September Recap

Hi! So much time has passed, that it is hard to know where to start. Here's what I started to write ages ago... 

September 1, Wednesday

We left the hospital and made it home five minutes before the IV medication/supplies delivery.  It is so funny to me how important the "little things" are to us - especially during stressful times. We were expecting IV medication balls (which is what we've used the two other times she's come home with a PICC line in 2010 and 2013).  The rep that visited Harlie's room in the hospital told me they would be the medicine balls, and they need to be stored in the refrigerator, so Tom cleaned out the fridge in the garage so we would have room. We opened the medication box and they were NOT the medicine balls, and the instructions said to store them at room temperature. Of course. 

The reason why this switch was frustrating to us is because with the medication balls, there is very little room for error. It was as stress-free as dosing IV meds at home could be. With the meds this time, we had to mix the meds, and prime a line. The line had to be changed every 24 hours. But, in between doses, you had to make sure it was protected and kept clean. And when you are tired, it can be stressful to double (okay, triple) check yourself every time you alcohol swab, put in saline, alcohol swab, hook up the meds, wait for it to finish infusing, alcohol swab, saline, alcohol swab, heparin, etc. I know I made this harder than it was. I was just always so scared I was going to make a mistake and accidentally hurt her. 

The meds were ordered for every six hours. And she came home with med times at 3pm, 9pm, 3am, and 9am. It took about an hour or more to infuse. So, the 3am one was awful. We slowly adjusted the times and changed them to 5am, 11am, 5pm and 11pm.  Any way you do it, you're going to lose some sleep. Meds were ordered for 14 days. But the ID doc at the hospital told me that it would more of a clinical decision as to when to stop (based on how her skin looked). 

September 2, Thursday

We had already scheduled an appointment with a new-to-Harlie Electrophysiologist (EP) from Children's National that works out of a satellite office here in Richmond. I can't remember if I mentioned earlier, but Harlie's pacemaker has about a year left on the battery.  It is a minor surgery to replace the battery, IF the leads to her heart are okay. They placed the leads in her heart when she was just four days old. She is about to turn 15. So, I guess they test them or something ahead of time? So, now that we are at a year out on the battery, we have to see an EP more regularly and send submissions from her pacemaker every month. We do the submissions at home, and it goes through the phone line? Well, it used to go though a phone line, but maybe now it goes wireless?  I don't know, nor care really. It goes through, and then they call me to tell me all is well. 

Anyway, so we went to see that doc. She was nice and all was good there. Apparently, the typical method is to wait until the battery is really low before you change it. It has some safe guards and will go to other battery-saving settings until it gets replaced. She said it just doesn't shut off one day. But, in Harlie's case, there are no guarantees that things will go as planned. Often, other issues will come up that change the priority list (surgeries, infections, sickness). So, they are going to leave some room for error. 

I had to laugh when we went to the appointment. Look at the sign on the elevator. 

Okay, Harlie, just wheel yourself out, and we'll meet you in the lobby.  You have a two-year old? Just let 'em go down alone. I mean, that is the safest, right? Haha! 

September 3, Friday

A friend of mine surprised me with cupcakes and cookies. I couldn't get a picture before the cookies were eaten. 

Thank you, Shawn! You are the best! xo

September 4, Saturday

Harlie broke out her guitar and found a website that teaches you how to play - all on her own! She has been working hard all by herself. She went through all the free aspects of the website and then got to a place where you have to pay for a subscription to get to the next thing. She brought her tablet to me to do it. I have NO idea if this is a good website or not. 

So, I asked Facebook for some guitar lesson recommendations. I don't know if you remember back in May when Harlie was in the hospital here at VCU, she had a music therapist (Brooke) come and play for her. Well, she reached out to me and said she would love to work with Harlie and will come to our house every week.  She has now come two times and she says Harlie is doing great! She's already learned so much on her own! I had Harlie show her that website and ask her if it was worth doing and she said yes. So, we got her the subscription so now Harlie can practice to her heart's content. 

We will definitely have to get her a better guitar. We'll see how she does over the next couple of months and we'll get her one for Christmas if she's still enjoying it. 

September 8, Wednesday

This was the first day of school for the boys. 

Cooper - 7th Grade

Murphy - 12th Grade

I went to Harlie's school on the 7th to make sure all was okay for Harlie to start. She is supposed to go to school for Advisory class every morning, and she is taking Art later in the day (every other day, since they are on a block schedule). Well, there is a lot of paperwork the school nurse has to do and she didn't realize that Harlie was going to be in the building, so that took some time. Unfortunately, that meant that Harlie had to wait a bit to start. 

I also found out that Harlie's teacher who has been coming to our house for a long time (I think she's been teaching Harlie since the 3rd grade) will not be returning as her teacher this year. It is so hard when we get attached to people and they have to leave. This change started a landslide of feelings for me and problems getting Harlie on track for school. I can't possibly go into it now. Just know that when your kid needs a teacher with special skills, patience, ingenuity, creativity, compassion, etc., and you have one that you like, a teacher change is a BIG FREAKING DEAL. 

September 9, Thursday

Harlie had an appointment with both Infectious Disease and wound care, both in DC. Unfortunately we couldn't see the same ID doc we saw when Harlie was in during her PICC line placement. Coordinating ID and wound care wasn't easy. So instead of driving to DC on two different days, I sacrificed the doc for the convenience. Rookie mistake. There is no convenience in special needs. I don't know if the outcome would've been different or not. But, this doc felt confident that the infection was gone. She said there was no evidence of an ongoing infection and that she felt it was very unlikely to have gotten to the hardware in her jaw. 

My eyes must've looked skeptical over my mask, because she asked me what I was thinking. I told her I want to believe her and I want her to be right. But so often providers are wrong. I'm not saying that in a mean way. Harlie is a complex kiddo and oftentimes things just don't go the way one would expect. With her, you have to expect the unexpected. I think being wrong about this one is too risky and I said as much to her. 

But, then she explained to me why it wasn't beneficial to keep her on the meds longer. I was a little concerned that she was thinking about how hard it was on us parents to deal with the PICC line. Granted, it isn't easy. But, I told her I would do it for as long as I had to if it meant not having to take out the jaw hardware. 

In the end, she discontinued the antibiotics after a 14-day treatment (which was the following Monday, September13th). I spoke my peace, but I am no ID doc.

While we were there, we had to give Harlie a dose of her IV meds. That was a little bit of a pain since the meds have to be higher than Harlie's arm to drain in. See, if we had the medicine balls, it wouldn't have mattered. 

Anyway, Harlie told us that we needed a pole on her chair. I don't think we understood what she was saying, so she drew it on her tablet.  

She said she needed a new (or different? I don't remember) wheelchair. Of course, we said, Harlie, we don't have a different wheelchair. Where are we going to get one? She said "here" and we were like, no, there are no wheelchairs here. 

Then we left and when we got off the elevator, look at what was right there.

That's what she meant! She meant borrow a hospital one! Duh! We both saw the chair and she said, "Told ya." She doesn't get enough credit for being right. 

September 11, Saturday

Tom and I went to a wedding shower for Caylee (Harlie's nurse) and Blake. It was a lot of fun. 

Blake, me, Caylee and Maggie

September 12, Sunday

We went to a bridal brunch for Caylee. 

Harlie is a junior bridesmaid, so she got to go, too. She had a great time and "won" a guess how many kisses are in the jar. What a coincidence that the prize was a Ty plushie (that she didn't already have!) and some cute fingernail polish. Haha! That Caylee thinks of everything!

It was also the first game for the Steelers, which they won. Spoiler alert, they haven't won again since. 

September 14, Tuesday

A nurse came to remove Harlie's PICC line. That went fine. 

September 17, Friday

Today was Harlie's first day back in the school building since November of 2019! Maybe I've already mentioned it (so sorry) but Harlie got the flu in November of 2019 and spent two weeks in the hospital (most of it on the ventilator). Since she had jaw distraction surgery scheduled for March 6, 2020, we just couldn't risk her getting sick again, so we kept her home, thinking we would send her back to school after the surgery. But, then Covid happened.  By the time kids were able to choose to go back, we were gearing up for Harlie's TMJ replacement surgery in April of 2021. So, we didn't think sending her back was a good idea.  Now here we are... almost two years later, and she's finally back in the school building. Look at how happy she was!

Woohoo!

Sometime in later September, we had some issues with Harlie and her education. Again, too much for me to go into in this post. All I can say is that I felt very worried that Harlie would get even further behind and not get what she needs in order to be as successful as possible. Having to micro manage her health and her education (plus work outside the home) has left me completely spent. This is a really hard thing for me to try and explain to those that have never had to do either of those things - much less both at the same time. I'll have to save her education for it's own dedicated post - IF I ever get the energy to re-live it and write it down. 

September 23, Thursday

Sigh. I wish I could say I was surprised. Sometimes, I really hate it when I'm right. 

The growth grew back! Less than 10 days after coming off the antibiotics. I hope they told the ID doc that said she felt confident it was gone. This is a prime learning opportunity for her. 

I took a pic and emailed her ENT in DC. He called me that afternoon - but I was in a meeting and didn't see his call! Ugh! But, he contacted her ID doc and she called me later that day (her original ID doc from her hospital stay - NOT the one we saw who discontinued the antibiotics). She scheduled a virtual appointment for us to talk the very next day (Friday) and scheduled an in person appointment for Monday.  

September 24, Friday

During our virtual appointment, she put her on an oral antibiotic for me to start immediately. She even called our local CVS to make sure they had it in stock (it is a liquid, which is not the common what it is prescribed). They did not, so she found another local CVS that did have it and called it in to that one so I could get it asap. Docs don't normally do that, so I really appreciated her going the extra mile. 

September 25, Saturday

Today was Harlie's birthday!  She turned 15! 

For her birthday, she wanted to go on a long walk, go on a picnic, and I can't remember what else right now. Oh, maybe plant some bulbs? We did everything she wanted to do that day. I took lots of pictures, so I'll have to dedicate a separate post for that. I think she had a great day. 

Oh, the things that interest her. 

Dad showing her.

September 26, Sunday

Today was Cooper's birthday!  He turned 13! 

For his birthday he wanted to do some stuff with his friends, which he did. I can't remember if I have said this before (pretty sure I have) but gift giving is NOT my love language and birthday parties are not my strength. 

September 27, Monday

We had Harlie's appointment with her ID doc. She called in the wound care nurse who saw us when Harlie was in the hospital. By this time it had already grown back to the full size it was at the time of removal. So crazy, and extremely disappointing, at how fast it grew back.  Her doctor expressed that she is willing to give this antibiotic a chance. She is totally supportive of trying to save these joints as long as Harlie's health isn't at risk. At this point, the infection looks like it is at the skin only (not in her blood). 

The wound care nurse (Sam) said there is nothing to do really, since it isn't an open wound - it is a closed growth of some sort. Her ID doc did say it is a very unusual reaction to an infection, and she hasn't ever seen this exact situation before. That is so Harlie. 

Within a few more days of being on this antibiotic (Doxycycline) the growth started to "dry" up and shrink. So, it appears to be working. We will stay the course for a while and make decisions as we go. 

I will stop this post here because it is already so long. I will pick up with October soon. I can't believe how much of my life I share and could share. In the interest of time, both yours and mine, I've skipped a lot of stuff. Haha! Shockingly, this is just the highlights. 

Thanks so much for checking in, continuing to read my posts, and being so incredibly supportive of our girl and our family.  I appreciate it more than you'll ever know!

Much love,

Christy xo

Update

Hi! All is going okay here. It has been very busy. Harlie got the PICC line on Monday and they admitted her so they could make sure she had the right antibiotics on board. Plus, it takes some time to set up getting the meds delivered to our home. 

I'll spare you all the details of "plans" constantly changing. You definitely have to ask a lot of questions and stay light on your feet while in the hospital.  There have been lots of people to talk to - ENT, wound care, ID, cardiology (she got an echo while she was here). And I got to see Harlie's social worker and spend some time talking with her. It is SO good to talk to someone who understands this hospital life.

Anyway, I'll summarize with what I know at this point... 

There's no way to tell where the infection is exactly (whether it is on the skin only and/or if it on her joints). So, we treat with IV antibiotics and wait and see what happens. The length of time she will be on these IV antibiotics will depend on how the wounds look. If they heal and go away, we stop treatment, and then wait and see what happens. If the wounds come back, then that tells them that the bacteria is on the joints.

I suppose if the wounds don't heal at all, that could mean the bacteria is on the joints as well. So, we'll just have to wait and see. 

Right now she is on Unasyn and she gets it every six hours (she was on Vancomycin, but they changed it to Unasyn last night). So, they are trying to discharge us in time for me to drive home and be home by her 3pm dose. A nurse is scheduled to come to our house with a week's supply of the Unasyn and make sure we know how to administer it. I think this is her 3rd PICC line, so I remember how to do it. It is now 11am, so we'll see how this works out.  

Yesterday was me and Tom's 19th wedding anniversary. We will have to celebrate later. Harlie put the date on her calendar on her tablet. So, first thing yesterday morning she said, "Happy Anniversary!" She's so sweet. Later in the day I got a text from Murphy -  i wanna pierce my ears. Insert eye roll emoji. Sigh... parenting is so fun sometimes. I mean, does he even know we are in the hospital?! Haha!

I know she always looks like she's all smiles, but it really isn't like that all the time. She had a really rough night Monday night.  She was so sad and seemed so lonely. This hospital life is SO hard. I watch her walk gingerly to the bathroom, things connected, and she is way too experienced for her age. It makes me so sad. I feel lonely, and I have friends to talk to, friends who love me. She doesn't. I really need to figure out a way to get her connected to some other kids. 

Last night my friend Mona came to pick me up and she took me to dinner.  We had a great time with lots of laughs, great food and wine. Thank you, Mona!!! 

I have to be short because I need to pack us up and take some things to the car so I'm ready to walk her down as soon as they are done with the discharge stuff. 

Oh no. Harlie's nurse just came in to say that she heard there was a snag with her home meds. Yesterday I heard all was fine and set up.  Ugh. Not sure what's going on. Hopefully that is just miscommunication. 

Well, thank you for all your sweet, supportive, encouraging comments on Facebook/Instagram. We appreciate you all and your willingness to go through this with us more than you know. 

Much love,

Christy xo

Not looking good...

Hi!  So, there have been some developments since my last post. Harlie had her follow up appointment with her ENT in DC on Wednesday. One of the dressings had not fallen off yet. He removed it and didn't love what he saw. It appears that the growth (abscess) is already growing back. He had his wound care nurse come and look at her wounds and give me some directions on how to care for them. We know her from years before, so she knows Harlie and her past issues with wounds. 

While we were doing wound care, her ENT went and spoke to the infectious disease (ID) docs. They all agree that she needs more aggressive treatment. A few days after my last update, I received the labs from her cultures - Staph bacteria. Unfortunately, Harlie is allergic to the oral meds that treat Staph. So, she needs IV antibiotics. He offered to admit her right then, so she could begin IV treatment that night and then while inpatient, they could give her a PICC line so she could come home and get IV treatment here. She's had a PICC line at home twice before, so we are familiar with this process.  

However, Harlie's nurse, Brandy was with us and I didn't pack anything, of course. So, being admitted right then would have been really, really uncomfortable and logistically challenging. I said I needed to take Brandy home, and pack, but I could come back anytime (even that night). He said that they would call me and tell me when to come back based on bed availability. So, we left. 

Traffic was the worst leaving DC that I have ever seen. The entrance to 395 was completely closed and forced everyone to detour, which was just complete chaos. I really don't know how people deal with that traffic all the time. 

After we got home, I got an email from Harlie's surgeon in Boston. He asked me how she was doing. I replied and gave him an update - that her ENT wants her to start IV treatment. He replied quickly and basically said that he worries/expects that this infection will not fully clear unless we remove the joints. He said they should come out sooner rather than later. 

I really don't know how to express how devastating this would be. If he needs to remove her TMJ joints, it means that her surgery in April was for nothing. All that bruising and bleeding and pain -  for nothing. 

Not to mention, the risk of losing the little airway we gained because of the joints. Her stronger voice, her recent ability to wear a speaking valve, even her cap for small periods of time - all of that could be lost. 

Would we even be able to try it again?  

I just can't. The thought of traveling back to Boston, for another jaw surgery - but this time to go backwards?!  No forward progress to look forward to, no forward progress to help keep us all positive.  What do we tell her?!  How do we explain this to her? 

I just can't. 

Regardless, she needs IV treatment asap. At this point, I don't see the harm in at least giving the IV antibiotics a chance. Maybe, by some miracle, the staph is really only on her skin and not on the joints inside. I haven't spoken with ID yet, so I don't really have a lot of information. 

Anyway, on my way home from DC that night, they called and told me that I should expect a call sometime late morning on Thursday, letting me know a bed was ready. The next morning, I packed and got all ready. I thought about going on ahead and driving towards DC. Maybe we could stop at Tyson's Corner, or something so we were that much closer when they called. I mentioned that to Tom when he called that morning to check on things. He said, no, what if they call you with a change in the plan. So true. So, I didn't leave. Then they called and told me that insurance denied the hospitalization. WHAT?

It was at this point that I completely regretted my decision to drive home that afternoon. Maybe if I had just stayed and let Brandy drive my car back, everything would have been fine. Ugh. If only I had more information! I just had no idea that could be a consequence! 

I gave him all the reasons why this is wrong. I told him that her doctors needed to try again. This is another problem with fragmented care - the doctor that truly knows what's at stake is in a different state and not a part of this insurance pre-approval process.  Despite how devastating the consequences are to Harlie and my family, the financial aspect should mean something to them. I mean, the cost of removing the joints would be way more expensive than a quick few nights in the hospital getting a PICC line, hopefully avoiding the joint removal. But, they don't know that! 

On Friday they called me to schedule her PICC line placement on Monday, as an outpatient procedure. They started her on an oral antibiotic in the meantime, although I don't understand this at all (after being told that she is allergic to all the oral meds that staph is susceptible to). She is scheduled for tomorrow, August 30. 

I really know very little at this point. I don't know what they are going to put her on (maybe Vancomycin?) or for how long. Remembering what it was like with her previous PICC lines/IV treatment (also due to post-op infections) it takes some time to set up getting IV meds at home. I mean, I guess it could be done in one day, I just don't see how that's very likely. I don't know. I'm packing bags, just in case things change - again. 

I want so badly to hope that somehow things will go her way this time. But, after we got home on Wednesday night I did her wound care (have to do it two times a day).  And when I removed the dressings we put on that afternoon, I was shocked to see that the growth on the left side had gotten substantially larger in just a few hours. Despite my hope that IV antibiotics will help, it isn't looking good. 

Well, this is all I have time for tonight. We have to be on the road well before sunlight tomorrow. She has to take a covid test first thing in the morning and we have to wait three hours for the results, then they can do the procedure. Under anesthesia, by the way. After the last incident - it is too soon for her to go back under anesthesia. 

Oh, I have to tell you a funny story before I go. On Friday morning, I was running an errand with Harlie and we were headed to the car when the trash company arrived to collect the trash. She asked me if she could watch them. I said, of course. So, she walked to the center of our driveway and stood there, watching them. After they had collected our trash, she gave the guys a smile and a thumbs up.  Haha! Something about that kid just cracks me up. Despite all she has going on - and her stuff is some serious stuff - she really seems pretty content with life. Even giving a silent "good job" to the trash collectors. She is a funny kiddo. 

Oh, and one more thing, we were finally able to renovate the kids' bathroom to make it more Harlie friendly (I'll have to update on that later). When we went to Maine to pick up Cooper from summer camp we went into a cute store and I saw this little sign, and thought of her (and the boys, too). 

Okay, I will update tomorrow with how things went - or didn't go - or whatever the hell happens. 

As always, thanks for the love!

Christy xo

Surgery Take 2

Hi all!

Thank you for your thoughts and messages and prayers and all that. I'm sorry I haven't updated to let you know how things went. I should probably warn you that I'm struggling today. That is harder to admit than it should be. I mean, I feel like I've more than earned my feelings. I don't know why it is so difficult for me to admit when I'm feeling particularly sad. But, I am. And angry. Life is way too hard some days. There's a lot going on in my head and in this post, so please, bear with me.  

Monday was an early morning. We were on the road by 4:30am. Overall, traffic was okay. There were a few accidents on 95, but they didn't slow us down that much. We were still at the hospital early. 

Her ENT came to see her in pre-op and he took one look at the growth by her right ear and said it is an abscess.  He said it was hard to tell exactly in a photo. And there are so many people that believe telehealth is just as good as in person care... As you can probably guess, I am not one of those people. And if you were Harlie's parent, you would feel the same way. 

So, we are in pre-op and I'm answering the same questions over and over again. So fun. I sent Tom a text complaining about it - oh, the repetitive nature of medicine (while necessary in some cases) drives me crazy.  I guess if we were like typical people and only went into the OR once or twice (or none) it wouldn't be so bad. But we are here SO.MANY.TIMES.  He replied with "Can you tell me why you're here today?"  Haha! I got asked that by four separate people. As well as stating her name, spelling it, her birthday, our address, etc. 

I also get asked, "Has she ever had any issues with anesthesia?" And I have always been so thankful to say, "No, thank God." I mean, can you imagine having to go into the OR as many times as she has (like well over 70 now) and having issues with anesthesia?  

Hold that thought...

So, they took her back around 9:30. They told me parents are no longer allowed to wait in the waiting room. You have to go to the cafeteria and they will buzz you. Oh, being a lifer in medicine is so much harder now.  

Anyway, I think I got called back around 10:45ish. Dr. Preciado and I went into a conference room and he told me that he drained and removed the growth on the right side. He put in three dissolvable sutures. Although her skin is so tight that he couldn't get it to totally close in one area.  I can't remember what he said he did about that. It had grown considerably since it first appeared in May. I can't help but wonder if the size of it made conditions worse for her. It is so hard to get her in front of doctors and get scheduled for stuff now.  

This leaves me feeling frustrated and worried that because the world is so focused on Covid, that it increases the possibility of missing something more threatening to a patient like Harlie. Unfortunately, there are so many more potential causes of great harm to Harlie than just one virus. We don't have the luxury to worry about just Covid, and we can't let that stop us from doing what Harlie needs us to do to keep her safe.  And by safe, I don't mean getting sick. I mean not dying. 

Anyway, he couldn't do much with the spot on the left side - said he irrigated it and treated it with silver (what they use for burns).  The area under her chin, he couldn't do anything about. So, that sensitive, draining growth (granuloma) is here to stay for a while. Not sure what we can do about that, which is terrible because cleaning it every day is a nightmare. And she hates it. He said we need to wait for cultures to come back. I need to keep her on Clinda until I hear if/when we need to change them. Hopefully we'll hear something soon. I just want to feel some relief that the hardware in her jaw is okay. Is that even possible?

He also did a bronchoscopy. He is happy with how her airway looks for the most part. I think he said it is 4mm? I asked him what it is supposed to be and he said, 6, 7 or 8.  He said she has a voice, and can tolerate a speaking valve and trach changes are easy - all improvements from 2017/2018. We did talk about what is needed for potential decannulation and it isn't good.  She would need another LTR (airway reconstruction, which is what she had in February of 2018).  He said he would have a hard time agreeing to that considering how her skin had/has such a hard time healing. Not to mention that she has too many surgeries ahead of her and intubation through her mouth is just not possible. So, she needs the trach for several reasons, and right now those problems are not solvable. 

It wasn't lost on me that we were having this conversation just days from the anniversary of her decannulation.  Which, is today, by the way.  She was decannulated on August 11, 2015.  I can't believe that was six long years ago. Almost feels like it never happened. 

It is also the very day I watched her struggle to breathe ALL DAY in Boston Children's Hospital in 2017.  And that night at 11pm, she was emergently re-trached. 

Yes, today is doozy. 

Anyway, he said I could see her in the PACU (post anesthesia care unit). Oh, he also suctioned out her ear canal and said it was full of old blood (which I totally knew). He said her ear drum looks great, though, so that's good. 

So, I headed to the PACU. As I was walking in the unit, he was walking out and he told me that she was in Bay 31 and she was NOT happy.  Hmm, that's odd, I thought. 

She was crying and hitting the bed rail with her fist. She was basically screaming that she was in so much pain. Her nurse was already getting her some pain meds. The feeling in the room was definitely intense. I have NEVER seen her like that. I told her nurse that this was so strange and unusual. I mean, NEVER after any surgery has she ever been this "awake" this soon after and NEVER have I seen her cry tears - and she has had so many worse procedures!  What the heck?  She was inconsolable. Her nurse gave her Fentanyl, then Tylenol, then after 15 minutes gave her another dose of Fentanyl.  I mean, it was bad. 

She finally calmed down a bit and her nurse went into the hallway and I sat down. I got out my phone to call Tom when I noticed the room got really quiet. I mean, Harlie's breathing is pretty loud. So, I looked at her and it didn't look like she was breathing. I stood up and put my hand on her chest and shook her and called her name. Then she took some breaths. I looked at the monitor and her sats were 91. That made NO sense. Her normal sats are mid-80s - 91 is high for her. She wasn't on oxygen. And I know she wasn't breathing there for a second. So weird. 

So, I watched her and she did it again!  I again, shook her and called her name. Sats still good.  So weird. So, I went to ask her nurse to check her just to make sure I wasn't going crazy. But, she was on the phone. She could see I wanted her so she came in the room. I told her it looks like she's having episodes of not breathing. She got out her stethoscope to listen to her, but Harlie interrupted her and said, "oxygen." So, her nurse went to hook that up.  I looked at the monitor and her sats were still good. So confusing! 

Then Harlie did it again. But, this time, she opened her eyes really wide, and then she just went away. There was no focus in her eyes at all and she turned blue. She was completely unresponsive. I looked up at the monitor and her sats dropped to 36 in like one second (that was the last time I looked up so I don't know how low that number got). We shook the hell out of her and yelled her name and the nurse hit the button to call for help. 

Someone yelled, "Does she have a trach?" I don't remember who said yes, it could've been me for all I know. They said, "change it!" So, I grabbed her go bag which was on her bed and got a new trach out and opened it. I am so thankful I was on the correct side of Harlie to be able to use my right hand!  I asked for lube and someone put it on the trach, and then I changed her trach. My hands were shaking SO bad I could hardly thread the trach ties through to secure it in place! It was so awful! After it was secure, we gave her a ton of oxygen, I think someone bagged her for a second and then she "came to." 

Several nurses/staff said nice things to me and were just being supportive, in general. I wanted to cry. I was so angry and scared and mad. But, I didn't. I think the charge nurse or someone like that came in to ask us about what happened. While I was answering her questions, I said something like I noticed she wasn't making any sound, she breathes pretty loud and then Harlie said, "No I don't." Oh, that girl! 

The anesthesiologist who was in her case came, too. He said she had a post-anesthesia episode. I'll say! Strange considering how many times she's had anesthesia. He came back to check on her several more times that afternoon.  

After she was stable and things calmed down, she fell asleep for like three hours. 

I was finally able to call Tom and tell him everything.  I feel so bad for him to have to hear so much of what goes on over the phone versus being able to be present. 

When she woke up the next time, she was her normal self again. It was like everything that happened from the OR up to the incident - she was NOT okay. The crying, the hitting, the breathing...none of that was normal for her. 

She even smiled for me. She doesn't seem to remember anything about what happened. Lucky for her.  Haha!

The anesthesiologist wrote down what he gave her during the case and what was given to her after so I could tell future anesthesiologists.  So, remember when I used to be able to say she's never had any issues with anesthesia?  Yeah, those were good times.  What does this mean for next time? Is it more likely to happen again?  Is this her body's way of trying to tell me she's had enough?  

They kept her for most of the day, and let me take her home at about 4pm. The craziness happened between 11 and 12. On the way out of her room, her nurse said something about a mask for her... I must have looked at her "funny" because she immediately realized her error and said, never mind! Keep in mind she had a negative covid test on Friday. And we just watched her stop breathing. There is no way in hell I will EVER cover up her airway. No.freaking.way. Just stay away from her if you're worried about yourself.  

I forgot to mention that an EP (electrophysiology) nurse came to adjust her pacemaker since they were going to be cauterizing her wounds. They come before and after surgery to adjust her settings. She told me that Harlie's pacemaker battery is getting low (she has about 14 months left). So, we need to start sending in monthly pacemaker submissions and seeing an EP doc more regularly so we can prepare to have that changed in the OR at some point. She also needs another heart cath, so hopefully we can have them do both at the same time. 

I promise I try so hard to stay out of doctor's offices!  But, it is just impossible! There is always something that I have to address.  

Yesterday, Harlie saw something about back to school supplies. She looked at me and asked if she could go back to school. I told her I didn't know. She put her hands together and pleaded, "Please! I love science! I want to go to science and art class at school." I told her again, that I didn't know and that I would have to talk to her teacher. She said, "Are you scared I'm going to get sick? Stop being paranoid. I'm not afraid of being sick." She tells me I'm being paranoid a lot. I want to say, hold on Harlie, let me save your life again, then we can finish this conversation. 

Oh, we are in such a unique situation. So many people take the freedoms of things like breathing, attending school, learning, etc. for granted. Harlie wants to go to school so badly. She always has. But the decision to send her to school isn't just about getting sick. It is about her overall well being - mentally and physically.  And it is about the best way to educate her. 

We don't have a nurse this week (she's on vacation). I think I'm kinda glad because I don't think I'd feel up for going to work anyway. She hasn't felt like doing much, either, so I've cancelled most of her appointments for this week. Today, she wanted to go to the mall and walk around. So, we did. Maybe that wasn't the best idea. I really felt the stares today. I forget that she has dressings on the sides of her head that are a little bloody. I wonder if people are so distanced-focused (and Harlie's not wearing a mask) that they just avoid. This one family watched me struggle to get her in the door of a store.  The front wheels got stuck and I couldn't hold the door open and lift her chair at the same time. I got it after a bit, but geez! After I got in, she said, oh, I was thinking you were a pro.  WTF? And then seeing girls who are probably her age hanging out with friends and stuff.  Just makes me so sad how different her life is than the way it should be. I want to make it so much better for her.  

Well, I wish I could end this post on a positive note. But, some days are just like that. We will get through it, it just hurts like hell today. 

Thank you for thinking of her, and us. I do really appreciate it.

Much love, 
Christy xo

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

Update since being home from the hospital.

So, I started writing this a few weeks ago... I just couldn't get back to it.  So, here is a general update on what's been going on...

Wow.  We have been home from the hospital for two weeks (it's been three weeks now).  Things have been VERY busy.  

On April 25, Harlie was still bleeding. This was one day after leaving the hospital. Dr. Strauss came to our house and applied a pressure dressing. 

Throughout this whole bleeding ordeal, I was reminded of the Vegas Vacation movie.  Granted, it was pretty bad.  Nothing like Christmas Vacation, which is my favorite movie of all time. Anyway, there is a scene in Vegas Vacation that came to mind as we would stop the bleeding in one place, just to have her start bleeding in another. 

On Tuesday, April 27, I emailed her GI nurse practitioner.  I gave her an update on her feeding issues, etc.  I went for a walk and during my walk I got like 4 Harlie-related phone calls. I ended up walking several miles, all while talking on the phone with different providers. Sometimes I think there is no escape. Haha! Anyway, on the way home, an Edible Arrangement van passed me in my neighborhood. I thought, some lucky just got some fresh fruit. I've always wanted one of those. Then I got home and saw that the lucky was ME! Haha! Tom's mom and sisters sent it to me. It was so good!

Anyway, her GI NP emailed me back and ordered x-rays.  We took her that afternoon. 

That afternoon, Murphy had to be at work at 4pm and I had a parent track team meeting at Cooper's middle school at 5pm.  There was an issue with the orders and it took a long time to get that sorted out.  I told Murphy there was no way we were going to be back in time for me to take him to work.  So, he called a neighbor, and luckily she was able to take him. Coincidentally she was taking her daughter to skate practice right across the street from his work at the same time! I love it when things work out like that. 

When we finally got back to do the x-rays, we had a tech in training. This made taking her x-rays four times longer than it normally would take. I was watching the clock, hoping I could make it to the parent meeting without being late. Being patient in moments like that is really hard. 

We rushed home, I dropped off Harlie and Brandy and then I went to Cooper's middle school for the meeting.  Yes, I was like five minutes late. It is really hard to switch gears from all of Harlie's stuff to standing there in a group of parents hearing about details of practice, meets, how to get water to the kids during practice, etc. I just feel like I'm not wholly in one place. It makes me feel lonely sometimes. 

Wednesday, April 28th was Tom's birthday. I feel so bad for him. His birthdays have often been overshadowed by Harlie's medical stressors. We ended up going to our favorite restaurant and meeting some friends there. Since the bar is open again, we were able to do one of our favorite things and SIT AT THE BAR!  Haha!  

Earlier that day, I had a virtual meeting with Harlie's GI nurse practitioner. She put Harlie back on some meds to help her body process her feedings a little faster. She said her x-rays were fine, so that's good. But, we are back on the feeding pump and we have to feed her so slowly.  This is definitely a step backwards.  I'm sure it is only temporary, but it is showing a trend of a slower/more difficult recovery from a hospitalization that I don't like. If this was an isolated incident, it would be okay. I'm practically laughing at the thought of an isolated incident with her. Haha. Nope - she isn't done and we know there will be more surgeries/hospitalizations ahead. So, the thought that her body is having a harder time recovering is REALLY weighing on me. I'm trying to stay in the moment and not think too much in the future. But, it is hard.

One of the meds she put her on ended up being a little problematic getting filled. Apparently, Medicaid would only pay for NAME BRAND and not generic. WTH? So, they had to order it, which took two days! So frustrating when she could've had generic that same day. And, for some reason, they had to send it to a different pharmacy. Super. Of course, all of this meant that I had to take three different phone calls during Tom's birthday dinner. 

Thursday, April 29th we had an appointment with Harlie's local cardiologist. She had an echo and EKG. 

All looked good for her. He said her chest x-rays from Tuesday were fine. And he said that based on her most recent labs, her hemoglobin is low. That explains her being out of breath from a little activity (like walking up the stairs) and her low sats. He said that while her hemoglobin is within normal limits of a normal person, it is low for her since she is cyanotic. This is when it is frustrating/difficult for her - no one specialist knows enough about her. So, I said, do they (hematology) know that? He said he would make a note in her chart. I told him I hadn't heard from hematology yet and if we are waiting for them to do anything about her being anemic, I want to see them sooner rather than later. Also, we are holding her daily aspirin until we learn more about her bleeding issue. And cardiac kids take aspirin because it is supposed to help reduce the risk of stroke. So, I just really want to get all this sorted out so I can take that off my mind. Geez, I'm running out of room up there! So, he said he would request for them to call me to make an appointment. 

On Friday, April 30th, I went to the "new to me" pharmacy to get Harlie's name brand med. When the pharmacist gave it to me he told me to shake it up really good, as he was demonstrating how to shake it properly. Thank goodness, because I've never shaken anything before. Then he gave me three, 1ml syringes. He told me that the dose was 1.4mls, three times per day. He then told me that I would have to fill up one 1ml syringe and then fill another one up to .4.  For real. Is this where we are now? No one is assumed to have any intelligence? Luckily, I walked there, so I was able to walk off my annoyance at the interaction. 

I also went on ahead and called hematology (instead of waiting for them to call me) and got an appointment for Harlie for next Friday. 

On Saturday, we didn't have a nurse for Harlie. By her 9pm meds, I was really tired. And this isn't I need a good night's sleep tired - although that is true, too! It is a tired that goes deeper than that. It is hard to explain what it feels like to be pushed in every way - physically, mentally, emotionally. Anyway, I went into the cabinet to do her 9pm meds and all of a sudden I saw a bottle of meds that shouldn't have been there. I realized then that I had made a mistake - twice! - earlier that day. I gave Harlie the wrong medicine!

I thought I was giving her E, but instead, I gave her O. E helps her body process food, and O makes it slow down. E is a white medication and is in an entirely different bottle with a different cap and all. O is a red medication and the bottle is smaller. 

My only saving grace was that the dose for E is half of the dose of O. So, at least I didn't overdose a medication (I gave her half instead). But, I certainly didn't help her body process food. And, really, I was SO upset at myself. Really, you have no idea how much I beat myself up over this. How could I miss all the red flags that I had the wrong bottle?! How did it even get in my hand to begin with? I was talking to a nurse friend of mine and told her that if I worked at a hospital and did that, I would be fired. She said, yes, but you would never be allowed to work this many hours, either, and this is exactly why. This just proves why it is so important to have breaks and clearly, I need a few. 

On Sunday, May 2nd, Tom and I went for a hike. We did this trail called Fortune's Cove in Lovingston, VA. It was about five miles. It was the first time Tom and I have been away from Harlie since before her surgery. And, to be honest, we needed it. The past few weeks have been really hard. And the way Tom and I get through the hard stuff is by taking breaks and laughing. But, there have been so few breaks and this has been a really long stretch of having our sleep interrupted. And my constant worrying about Harlie is a total energy drag. So, I was a little worried that I wouldn't be able to power through a somewhat difficult hike. But, I did. And it was really good for me, and for us. After we were done we stopped at one of our favorite breweries in Charlottesville and got some food and drinks. It was great to just sit down and enjoy the outside together. 

On Monday, May 3rd, I went to work for the first time in three weeks. I was a little worried I didn't have the brain power for work. But, I think the medicine mistake over the weekend might have been a sign I need to work a different part of my brain. This also proves that work is easier than my home life. I have been joking about that for years. Now it is proven. Haha! 

I had to chuckle at my work. When I left before Harlie's surgery, I changed my email auto reply and said that I would be out for about a week and a half. When that didn't happen, I asked them to change my auto reply. Since none of us had any idea when I would return, my co-worker put "I will be out of the office for the foreseeable future. I will get back to you as soon as I can after I return." Haha! Those poor people who were asking stuff from me had no idea what to do with that. Luckily, I don't really do anything too time sensitive.  

On Tuesday night, May 4th, Harlie was really complaining of pain behind her right ear. Her nurse had already given her Tylenol and it wasn't helping her at all. I had to give her the stronger pain meds, which I had been able to put away for the last several days. I also thought that her right ear and the surrounding area looked more red than usual.  

It was 9:30pm. Based on Harlie's prior infection history (there's been a lot) I got pretty nervous. So, I sent a text to Dr. Strauss. He answered immediately. I told him what I thought, and he said he could see her the next morning at his office between 9-11am or he could stop at our house on his way home that evening. I really felt like it couldn't wait. Time is critical when it comes to infections - especially when there's metal in a surgical site. The next morning, Cooper had a 9am appointment and I was supposed to take my Mom to the hospital for her spinal fusion surgery at 11am. 

I really wanted to do all of it. I hate not being reliable to my Mom or my siblings. I hate not being able to do what my boys need. But, clearly, I HAD to take Harlie. So, I asked a friend to take Cooper to his appointment for me and I took Harlie at 9am, thinking I would be done and back in time to drop her off at home and then go get my Mom. 

Anyway, I took Harlie to see Dr. Strauss and he agreed that she needed to go back on antibiotics. He also stuck a pocket of blood that had developed, so he could send some blood away for culture. She's had three different pockets develop since she got home and two have come open on their own, leaking blood. I can't believe we are still dealing with this blood! 

I called my sister and gave her an update and she said she would take Mom for me. I got Harlie home and settled, and then I went to work for the afternoon. 

On Thursday, May 6th, Cooper had his first track meet. Well, his first was actually on Tuesday, but it got rained out before he could run his event. Anyway, Cooper did great. He had to run against 8th graders, so he was definitely the smallest kid in his event. But, he looked great running and he was giving it his all, so that's awesome. 

On Friday, Murphy had a doctor's appointment at 8:15am and Harlie had her hematology appointment at 11am.  So, it was a busy morning. 

As far as hematology goes, I'll quote the doctor, "It is complicated." Her numbers are confusing. She did say that there is a test she wants to run for something that they have recently found in kids with VACTERAL (which is one of Harlie's things). They found it in the last five years.  I'm not even going to talk/think about it until the test comes back. There is no point in me learning about this particular blood disorder if she doesn't have it. So, when I find out, I'll let you know. 

They got more labs and unfortunately, had to stick her twice. Ugh, her arms are so bruised and it was more difficult for them to find a good vein. The hematologist said she will have to come back on a Tuesday to do more labs and run more tests. Fridays are not good hematology days - they can't send off certain tests on Fridays. Apparently the scheduler didn't know that. Awesome. So, we'll go back on a Tuesday sometime in the near future. 

Also, side note, earlier that morning, Dr. Strauss sent me a text asking me how Harlie was doing. I told him there appeared to be no improvement since staring the antibiotics. I told him that we had hematology at the Children's Pavilion that morning and he said he would walk over and take a look at her. So, he did. He agreed that it looked no better, but it also didn't look worse, which is good. I was able to explain to him that based on my prior experience with her crazy post-op infections, I'm nervous. There was/is one particular memory which has been worrying me. 

I told him that years and years ago, when she had her post-op infection from her spinal fusion surgery and had to go into the OR at like 11pm (unplanned, obviously) the surgeon came out and said something like, thank goodness the infection didn't get to her hardware (screws) in her spine, because I would have had to take them out. 

Well, there's hardware in her jaw. What if the infection has gotten to the hardware there? So, I asked him if the same thought applies to her jaw. And he said, yes. So, we talked about a plan.

First, he put her on antibiotics and we hope that does the trick. 

IF it does not, then her wound will have to be opened and drained/cultured. The question then is where should that happen? Here in Richmond, or in Boston? He said he would feel comfortable doing it here and reporting to her surgeon in Boston. They have been in constant communication so far about what's been happening with Harlie. He said he would get infectious disease on board, and she would get a PICC line and go on IV antibiotics. 

IF the infection threatens her jaw/hardware, we would have to go to Boston, since her surgeon knows exactly how he installed her hardware. 

So, we have a plan. And I hope that we won't need it. The thought of opening her up again, and/or removing the hardware, well, I can't even allow myself to think about it. Two of her infections that resulted going back into the OR were close calls. In one case she went into cardiac arrest in the OR, so I'm not kidding here. And right now (and for the past few weeks), I can't stop thinking about those experiences. 

All I have to say is I am so incredibly grateful for Dr. Strauss. I can't imagine going through this without him to look at her and make me feel better. Just knowing that we are not relying on my eyes/knowledge only is a life changer. What a gift to have him cross paths with Tom at the right time. If you don't remember, Tom did his kitchen renovation.

Sunday, May 9th was Mother's Day and it was my Mom's birthday.  And she got to go home from the hospital after her spinal fusion on Wednesday. Hopefully her recovery from here on out will be good to her. 

I'm going to stop there for now.  Since I haven't shared a photo of Harlie recently, I'll share this one from May 3rd. 

In this photo she is trying to smile. So, you can see that she can't move the right side of her face.  Did I already talk about that?  Shoot, I can't remember. Okay, I'll tell you this real quick, and then I have to go.  When we realized that she couldn't move her face much I kind of panicked. I was afraid that we just sacrificed her smile for a potential better airway. And I wasn't happy about that. I mean, how could that be a choice? What is more important? Ugh. 

Anyway, I asked both surgeons about that and they said that the nerves are likely just bruised and it could take weeks or months for them to heal and come back. Thank God.

Okay, I will write more soon. I have a lot more to tell you about. I really wish I could write more often so my posts could be shorter. As always, thanks for reading and for caring about our sweet girl!

Much love,

Christy xo

Post-Op Day 10, Feels like Day 20

I started this post on Saturday, April 24, but while writing, we were told we could take her home, so I closed my laptop and haven't been able to get back to it.  So, here's what I wrote then and I'll write an update soon....

Seriously, are we only on POD 10?! Definitely feels like Boston was longer ago than that!  

Anyway, today is actually Day 11 (Saturday), but this is Day 10's update (Friday). Yesterday a music therapist came to visit. She works here, but also volunteers for Jacob's Chance and she knows Harlie from that organization. 

Harlie loved it (even though her expression can't show it yet) and was the most playful she's been since surgery. 

Harlie was watching the show The Loud House and the episode was about selfies. Clearly, neither one of us have been in the mood for selfies lately. But, I was feeling not as afraid as I was before and honestly, that was a welcome relief. Plus, Harlie's spirit started to show a bit, so I was feeling pretty happy about that. 

Dr. Strauss took her into the OR in the afternoon.  She had many dressing changes on Thursday.  Sometimes they were three hours apart, sometimes two hours apart.  But, it seemed to stabilize for the longest stretch with a dressing change at 9pm on Thursday and then not again until she went into the OR on Friday afternoon.  Dr. Strauss cleaned her all up, removed the sutures (went from ear to ear under her chin and then in front of each ear). And he put a suture in the neck drain site. He put Dermabond on all the incisions and a dressing. 

They gave her plasma in the OR.  I haven't been able to tell you about the hematology conversations I've had. Honestly, my sleep has been interrupted so many times, I'm running on empty and just haven't had the energy for it. Basically, some of her labs have come back confusing (clotting factors, vitamin K deficient, antibody something or other, mixing study, etc.). While I understood what she was saying when she said it to me, there is no way I could explain it to you. And, in the end, nothing she said was too alarming or sounded very serious, so that's really all I care about. They took more labs right before she went into the OR, then they gave her plasma in the OR, then they took more labs after the OR.  All of those labs take days for results to come back. So, we aren't solving anything this particular stay.  Will likely continue to investigate as out patient. Yay. More specialists. 

Anyway, this is how she looked after the OR.  I definitely can see Harlie coming back and we are thrilled!

Also, Dr. Strauss said she is over the hump - and our trajectory is now pointing in the right direction. That is always such a relief! 

Oh, a few negatives I forgot to tell you about - she has not been tolerating her feedings. Really, she hasn't been right in that department since her surgery on the 13th. That is pretty odd for her, for sure. And since she's been on some pretty heavy antibiotics, her GI system is suffering. Poor girl keeps signing that she's sorry. Oh, break my heart. I keep telling her that she doesn't need to be sorry.  I am the one that's sorry! But, at the end of the day, she is 14 and she has been pretty embarrassed and uncomfortable. The worst is during the night. That is what has been causing my lack of sleep (and hers, obviously). Having to wake up to get her up and to the bathroom, then clean her up, change whatever linens need to be changed, etc. takes time and it has been like 3-4 times per night. I am up and busy just long enough to really wake up and then it takes time to fall back asleep. I'll sleep more later. But, for now, I'd love some relief for her, because she is miserable. 

I also forgot to tell you about Thursday afternoon. I don't know what the heck I DID tell you about Thursday, haha! 

I heard that Harlie's pediatrician from years ago (Dr. Keith Derco) was going to come visit. He retired from that practice a few years ago and we have really missed him. He came to visit us at Children's National back in 2018 when she was in the hospital for two months (February - April) after her LTR surgery. We have stayed in touch because he has been a huge advocate for building a stand alone children's hospital in Richmond. And he has been working with the CEO of Children's Hospital of Richmond (Elias Neujahr) in making this happen.  Over the past few years, Keith has invited me to several meetings with Elias (along with other lifer or seasoned moms) to discuss a new hospital. And that project is coming along nicely and is currently being built right across from the hospital here. The new stand alone children's hospital is scheduled to open for business in two years.  Pretty exciting!

Anyway, so Keith came in followed by Elias Neujahr! What a nice surprise!  Like for real! How special do I feel that we had a visit from them?! Elias said a lot of complimentary things to me, which was super nice. He is a very kind hearted person. I am so, so upset with myself that I missed an opportunity to take a picture of them with Harlie.  But, Elias did ask me what they could do for me and I told him what would make my life a bit better and he did it!  

I was able to have Brandy relieve me at the hospital for a few hours on Thursday night.  I cannot leave Harlie alone on the floor at VCU.  I wanted to go home and shower and re-pack my bag. Plus, Harlie needed more stuff.  Anyway, on the way home I totally missed my exit! I never miss that exit.  I knew I was super tired when it took longer than it should've for me to right myself and then take the long way home.  Ugh.  

We are waiting to talk to hematology.  She's been cleared by all her other docs for discharge.  If hematology says they are comfortable for us to take her home, then we will.  

It is now May 3rd.  And we have been so busy since we left the hospital. I will update soon, but for now, yes, hematology came in the afternoon and said we could just be followed out patient.  So, we went home.  I noticed as we were leaving that there was a spot of blood on one of her bandages.  So, clearly the bleeding had restarted.  

Harlie HATES getting the IVs taken out.  I guess she hates all the tape that keeps it in place.  Because removing the actual IV isn't painful. Some things are way more anxiety-based than others, I suppose. 

She was home and in the chair for two seconds before Mabel jumped up to hang out with her.  

As always, thank you so much for all the love and support!  

Much love,

Christy xo