Medical Updates

Hi! It has been a while since I've given a medical update. So, here goes...

Temporomandibular Joint (TMJ) Update

Here's a recap of her TMJ saga:

April 2021 - She had her first custom prosthetic TMJs placed on both the left and the right. This was one of her most brutal surgeries/recoveries. This is the hospitalization when her tablet was stolen from her bed while she slept. And this is the one when she couldn't stop bleeding for weeks. It was a horrible time. Anyway...

May 2021 - a growth appeared at her incision sites on both sides. I took her to several doctors to try and find out what it was.  

August 2021 - I finally got her into the OR with her ENT in DC. He said it was an abscess/infection. They gave her a PICC line and a two-week course of IV antibiotics.

September 2021 - the abscess returned, so infectious disease put her on Doxycycline. Over the next year, we attempted to take her off Doxy several times, each time the infection returned, so she went back on Doxy. 

November 2022 - the infection returned on the right side only, despite being on Doxy. After consultation with several of her doctors, the decision was made to return to Boston to remove the TMJ.

April 2023 - the right TMJ was removed since that is the side where the infection re-appeared. The surgeon said the right side had a track and we never would've beat it with antibiotics. He put a medicated temporary spacer in it's place. While she recovered from this surgery, they made a new custom prosthetic TMJ for her. 

October 2023 - the new custom right TMJ was placed, and the left TMJ was repaired since he found it to be dislocated. This was very unfortunate, because it meant that he had to go into the left side, which opens up the possibility of post operative infections.

December 2023 - We were finally able to stop the Doxy! Yay! This was great, because by November, it became difficult to get her Doxy at all. For some reason, there was a low supply, and I would have to go to several different locations to get what she needed. So, when we were finally able to STOP giving her Doxy, we were THRILLED. It was a little scary at first. But, her surgeon said he felt really good about how the surgery went and he didn't have to go into her mouth this time, so the whole site was cleaner, in general. 

January 2024 - The infection reappeared on the left side (not the right). The left side is the one that has the original TMJ and was dislocated. When I was ready, I contacted our infectious disease doc and she put her back on Doxy. 

December 2024 - On Christmas morning, I discovered that the infection reappeared - even though she has been on Doxy consistently since January 2024. 

January 2025 - I contacted her infectious disease doctor. She put her on Linezolid for 12 days and after that course, we went back on Doxy. The infection looks unchanged since December. So, I had to reach out to her surgeon at Boston Children's Hospital. I explained to both doctors that we are scheduled to go to Hawaii for her Make-A-Wish trip in March. There is no way we have time for her to have surgery before then. So, can it wait till after the trip? They both felt that it would be okay to wait since she will remain on Doxy. 

Trying to find a "convenient" time for this surgery was a challenge. Tom will miss a week of work in March. Then he starts a big job as soon as he gets back. This meant he didn't want to be away in April. We Heart Harlie & Friends has a major fundraiser April 26, so I didn't want to be away during that. She also has summer camp in June. So, she needs to have the surgery before and have enough time to recover from that before camp. I hate for her to miss school - especially if it is the end of the year. But, we really had no choice. 

May 13, 2025 - She is scheduled to have her original custom prosthetic TMJ removed and he will place a medicated temporary spacer. They will then make a new TMJ for her and we will have to return to Boston (hopefully before it gets cold up there) to have the new one put in. We will have to talk about what he can do to try and prevent the right side from becoming dislocated during this process. I fear that we will be doing this forever if we can't prevent a new infection from brewing on either side. 

I have to admit that I am NOT looking forward to returning to Boston again. I just don't know how many more trips and surgeries we can handle. This is not something I would ever choose for her at this point. It is out of my control. We cannot leave an infection in her jaw. But, I am so DONE. I say that, but I know I can't be done. I have to make her go again - and then again in the summer/fall. 

Harlie's Left Eye

One of Harlie's original birth defects was that her left eyelid didn't form correctly. When she was born, she actually couldn't close her left eye on her own. After a few months, she was able to gain some closure. But, it has never fully closed. This leaves her eye vulnerable to dust and particles, etc. When she was in the hospital all those months in 2017 and 2018 (two medical induced comas - one lasting 7 days the other lasting 22 days) they had a hard time figuring out a way to protect that left eye. They tried taping her eyes shut, putting masks over her eyes, sometimes both at the same time. But, her corneas still ended up with scarring. She sees an ophthalmologist yearly. 

Well, this past fall her ophthalmologist said that her scarring has gotten worse and that she was surprised she could see as well as she could out of that left eye. She explained to Harlie that she must put eye gel in her eye before she falls asleep every single night. Surprisingly, she listened to her doctor and has been really good about it - even though she hates it. However, her doctor said she thinks it is time to talk to a surgeon to see if something can be done to her eyelid to help with closure, which would hopefully stop/prevent more damage to her cornea. 

So, when we scheduled her TMJ surgery in Boston, it occurred to me that it might be good to get a consultation from a surgeon there, who likely sees more kids with these kinds of defects. So, I asked her plastic surgeon about it. They told me that she would need to see an oculoplastic surgeon. So, I called that office and asked if we could schedule a consultation. Not surprisingly, this has proven to be a difficult ask. 

I was thinking they could come and take a look at her while we are there for pre-op/surgery the week of May 12th. Then, IF they felt that they could help her situation, they could schedule surgery at the same time she is getting her "final" TMJ placed in the summer/fall of 2025. 

Of course they asked that her records and notes from her eye doc here be sent there for review. The office in Boston told me that they are scheduling appointments for November 2025 at this point. But, he is going to talk to the team since we are traveling and ultimately, I'm trying to minimize the number of surgeries she has to have. After a few days, I received another phone call and he told me that there are three oculoplastic surgeons. But, only one of them can (?) operate on patients who are 18 (the other two are pediatric only) and that it looks like she (or all of them?) is away at a conference that week. He asked if we could come another time. I told him that it is extremely difficult and costly for us to go there and if I can't combine visits, I just can't make it work. I'm sorry, I just can't. That would be a THIRD trip to Boston in one year (when I want to go zero times) and I am only human and I'm sorry that is just TOO much! 

I cannot travel with Harlie alone - I need Tom. And Tom is missing work in March, then again in May, then again in June (to take her to camp) then again to take/pick up Cooper from camp in Maine (he was selected to be a counselor in training at camp this summer!), then again for her 2nd stage surgery. Also, keep in mind that I don't even know that they can help her and I don't even know if insurance would approve it, etc. All of that is really an impossible schedule. 

He said he understood and he actually sounded pretty sympathetic. So, he said he was going to talk to the team and get back to me. Honestly, I don't know what he can do. Sounds like a pipe dream that isn't going to happen. Well, you can't say I didn't try. 

Guardianship

So, now that Harlie is 18 and she isn't a typical 18 year old, I have to think about a guardianship. This has been difficult for me because most of the time when you hear about a guardianship, it refers to an "incapacitated" adult. Even though Harlie is delayed and has a heck of a complicated medical life, she is not incapacitated. However, according to her recent school tests, evaluations and IEP, she is very delayed (she's basically on a 2nd grade level and she is in the 11th grade). I'm thinking that an adult who is operating on a 2nd grade level could benefit from some protection financially and she definitely needs help navigating her medical complexities and decisions. 

But, as usual, nothing is simple. I've now been working on this for months and I feel like I've made no progress. Medically, we don't have a diagnosis that explains that she is delayed - or why she is delayed. She has no diagnosis of a learning disability or anything neurological. All of her IEP and school stuff talks about what a hard worker she is, how much she wants to learn, etc. So, we need to get a psychological evaluation to show her cognitive ability/IQ and adaptive skills. I'll spare you the agonizing steps I've taken to come to the learning that most facilities who do this testing in our area are not approved by Medicaid (which is what Harlie has because of her medical qualifications). So, I asked if I could just pay for it privately. The answer is no - because legally, they aren't allowed to bill patients who have Medicaid. So, we can't get what we need? WTH? 

So, that's where we stand. My attorney said that we can start the process with what we have and see what happens.  So, I guess that's what we'll do.  There are times when my life seems unreal and ridiculously overwhelming. I mean, one of these issues would be a lot to deal with. And these are just the ones I'm talking about in this post! 

Cardiology

Harlie had her annual cardiology appointment on Tuesday, February 11. She had an echocardiogram (an ultrasound of her heart). I think that took over an hour, but it felt like forever. 

It was actually interesting because the person doing it was training so I got to hear what they were saying about the echo while it was happening. I gained a new respect for the skill they have to have to get good pictures and videos of a heart - especially when there are challenges like tons of scar tissue and an unusual heart anatomy. However, even though I knew that, after a while I started to get a little concerned that maybe some issue has developed since her last echo and that was causing it to be even more difficult. 

It made me remember when I was pregnant with Harlie and we were sent to Children's National for a fetal echo. We did not have any idea that her heart was wacky at the time and the echo took forever.  In fact, the room is dark when they do it and there is always a hum in a hospital and I actually fell asleep for a few minutes during the exam! Then the tech stood up and said, "huh, the baby isn't letting me see all four chambers of the heart, I'm going to go get the doctor" (or something like that) and then the doctor came in and did the echo for a while then he asked us to go wait in a conference room where there was a box of tissues on the table. 😑 Just in case you don't know, Harlie's heart didn't have four chambers.

Anyway, back to present day, finally they were done her echo and we returned to the regular exam room. When her cardiologist came in a few minutes later, he said, "Her echo looks great." Haha! Ah, the emotional roller coasters I ride when no one else knows I'm riding them. 

Then he said something about since she's 18 now, it is probably a good idea to start thinking about getting a heart cath done to take a look at things. Honestly I don't know how I could work in a heart cath in our schedule right now. It is hard to remember exactly what is said in some of her appointments. Especially after I ride a roller coaster in my brain. But, he said something about her liver and monitoring that and I swear I was like, "Oh yea, I forgot about that issue!" For a little while after the appointment, I reflected on how I could forget such a thing. I mean, it was something that REALLY worried me last year, for quite a while. We've had numerous appointments regarding that issue in the past year. But, honestly, it is survival. I have to compartmentalize and there are only so many tabs I can have open in my brain. Sometimes I just have to say, "that isn't today's problem." 

Anyway, since I had him in front of me, I asked him about my guardianship challenge. I wanted to know what the worst case scenario was if I cannot get it, medically speaking. He said medically, he doesn't think I'm going to have a problem not having a guardianship for her. He said he will write up something for me that explains that there are several factors (just within the cardiology aspect) that contribute to her developmental delay. Like prolonged oxygen deprivation (she has had low oxygen saturations her entire life), cardiac arrests, surgeries, etc. all contribute to brain development issues. 

While it would be kind of nice to get some answers (not that I ever really expect any) as to why she is the way she is or exactly where is she IQ wise or cognitively, he thinks I could put this on the back burner as we have more pressing issues (obviously). I do love when a doctor can stand back and look at the whole picture of Harlie, versus just zeroing in on their specialty. I really love this cardiologist and trust him and I'm grateful to have him in our corner.

So, we'll just see what happens. I've reached out to another contact about the psych eval and maybe one day I'll get it worked out. For now, this is where I'll end this post. I wonder if y'all get as exhausted reading some of my posts as I get writing them. I swear, sometimes I still can't believe this is our life and that we've been living it for over 18 years. 

Thank you for reading and for your continued support! We couldn't survive without it!

Much love,

Christy xo

Here's a pic of our snowy view from the 4th floor of the Children's Pavilion downtown.

Post-Op Day 1 (TMJ Replacement)

Hi. Well, as I said yesterday, we finally got in to see Harlie at 7:35pm in the CICU. She was miserable. No matter how many times we have been through this, it never gets easier. In fact, I would argue that it actually gets more difficult. I've said before, that every time we come back to the hospital, I'm bringing all the other stays with me. 

If you know Harlie personally, then you know that she is not an affectionate person. She is definitely NOT a hugger. But, post-op, she wanted to hug. She was complaining of a lot of pain. So, her nurse gave her Dilaudid and that seemed to calm her down. By this time, it was well after 8pm and Tom and I had not eaten dinner. 

While we were waiting to see her (very irritated) Tom and I were talking about how hard this is on parents. 

1. We traveled here - so we are starting off a hospital stay tired from the stress of traveling for medical care. I haven't even been able to tell you that last week we had to say goodbye to Tom's step dad, my father in law, and the children's grandfather (PapPap), Cal Bowser. He was a great man and we will all miss him very much. We went to his service in PA on Thursday and Friday. While we loved being able to see Tom's mom and sisters and family (and meet a lot of their friends), it was definitely a very sad, emotional few days. We drove home on Saturday. On Sunday we unpacked, did laundry and then re-packed for our early flight Monday. 

2. You can't eat when you get hungry. All meals are eaten when time allows you to do so. On surgery day, they took her back around 10:30am, almost two hours later than expected. By that time, the cafeteria is closed for breakfast and preparing for lunch. So, we found a snack in a fast food kinda place downstairs. This is where we sat for two hours (through dinner time) waiting to go in to see her.

3. You spend all day sitting in rooms with other people in chairs that aren't comfortable. Or in our case, walking around. If you know Tom personally, then you know that sitting around waiting isn't a skill of his. I convinced him to walk to the local Athleta store (3 miles away) since I had some credit there. I bought a pair of pants that are comfortable, but look nicer than tights. I'm choosing to be excited about my new find. Haha! We were pretty tired and didn't want to risk having to take too long to walk back and miss the surgeon. So, we took an Uber back. 

4. Worrying - being concerned about your child's well being takes a lot of energy. 

Add all of those things up together and you can't help but be exhausted, hungry and grouchy. All of this happens BEFORE the recovery even starts! 

Walking into the hospital this morning, I just felt sick. Doing all of this again, over and over (without ideal results) is like the worst groundhog day ever. I said to Tom, "I don't want to do this to her again. I'm done with jaw surgeries". Tom said, "Well, in our defense, we didn't want to do this one." Truth. Haha! 

She is okay today - she is definitely hurting. 

They are giving her Dexa something, an anti swelling medication. I don't remember them giving that to her last time. I'm hoping that is the ticket to way less swelling than she's had in the past. 

The anesthesiologist who had her yesterday came by to check on her. He told us that she signed something when she woke up in the OR. None of them knew sign, so they got out their phones and started googling. They learned that she was signing "hurt". So, they gave her more pain medicine. I love when she can communicate her needs and I love it when people try to understand her, even when it takes more effort. He also said that they were able to understand that she asked if the doctor fixed her left ear lobe. They told her yes. Cute. Its the little things. Of course after it heals, we will have to pierce that lobe again.  

She got moved to the step down unit today. This step down unit is pretty impressive so far. They are being really good about managing her pain. I was so tired today that Tom made me take a nap. I fought it for a second, but when he put the couch into a bed, went and got me a pillow and sheets, I had no choice. Haha! 

While the nap was good and very much needed - it is not the solution to my kind of tired. I am struggling this time around. I hate to say it (because I am so afraid I will be punished by some greater power) but I am so tired of being inside a hospital. I am tired of having the same conversations with doctors and nurses. I'm tired of watching Harlie go through too much crap. When she is miserable, I am miserable. When she hurts, I hurt. She breaks my heart. She's already asked me when she can eat. What she means is when can she chew up food and eat it like most people do. Somehow she thinks this surgery was to advance her abilities. But, it wasn't that kind of surgery. The reality is that I don't think she will ever be able to chew food up and eat it. Her teeth don't come together like that. I wish that wasn't a goal of hers. I wish that she would come to the conclusion that she can have a fine, happy, good life without eating food like most people do. It breaks my heart, and that makes me so incredibly tired. 

I spoke with the infectious disease doctor today. She is adding a short term antibiotic to be on the safe side. We are going to leave her on the doxy for another 4-6 weeks, also to be on the safe side. She said that this infection is so rare that there is no protocol for it - we are just making it up. She said she found a few articles. Isn't that crazy? I don't even know what it's called. A shitty deal, that's what it should be called. Anyway, I pray that this infection is gone for good. 

Well, I'm signing off for today. It is 8:30pm and we still have to walk back to the hotel. 

Thanks for all the love. 

Christy xo

Plastic Surgery Appointment

Tuesday proved to be a crazy day.  I need to back up slightly first.

Sometime in the last few days Murphy stepped on a lego (a constant hazard around here) and cut the bottom of his foot.  Tom washed it and put a bandaid on it, and I forgot all about it.  Until Monday night, when Murphy started complaining about it (or Tom saw some drainage on his sock, or something.  I know, ewwww, right?)  So, we took a look and said, "Hello, Infection!"  There was pus (such a yucky word), his foot was swollen and there was a red line creeping up his foot starting at the site.  Ugh.  Of course, he didn't have school on Monday and I took them to the mall to play - but did he say anything then - like when the doctor's office was open?  No.

So we are supposed to leave the house at 9am the next morning, and I have no idea when we'll be back.  I didn't think he could go another whole day without antibiotics.  So, as soon as the office opened (8:30) Tuesday morning, I called his doc's office and they said to bring him in asap and they would take him and get him back out the door to try to help accommodate our schedule.  They are so awesome.

Tom left and went to get Murphy from school while I stayed home to feed Harlie and pack the car.  Despite our major efforts, by the time we put gas in the car and dropped the prescription off at the pharmacy, it was 9:30 by the time we were on the road.

More than an hour later (we were in Newport News by then) I switched out a movie for Harlie.  And in doing so, I noticed that the floor looked pretty bare.  Then I asked, "Where's Harlie's suction machine?"

Holy Crap.

WE LEFT HARLIE'S SUCTION MACHINE AT HOME!!!!

As the magnitude of this error sunk in, Tom started being funny (our go-to plan for very stressful times). And then I laughed and cried at the same time.  Oh, so many emotions!  We thought about our last thoughts as we were leaving the house.  Tom said, "Don't forget your Diet Coke!"  Thank God we remembered that!  Whew!

And then I remembered plugging it in to charge because somehow we forgot to do that the night before. So, I plugged it in until it was time to go.  While I was loading the car I thought about putting it in the car then, but then thought, "no, what if we need it before we get in the car?"  I didn't want it to be in the driveway while I was in the house because that was too far.

That freaking suction machine has been at Harlie's side every minute of her life (practically) since the day she first left the hospital.

What if she had a plug?  Well, she's certainly had them - but they've not been emergent so far.  But I know our luck.  The day we don't have the suction machine IS the day we're going to need it.  Like really need it.  And since it helps keep her airway open - the thought that I don't have it around is not a good one.

We were WAY too far to turn around.  And she has a much stronger cough now.  And we didn't have a choice.  We were just going to have to be without it and hope for the best.  I thought if I make it to old age, it'll be a miracle.

So, we get to the hospital and see an ENT first.  He said that Harlie's ear is full of fluid, her eardrum is retracted (meaning pressure!) and of course, it's all scarred (nothing new there).  Dang it!  But, it's not infected.  Of course she just had her last dose of antibiotics the night before.  So, who knows what will happen now.  So, to her - it sounds like she's underwater.  Which would explain why we haven't seen an improvement since the blood clot came out a few weeks ago.  Which reminds me, I don't think I ever told you about that.  Ugh.

Okay - real quick... you might remember in this post I talked about how the pediatrician looked in Harlie's ear and then it started bleeding?  It bled off and on for several days.  Then a few days later she started pointing to her ear and signing "broken" which she does when the hearing aid battery has died.  But, the aid was working fine.  So, clearly something was amiss.   I called her local ENT and they worked us in.  The doc pulled out a HUGE blood clot that was blocking over 80% of her canal.  No wonder she couldn't hear!  And that's been in there everyday since before school started!

We thought for sure we'd see a turnaround in her listening and participation at school.  But, after a few days, it seemed to get even worse!  So, the fluid that's in there now would explain that.  The ENT that we just saw yesterday said that if it doesn't clear up in two weeks, we should get her another tube.  Ugh. It looks like I should really look into a bone anchored hearing aid (BAHA) for her.  At least that would give us some back up that wouldn't be affected by fluid or blood, or whatever.

After we saw the ENT, her plastic surgeon came in.  We spent more time with him yesterday than we ever have.  He looked at her CT scan.  I need to figure out how to get a photo of some of the images so I can show you.  Her jaw is crazy.  Unfortunately, my Mac computer won't read the disc.  I'll see if Tom can work on it for me.

Anyway, he talked about what he needed to do.  Her ramus is in a horizontal position instead of vertical, like in this picture:

And she's missing the condyle on her right.  And I think there's something wrong with the coronoid process, but don't quote me on that.

It's really hard to picture the ramus in a horizontal position.  But, her jaw looks nothing like that picture.  She has no angle at all, really.  But he said he could add one in when she's older.  Oh goody, more surgeries!  And her bottom teeth are way off from her top teeth.  Although you don't need a CT scan to see that!  And clearly, the two sides of her jaw are completely different.  Her last reconstruction was done in December 2009.  The bone graft on the left side took just fine.  But the one on the right got infected and had to be removed.  This left her jaw even more asymmetrical than before.

Basically, he's going to have to cut up her jaw into several pieces and then put them back together again in a better way.  If you've ever had any kind of dental work done at all - I'm sure you can only imagine the pain when recovering from this kind of surgery.  It is truly horrifying.

The good news is that he thinks she has more bone to work with this time around.  I guess the bone has gotten thicker as she's gotten older.  So, hopefully that will help a lot.  And he feels confident he can make the changes necessary for this surgery to be successful.  But, we've thought that each time and here we are.

The bad news is that plastic surgeons (especially reconstructive for anatomy defects) are like artists.  Each patient is completely different.  The results vary widely and cannot always be predicted.  And since her structure is abnormal to begin with, it makes it almost impossible to know what to expect.  All these are my words by the way - not his.  It's just my take on it after all these years.

And he said that with Goldenhar Syndrome, not only is the bony structure affected - but so is the soft tissue.  And if the soft tissue won't stretch or accommodate the changes made to the bony structure, then the results might not be favorable.  The soft tissue can actually force the bone to retract or move by the constant pressure.  Which is why it takes a year to know if the surgery was successful.  The agony!

He said that he could do the surgery whenever we are comfortable.

After talking it through, we decided that we would shoot for May, 2012.  Since her jaw has to be wired shut for 9 weeks, if we waited till after school let out for the summer, we would run a huge risk of her not being able to start school again in the fall.  Since she's had 2 out of 3 bone grafts get infected and require additional hospital time, we would rather be safe than sorry.  And Tom was thinking that it would be better for her to miss the last month of her first time through kindergarten, than miss her first month of real kindergarten.

So, if we are lucky, and all goes the way we want it to, we would be hoping for decannulation (getting the trach out) sometime in the summer of 2013.  So, she would be 7 and starting the first grade (assuming she does kindergarten twice, and is able to progress to first grade).

It's really overwhelming to think she'll be almost 7 and still be trached.  I had no idea it would be like this.  And what if this surgery isn't successful?  I can't even think about it.

Which brings me to my struggle with this whole mess.  I was thinking that we should get some other opinions.  I just thought that we owe it to Harlie and to ourselves to make sure that we are making the best decision on this.  So, I spoke with her ENT in DC about it several months ago.  He gave me the name of a surgeon in Jacksonville, Florida.  I e-mailed him today.  And he replied, and in his reply he "strongly recommended" that I reach out to another surgeon in Miami.

And his recommendation got me thinking that I could probably reach out to a dozen plastic surgeons and that I would still be in the same situation.  How will I know who's the right one?  So, thinking things through....

1.  If I went to a different surgeon, they would be going into her jaw with no prior experience as to what worked or didn't work in the two previous surgeries.

2.  I do believe that no matter who performs the surgery - the same issues are present (the question about the soft tissue, bone grafts, results, etc.).

3.  I have to have a facility that has a cardiac anesthesiologist and can support her cardiac issues (or at least get her to DC if needed).

4.  If we travel far away for surgery (like Miami or Boston) how do we do the follow up appointments?  And what if she gets another infection like before?  What if time is of the essence???

5.  I've already seen two other plastic surgeons (in addition to her current one) and neither of them were candidates to perform surgery, in my opinion.  Both of them only perform jaw distraction - not jaw reconstruction.  Her current surgeon does both procedures.  And it is very clear from her CT scan that jaw distraction is NOT an option for her.  Period.  Her jaw needs WAY more than just lengthening.  It needs full reconstruction.  That's just the way it is.  And both of those surgeons were trying to tell me that distraction can be done in almost every case.  Whatever.  I just don't believe that.  And to be fair, they had not seen her CT scan when they said that.  But, the fact that they would say that without seeing her CT scan is concerning, if you ask me.

6.  I am very comfortable with this surgeon.  I think he's a great person, as well as a surgeon.  But, there is a part of me that says we have ONE more shot to get this right.  It HAS to work this time.  But are more opinions going to help or confuse?  I don't know.  But I do know that the thought of something going wrong and having to travel great distances to see her surgeon is VERY SCARY (considering how awful our last experience was, which lead to this).

If this surgery is successful, our lives will change dramatically.  Without the trach, Harlie could learn to speak at a much faster pace.  Her voice would be stronger.  And she would be able to make sound with a lot less effort - which would greatly speed up the process.

Eating could be a lot easier.  I have to say that after seeing her CT scan - I have to wonder how much the alignment of her teeth affects her ability/desire to eat by mouth.  Her bottom teeth fall to the right and are no where near lining up with her top teeth.  So, as I sit here and make my jaw go to the right and then try to swallow, it's damn near impossible!  Try it.  I don't know how in the world she does it!!!  And now I feel like a total horrible mother for making her!

And forget chewing!!!  When is she going to be able to learn to chew???  I really don't see how chewing is going to be an option at all - until her teeth line up somewhat.  And the thought of going more and more years with no chewing makes me want to barf.  Can you imagine the impact of that socially?  Not to mention YEARS and YEARS of more pureeing food for her!!!  Oh brother.  I have to stop thinking about that.  For real.

So, I guess you could say I have a lot on my mind.  As much as I want this surgery to happen, I dread it. The thought of her waking up afterwards and looking me with that look.  The look that says, "What did you let them do to me???"  I just have to hope that the next seven months will provide some growth in maturity and focus to allow us to try to talk to her about it so she'll know what's happening.  Or at least know more than she usually does before a surgery.

It makes my heart hurt to know what lies ahead of her.  Until then, we'll laugh as much as possible.

Oh, and just in case you were wondering, we did just fine without the suction machine.  We didn't need to use it once.  And what a difference it's absence made to our load when walking around the hospital!  And all those times I take it into the grocery store, or Target or wherever?  Maybe we can lighten our load a wee bit?  I think if it's in the car and we can get to it quickly if needed, it would be fine to not carry it all the time.

Well, that's it.  It's super late and this post is super long.  As always, thanks for reading!
~Christy

9 pm Update

Jennifer came up to visit today.  She went by my house and picked up a bunch of stuff that Tom packed for me.  You know I have to move in.  So now I have my computer.  YAY!  Now I can write MORE!  And upload pictures!  No groans please!  

So, nothing new really to report on.  Just that Harlie has not gotten any pain meds since last night - which completely floors me.  The meds are available to her - she just hasn't indicated in any way that she's in pain.  She's taken a few good naps and she's watched a couple of movies.  

Nothing has really changed since my last post.  Except that ID came by and said that they believe the infection was caught before it went into her bone or hardware.  So, that means a shorter antibiotic course.  YAY!  As long as she's here she will receive IV antibiotics.  And depending on what the culture grows, they might be able to switch her over to an oral antibiotic, which means she wouldn't come home with a PICC line.  

However, it has come to my attention that you can, in fact, go home with a wound vac.  

Oh, Lord.  

I'd rather have the PICC line.  I'm crossing my fingers that it doesn't come to that.  But we won't know anything for a few days.  It all depends on how Thursday's procedure goes.  

So, without further ado, here are the pictures.  They are not in order because I think the first picture is what you see on Facebook, and the first picture is the gnarly one.  And I didn't want it to do that.  Please know that there is a gross picture coming.  

Here she is getting the last few look overs by some of the OR team.  When we got to this room, she cried.  So sad that she knows that room so well.

This was in the casting room earlier in the night.  It was taken right after they found the infection.  Since they had to completely split the cast in the back, they had to wrap new casting material around her waist to keep the cast secure until they got her in the OR.

Watching a movie on the iPad, trying to escape reality.

This was just a few minutes before they took her to the OR.  Another case of not actually being happy, but trying to look it anyway.  Even Harlie's trying to muster up a grin.

And here is the wound.  Holy Infection, Dr. Blakemore!

I was holding Harlie across my lap (tummy down) and Heather was sitting next me helping support Harlie's head.  When they pulled back the cast and we all saw her incision I leaned my head into Heather's shoulder and Heather said, "I don't know who to comfort!  You or Harlie!"  I said, "Me, of course!  I'm your friend!"  Then she said, "Okay I have to go to the liquor store.  I'll be right back."  You know, you just gotta love funny people.  Who know you so well.

I feel terrible laughing when Harlie's in so much pain.  Not because she's in pain you understand.  I have to find the humor in a situation.  It's just the way I handle stress and pain.  But I think by this point, we had taken out her hearing aid since the cast saw is so loud.  So maybe that muffled the sound of her mother's laughter when she was writhing in pain.  Oh, my sweet, sweet girl.

This is her wound with the wound vac in it.  I think it's a sponge that is in the open incision that has a light suction to do... something to make it heal better and faster.  Or something like that.  It's really not something I want to know much about.  But I'm pretty sure that now that I've said that we'll be going home with one and I'll have to anyway.

Here's the new cast.  It has a hole in the front for her g-tube and a hole in the back for the wound vac.  It does not go around her leg.  So she can bend at the waist.  As of right now it is very close to her trach and it is making access quite difficult with the trach collar.  If they wanted to send her home in this cast I would not agree.  But, they are changing it on Thursday, so we'll get by for now.

Here she is napping late this afternoon.  In fact, she was sleeping so hard that her nurse was able to change her IV dressing without waking her up!  Jennifer told her that she just got herself a new job - home healthcare for Harlie!

Earlier today she asked for water.  So, she drank a little bit.  She also drank a little over an ounce of Pediasure.  But, I've been told that good nutrition is so important for a wound like this to heal - so I am not pushing her to stay strictly on oral feeds.  So, we are going to tube her two cans over night tonight.  I will try to give her some Pediasure by mouth tomorrow - but I'm sure we are going to have to tube her most of her nutrition while in the hospital.  And that's okay because I know she will bounce back to her norm when we get her home.

It has taken me a long time to write this post (so many interruptions!) so it is now 9:30 pm and when we changed her diaper tonight, she clearly indicated that she was in pain.  So, I asked the nurse to give her some pain meds.  They are trying Nubain instead of Morphine.  Morphine makes her so itchy.

Tomorrow my mom and sister are coming to visit.  So far, this stay is going great!  I love having visitors!  And we got lucky this stay.  The CICU is full, so we are in an overflow room, which is an HKU (heart and kidney unit) room (the floor) but it is being used as a CICU.  So, we get a bigger, more comfy room with a couch, private bath and shower, and you can eat in here!  And we still get CICU nursing!  Isn't that great?  It's the best of both worlds!

So, that's it for now.  I will write more tomorrow.  Thank you for all your support!!!
~Christy

In Emergency Surgery

Very quick update... After talking with a few folks I decided to take her to the ER in DC. I didn't want to come alone (heavy traffic + trach + laying down child = a stressful drive) so I asked my friend Heather if she could possibly leave work and go with us. So she rescheduled a bunch of stuff and took the rest of the day off for me! I am so thankful for my support network!

We got to the ER around 3:30pm and we saw a buch of docs. An Ortho resident came to cut the back of her cast and a very long story short - she has a horrible infection at the top of the surgical site. I took a picture but I can't upload it right now. her surgeon came down and was shocked when she saw it.

So that meant she had to go into surgery ASAP. Luckily Brandy fed her lunch at noon and I didn't tube feed her after - so she was good as far as that went.

She cried when we entered the parking garage and she cried when all the scrubs showed up. She kept signing car. It was heartbreaking. Truly. What she has to endure kills me.

They took her back at 8:45pm and said it would be three hours. I will update more later as I can. It is very busy though - constant interruptions and millions of questions to answer. Going into unplanned surgery at night when the hospital is deserted is unsettling. heather is going to stay with me until we know she is okay. Thank you Heather!

Thanks!
christy

Heather and I haven't eaten

Weekend in review

Tom took Murphy camping with the cub scouts on Friday.  That left just me, Harlie and Cooper for the rest of the weekend.  I had our night nurse on Friday night, which allowed me to go to an exercise class on Saturday morning.  And it was HARD!  Oh boy am I sore!

A few hours later Harlie signed that she was itchy.  So, I took those long q-tips that you see at doctor's offices and put it down her cast like I normally do.  But when I pulled it out it was wet.  Like yucky wet.  I got a new one and fished around a bit, and pulled out some pink-tinged pus.  Oh, great.  That is not a good sign!

So, I called the ortho surgeon on call at the hospital (in DC).  I have to share some of our conversation... I gave him the quickest, most concise history I could to bring him up to speed.  When it was his turn to speak, he said, "First, I have to ask you, you're very medically knowledgeable, are you a physician?"  HA! I said, "No, I just went to the school of hard knocks.  I've been really busy the past five years."  chuckle, chuckle.

Anyway, he said that the drainage could be from skin irritation (of the severe kind, if you ask me!) or from an infection in the surgical site.  If it was skin irritation, they could try to modify the cast again and give antibiotics.  If it was an infection, she'd have to go back into the OR for them to clean the site.  You don't want an infection in your spine!  And he said that they might need to cut a window in the back of her cast to see the site to tell the difference.

And if it was a skin irritation, it could wait till after the weekend.  If it was an infection, she could get very sick, very fast.  So, we couldn't wait to see the doc during the week.

He said that there was no way he could tell me how serious it was over the phone.  Which left a decision - go to our local ER and have their ortho surgeon on call take a look at her, or drive her up to DC's ER where he would see her.  

Considering Tom was out of town and going to DC would be quite the commitment and I would have no idea how long I would be gone, I chose to go to our local ER.  Some negatives with doing that:

No surgeon wants to mess with another surgeon's patient.  Especially post-op.  

No ortho doc wants to mess with another doc's cast.  

So, some doc came down and looked at her.  It's his opinion that it is a pressure sore, and not an infection in the surgical site.  And here's why:

She's lost weight.  You can really see it now - she's super skinny.  And he said that the swelling is down, she's lost weight and she's moving and wiggling around in the cast.  Plus, her cast is really breaking down in some areas.  It was his opinion that she needs a new cast.  Three more weeks is a long time when you've already got skin breakdown.  And she is definitely in pain.  

He called the doc in DC and they spoke and agreed to send us home with the plan that we would be seen by her surgeon on Wednesday (she's out of town till then, as luck would have it - ugh).  We thought about getting a white blood count, but he was pretty confident and didn't want to put her through the torture of a blood stick.   

He told me what to look for in the meantime:

A fever

Loss of appetite/food tolerance

Reduction in activity/lethargic behavior

Overall sickness/not being herself

Now that we're back home and it's Sunday, I'm feeling a little less panicky and worried.  But, I left feeling a little annoyed.  I know that what he says is true.  For most kids.  But in our case, we have experienced a major infection with none of those signs.  So, I'm not very comforted with his words of confidence in my "mom secret powers" to just know if there's something serious brewing.

Here's why:

This is the post when I spoke about finding her past infection.

This is the post that summarized how bad the infection really was.

Some things noteworthy (in my opinion):

She had a raging infection in her face - at the surgical site - post-op NINE weeks!
She did not have a fever.
She was eating like she always does - fighting every bite and throwing up as usual.
She was not acting lethargic.
The only time she was bothered was when you actually messed with her face or mouth.
In four days' time the infection almost killed her.

The doc yesterday gave me some material to try to make the cast more comfortable.  I told him that we have not been able to get the tape to stick to the cast.  She keeps sliding down in the chair and the tape inevitably rolls up.  So, he gave me some magic tape that wouldn't do that.  Yeah, right.  I'll believe it when I see it.

So, last night I washed her hair and washed her up the best I could.  And then I turned her over my lap so I could work on her cast.  It is a mess back there!  She cried the whole time, protesting my efforts.  I did the best I could.  But I don't see it making much of a difference.  After I was done she kept signing "hurt" which is a first.  She's never offered up that sign.  She kept wiggling around trying to find a comfortable spot, crying and signing "hurt."  Ugh.  It killed me!  So, I gave her a dose of Tylenol with codeine and within the hour she seemed better and finally fell asleep close to 10pm.

I will call the office in DC tomorrow and see what I can get done.  I'm going to argue for them to - at the very least - cut a window in the back of the cast.  That would put all questions to rest and would take the pressure off the sore.

By the time her surgeon can look at the cast and get her in the OR to get a new cast put on, we'll be at least two weeks from getting it off anyway.  So, I think she's going to have to make the call if that two weeks is worth it or not.  Maybe we could just put her in the brace.  I don't know.  I just know that she can't go three more weeks the way things are.  Something's gotta change.

So, I guess I'll know more tomorrow when I can get a hold of someone.

**********

It is now Monday morning, and I left messages with everyone I could.  I'm not hopeful that I'll hear back today.  One complaint I have is that all the voice mails I get start off with "if this is an emergency, please call 911.  Or leave a message and your phone call will be returned in one to two business days".  What?  Certainly there are situations where calling 911 is not the answer - but waiting one to two business days isn't either.  Ridiculous.  I am really beginning to hate the orthopedic specialty.

I guess my other option is to just drive up there and go to the ER and then they would have to see us.  I don't know.

Anyway, just in case you were wondering - that magic tape?  Not magic.  Of course it didn't stick.  I find it hard to believe that they've ever used that tape and thought it worked.  I guess if you put it on your arm or leg where you're not laying on it all day, it would probably do better.

And - another note - she's really not tolerating her feeds very well.  She's throwing up during the feedings, which is very unusual for her now.  I hope that's just a coincidence.

Oh, and by the way - for all my local Richmonders - the pediatric ER at MCV is awesome!  It's brand new and completely renovated from the way it was.  You don't even have to walk outside - so if the area scares you in any way (which it's not scary at all) you don't have to worry about that.  You leave the parking lot elevator and walk right into the ER.  And each exam room is a ROOM - no curtained areas.  And it's big.  Lots of rooms.  Which translates into less waiting room waiting.  On Saturday there was no one in the waiting room and I got walked right back into a room and had docs in there in minutes - and it wasn't even a real emergency.

And need I mention that it's a pediatric ER?  The only one in the area, by the way?  Your kid is seen by pediatric doctors - who only deal in pediatrics.  Whereas if you go to another local hospital, your kid would wait with every adult, too, and be seen by the same doc that sees adults.

Oh, how different it would be for my family (and everyone who lives in this area) if we had a full-service children's hospital like every other city our size.  Yes, we are now the only city of our size that does NOT have a children's hospital.  So sad.  And embarrassing.  Think of the jobs!  Think of the houses that all those employees would have to buy and the shopping that they would have to do if they lived here!

I'll stop now.  It just makes me mad.

Okay, hopefully today will be productive.

Thanks!
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

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

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