happier.

As far as when that will be, we have no idea. I know that they want the cultures to come back so they know they are giving her the right meds to fight that particular bacteria. And cultures take time to grow. So, I'm guessing it will be a couple of days.

The good news is that she is resting "comfortably" in the PICU, with nurses that know her from her previous stay. She is one amazing little girl. Even after a day like today, and a Fentanyl drip (meaning she is sleeping with her eyes closed), she is still swatting at anyone who gets too close. You just gotta love that fighting spirit! And luckily everyone here recognizes that and appreciates it.

Well, I really need to get some sleep now. Wednesday night I couldn't go to sleep so I ended up only getting about 3 hours. And today was a very long, exhausting day. I do have more to tell you, but stay tuned, and I promise I'll give you all the details as I can.

Thank you so much for all your thoughts and prayers.
~Christy

Things not as Planned

Hello,

This is Jennifer one of Harlie's nurses and here is a quick update. Christy does not have access to a computer at this point and her stay in Norfolk will be a little longer than planned. Let's just say there were some setbacks today and Harlie did not have a good day. Harlie is currently stable and in the PICU receiving IV antibiotics. Christy will update as soon as she can with all the details. As you can imagine Christy and Harlie are both exahusted so please pray for them to have a uneventful night and that they both can get some much needed rest. Christy appreciates everyone's concern and will be in touch as soon as possible.


Jennifer

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

Ewwww! Gross!!!

**WARNING**

Gross pictures to follow.

So, over the weekend, Harlie seemed to get ultra sensitive about her face, mouth and jaw area. She kept pulling her trach collar away from her jaw when I put her to bed. But, I didn't think much of it. I just thought she was being weird. What a great mom I am!

And she started really crying when we would try to brush her teeth. You know, we can only brush the outside of her teeth since her jaw is still wired shut. But, normally she would let us in there to brush what we could.

And she started to smell a little worse than normal. Well, her new normal - with her jaw wired shut. Just a weird, funky odor. My poor sweet girl!

Anyway, on Saturday I took some video of her (that will be posted soon I hope) and when I watched the video on my computer I noticed that her incisions looked really red. But, again, I didn't think much of it.

On Sunday morning, I noticed that she had some dry, powdery looking stuff on her incisions. I just thought it was dry secretions, so I got a warm washcloth and tried to clean it off. Well, she pitched a holy fit crying and carrying on. Oh, I'm so terrible that I just gave up and said, "Geez, Harlie. What's your problem!?" And got her dressed and went on about our day.

Finally on Sunday night, I really looked at her incisions and there it was.

Grossness.

They were really bumpy and swollen - like not equally swollen - swollen in different amounts in different areas - creating a bumpy kind of look. And it looked like there was goo in there. Ew! Definitely infected. Ugh!

But she didn't have a fever! And she wasn't acting any different - as long as you weren't messing with her face! So, I knew first thing in the morning it was straight to the doctor.

So, Brandy arrives this morning. While Harlie was still sleeping, I wanted to show Brandy what it looked like. So, I got a flashlight and we went in to have a look. Well, Holy Infection! It burst during the night!!!! Blech!!! There was pus everywhere! And there is this one spot - the spot that took the longest to heal initially - that is like a hole in her jaw. It is so yucky, I just can't do a good job of explaining it.

So, of course, I took a picture.

I figure if I have to see it - then so should you.

But, I must warn you. The following photos are not for the faint of heart. To me, they're pretty gnarly. But, maybe that's because it's my little girl. Maybe looking at photos like this isn't that bad if it's someone else's little girl. I wouldn't know, as I've not ever seen photos like these. Just another perk of being me and living my life I suppose.

So here you go...







Her doctor took some pus for a culture. That was no fun. Harlie was in so much pain! He said we'll hear back in the next few days. Hopefully we'll hear back before Thursday, just in case it has any impact on getting her wires out. He also gave her a shot of Rocephin - which is what he calls "the big guns" as far as an antibiotic that he can give her. Oh boy, after he had to get some pus for the culture (which was super gross, thank God that Brandy traded places with me so she was the one who got to see that up close) and she got the shot (which the nurse said burns pretty bad) Harlie was one unhappy little girl. Oh, I felt so bad for her.

So, after I comforted her (which she is beginning to let me do, thankfully) and she calmed down, we all started to pack up and put on our coats. Then all of a sudden, Harlie started crying again. Like a real sad cry. And I said to Brandy, "What's her problem?"

WOW! What a crummy mommy I am!!! Luckily, I realized it as soon as I said it.

My poor little girl has a gaping, pus seeping hole in her jaw, she smells like an infection and she just got a burning shot in her leg!!! Of COURSE she's crying! Heck, it hurts my stomach just to look at her! Yet here I am, pushing her to get over it and move on the next thing. Ugh. In my defense, that's probably a self-protective instinct coming into play. But that's too deep of a topic for this post.

Anyway, I simply can't imagine what it feels like to be her. What a tough cookie she is!!!

Well, that's all the grossness I have for today. I'm sure you appreciate getting to the end of this post! I'll certainly let you know how she's doing tomorrow!

Take care,
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

Updates

Snow. Snow. And evidently, more snow. Talk about unusual weather for Richmond! And I'm over it. Schools were closed today and are closed again tomorrow. Which means no school for Harlie, as well. Bummer. And we're supposed to get even more snow at the end of the week. Ugh.

Well, I guess this just gives her more time to get used to the increased volume in her hearing aid.

Yesterday (Monday) we went to see Ann about Harlie's hearing aid. It was her first appointment since getting her aid on January 4th. I was so proud to tell her that Harlie is now wearing her hearing aid - with no struggle - all her waking hours! WooHoo! She said she was very surprised. She was hoping for an hour or so at a time. I told her that we gave her a week or so of letting her have large breaks. Then we shortened the breaks for a few days. Then we just put the aid back in every single time we saw it out. And we didn't say anything to her about it, we just put it back in. And that worked. Although she can only be but so cooperative. When the wearing of her aid increased, the wearing of her HMEs (heat and moisture exchanger) decreased.

Here's what one looks like on her... (this picture was taken right before her jaw surgery in December).



So, that's been challenging. When she goes too long without wearing an HME she gets all dry and sticky and that means plugging, which is not a good thing. But we just keep putting one back on and hopefully she'll stop fighting that fight soon.

Anyway, back to her hearing appointment, Ann turned up her hearing aid volume by two decibels. I have no idea how that translates. But I do know that I when I put it up to my ear it sounds loud to me. We go again in two weeks. And I think she will test her at that time, too. I'm anxious to get some sort of measurement for comparison. Then again, the more information I have the more I have to think about.

I haven't mentioned her hives in a while. Just a few days ago, I thought I would see what would happen if I didn't give her the allergy med. Unfortunately, by bedtime, they came back full force. She was definitely itchy and uncomfortable. So, we'll just have to stay on the allergy med for longer. I guess every couple of weeks I'll try again.

So, I'll leave you with a picture of Murphy and Cooper from this morning. I can't get over their hair. Well, I guess I should say their cowlicks. I'm looking forward to summer buzz cuts...



Goodnight!
~Christy