Surgery, take 1.

So, another long break between posts.  So sorry.  I wish I could say the long breaks mean we are way too busy having fun.  While we do try to have fun at every opportunity, it is just that life has been so busy with... stuff.  

I'll just focus today's update on Harlie, medically.  

The day after my last post (over two months ago!) Harlie developed a growth of some sort in front of her right ear.  I sent a text with a photo of it to Dr. Strauss (the plastic surgeon here locally).  He said he needed to see her.  So, we went to see him that afternoon.  He poked it and tried to get a culture.  He didn't know what it was.  This growth has a mind of it's own - it bleeds, drains some kind of fluid, swells, peels, turns red, turns black, etc. And it changes so fast. I took a picture of it at 4pm one day and by 7pm it looked completely different. Watching it has been an absolute ball. And the wound care? So fun! 

She has not been able to wear her hearing aid on her right side since her surgery in April. This has been a total drag. And I hate to complain about how my daughter's hearing loss affects me/us.  But, well, that's life, folks, so I'm doing it! 

Her in-the-ear hearing aid (versus her BAHA on the other side) connects to her tablet via blue tooth, so she can turn up the volume on her tablet to her heart's content and we don't have to suffer hear it. So, no hearing aid = no blue tooth = REALLY loud volume - for all of those around her. Oh, the sacrifice! Not to mention that we have to repeat ourselves, like a lot. I mean, that's already a given with kids, am I right? Now throw in some good hearing loss and well, that takes it to a new level of annoyance. And we try SO hard to not show her our annoyance. I mean, she can't help it, after all! I joke, but we aren't monsters! Not long ago, after I said a bunch of stuff to her, she looked at me with those cute little eyes of hers and an evil little grin and said, "I wasn't listening, can you repeat everything you just said?" 😑 That little jokester! I tell you, she is funny!

I scheduled an appointment with her audiologist to have her test her hearing and make a new mold for her hearing aid. I can't remember if I mentioned or not that the shape of her ear must have changed because of the jaw surgery. Since the temporal wall is shared by the jaw and the ear, the jaw surgery affected her ear shape.  I'm guessing here, though.  Because it is hard to tell if it was just swelling for so long - or if it changed for good.  We will know when we can finally try to put her hearing aid back in.  We haven't been able to because of that growth and because her ear canal has been full of debris.  And because that growth has made her whole ear really sensitive to touch. 

Anyway, her audiologist was unable to do any testing.  For one, she cannot wear the headphones in the booth because that growth is in the way. Also, her ear canal is full of debris.  So, her audiologist had a nurse practitioner take a look at Harlie while we were there.  The NP went and got a doctor (I think she told me he was an adult plastic surgeon) to take a look.  He also didn't know what it was. He said he needed to poke it to see what was in it. Here we go again (never got any useful information from the last time). Since Harlie was on her tablet, he said he could do it right then while she was distracted.  Haha! I love it when people don't realize how aware and smart Harlie is. 

So, he went and put gloves on and hid the needle behind her head.  Harlie turned towards him and said, "What are you doing?"  I think he was surprised. I'm guessing he knew he couldn't lie to her, so he said something like, I need to drain this growth, just look at your tablet, ok? Then she said, "Let me guess, you have a needle."  Haha!  He tried, but she wasn't having it. So, he grabbed some scissors and clipped it really fast. It only bled. In summary, he wasn't sure what it is but said it has to be removed in the OR. 

I ended up emailing her surgeon in Boston and sent him some photos and brought him up to date. At this point, three plastic surgeons had seen it. I asked her surgeon who should remove it - plastics or ENT?  Since we need to get the debris out of her ear canal, I sent photos to her ENT in DC.  He can remove the growth, clean her ear canal and do a bronchoscopy to see if anything has changed in her airway since her jaw surgeries. Sounds like the most efficient start. So, that is scheduled for Monday, August 2nd. 

After getting the date (like a month ago), her whole right ear got red and angry.  I sent new photos to her ENT and he put her on antibiotics.  While on these ABs, she developed a pocket of stuff on the left side! Now the left side keeps filling up with fluid (not blood) and draining some on it's own. More wound care, which got old like four years ago.  

Today is Saturday and her surgery is Monday.  She woke up this morning with a new pocket of fluid under her chin!!!  Are you kidding me?!?!?  This is the worst game of whack-a-mole, ever!

We have to look at her spots several times a day and we have been doing this for months now. The other night I looked at her left side and sighed.  She asked, "How does it look?" I (also not wanting to lie to her) told her it was swollen again.  Then she exclaimed, "OH, C'MON!"  She cracks me up.  She is so funny, even when things suck.  I have no idea where she got that kind of sense of humor.  ;-)

I have attempted to write this post several times since last week and I keep getting interrupted. Today is now Monday, and surgery is today. 

I have had numerous conversations with nursing staff from Children's National in the past week. Two pre-op nurses called to go over her history, etc. A nurse called me specifically to ask me when her Covid test is and that it is my responsibility to bring proof of a negative result. That conversation got old a year ago. I HATE being talked to like I am an irresponsible idiot. But, that is what everyone assumes now. We are all idiots who are a danger to society. 

Lastly, I got the nurse who called to tell me what time Harlie's surgery is (that is usually late in the day, the day before surgery).  I can't believe it, but they told me that she was scheduled for 5pm! Wow. Never has she been that late. And, honestly, I was surprised because it was her ENT that said he would never do surgery on her in the afternoon again. That was after he ended up having to do an airway reconstruction (called an LTR, which is a HUGE deal) at 3pm. 

So, I asked her if she was sure.  She said yes, Dr. P has a busy schedule that day.  I told her I was just really surprised, I didn't think he wanted her to be late in the day. She apologized, but what could I do? I was like, well, okay then. Maybe he feels confident that this won't turn into something more serious. Okay. Plus, she said Harlie is 14 now. And while I certainly know that's true, it doesn't mean that she acts like a 14 year old. And by "acts" in this sense, I'm talking about her medically. I just don't think lumping her in with every other 14 year old makes sense. But, blanket policies that disregard the particulars (and cater to the healthy and typical) are all the rage now.  

Take, for example, the NPO (nothing by mouth) instructions prior to surgery... the nurse calls and tells me she needs to be NPO after midnight - for a 5pm surgery time. That's 17 hours, people. Dumb. Totally dumb and completely unnecessary for her to go without eating for 17 freaking hours. This isn't a colonoscopy! Not to mention the complete disregard to her heart defects.  Her cardiac situation and passive blood flow requires that she stay well hydrated. Thankfully, I'm NOT an idiot and I know not to adhere to those instructions. So, I told her, sorry, I'm not doing that.  She is g-tube fed, and is tube fed liquid formula and she needs to stay hydrated. So, she tells me to stop her feedings 9 hours before surgery and I can give her clear liquids like GINGER ALE up to two hours before surgery.  I'm sorry, did I hear her right?  Did she really just tell me I could put ginger ale in her g-tube?!  Who does that?!  Why would someone do that?! I really don't think anyone would do that. Ugh, this is a major problem with over instructing people - they stop thinking for themselves.  She's on auto-pilot and isn't even listening to parents while she is doling out pre-surgical instructions!  

Anyway, earlier that day, Harlie had to have a preop check up and a covid test. I was stressing a little bit because the hospital requires a covid test to be done within 72 hours of surgery. This means that we had to do the test on Friday. But, that means that I can't have proof of results ON PAPER until Monday morning after the office opens at 8:30am. I say this because that's what the lady told me - that it was my responsibility to bring proof of results - on paper - with me to her appointment. But, without knowing what time the procedure was, how could I promise that? I mean, if her surgery is scheduled for 7:30am (which is the usual time for Harlie) then that means I have to arrive at the hospital at 6am. On a Monday. Which means I have to leave my house at 4am. So, how can I get the paper during the weekend when the office is closed? And, for some reason, this office will not email me the results.  This was a problem when I realized that I forgot to go pick up the paper for Cooper's negative results when we were driving through NEW YORK on the way to Maine for summer camp. UGH! For real.  Luckily, they said they would fax the results to the camp office. Regardless, that isn't going to work when the hospital needs the proof at 6am.  

My other option was to drive her to the hospital in DC and have her tested there.  So, I would take a day off from work, drive at least two hours to get there, get a 10-second swab, then drive at least two hours back, pay for gas, etc.  Um, no, thank you. 

So, when I was told that we didn't have to be at the hospital until 3pm, I was like, well, at least that solves the covid test problem. I can easily swing by the office before leaving my house at 1pm. Fine. 

We had a regular morning, worked out and I took my time, walked the dogs, and then got ready for the drive to DC. I packed an overnight bag (just in case) and started to load the car when I got a phone call at 12:30 from the hospital. I saw the number on my phone, and I was like, that's weird. It can't be good that they are calling me. 

Hello?
Hi, is this the parent of Harlie?
Yes, this is Christy. 
Hi, well, Dr. P wants to know if you can come next Monday instead of today. He doesn't want Harlie to be such a late case. 

Great. Took the day off from work for nothing. Awesome.  I also rescheduled her GI appointment and canceled her teacher today.  Apparently, they were supposed to tell me on Friday. 

Now I have to do all of that again - the covid test, taking a day off from work, canceling her teacher, and her speech therapy next Monday. Except now I get to worry about that freaking piece of paper with her covid-negative results because she said she will be an early case.  I'll have to call her doc tomorrow and get something figured out. I don't want to deal with that today. I'm taking the rest of the day off. 

But, you have to take the good with the bad. And I love Dr. P.  And one of the many reasons why I love him so much is that he isn't even scheduled to be in the OR next Monday. But, he is going to go in JUST FOR HER because he does not want her to go in to the OR so late in the day. So, he must remember that day three years ago as much as I do. Man, there is something so great about that. 

Oh, before I go, here are some random pics since I haven't shared any in so long...

Harlie reading to Mabel.

Harlie at the paint store.

Harlie's growth-thing at different stages...

The growth-thing on the left side.

Harlie checking out her bird book on the deck the other night. 

Harlie at speech therapy, sporting her speaking valve.

She's really been a super busybody lately. She must be feeling better and her blood levels must be getting back to normal. She definitely has more energy now. 

Okay, that's it for now. I have so much more to share, but I will have to share later. I'm going to take advantage of this impromptu "free-time" and take Harlie to visit my mom. As always, thank you so much for caring about this crazy girl of ours. We do love her so much, and we appreciate that so many of you love her, too. 

Much love,

Christy xo