Left TMJ Surgery in Boston

Hi! Well, Harlie had her TMJ removal surgery today (Tuesday). To be honest, I'm struggling to get this post started. I'm just feeling so tired of it all. 

Preop Day (Monday)

We flew up on the first flight on Monday. We had to leave the house at 4am. I, of course, woke up at 2:15am thinking of all the stuff I had to do that I didn't want to do. Like go to the airport and fly to Boston. Anyway, the flight was fine. 

We arrived in Boston and took an Uber to our hotel (which isn't really a hotel). It is awesome because they are apartments that are rented for patients of Boston Children's Hospital. It is kinda like a Ronald McDonald house (which they do not have here). They opened after our last stay here, so it is new to us. It is way more affordable than a hotel or AirBnB. So, we went there first to drop off our luggage. Then we ubered to a breakfast place close to our first appointment. After many hurdles, her appointment with the oculoplastic surgeon was approved and coordinated with her other preop appointments. That was a logisitical nightmare. But, luckily, everyone wanted to help us make it work and they got it done. Whew! I'm so thankful for that! Anyway, we had to see this doctor at their Weymouth location (about a 40 minute drive) because that's where she was that day. 

We added this appointment because she saw her ophthalmologist back in November and she felt that her corneal scarring was getting worse. Her scarring probably happened back in 2018 when she was in a medically induced coma for 20+ days. She cannot fully close her left eye, so dust can get in there and while she was out - they were trying to tape her eyes shut. So, if there was something in her eye, it couldn't even come out because of the tape. Anyway, it also is probably dry most of the time, since even blinking doesn't shut her eye all the way. So, her doc just thought maybe it is time to see a surgeon to see if there was anything they could do surgically to help her close her eye more. It seems like so many oculoplastic surgeons work at surgical centers. They aren't going to put Harlie under anesthesia at a surgical center. So, I just thought that since we have to go to Boston twice anyway (phase 1 in May, phase 2 in October) if we had a consultation in May, and they determined that they could help her - maybe we could coordinate eye surgery with phase 2 in October. So, that is why this consultation had to happen or the whole possibility would be lost. 

As far as how that appointment went, the doctor took a bunch of pictures and did a bunch of eye tests and she said she wants to do some research and talk to her colleagues before giving us an answer. I told her that if she felt like they could not improve her situation, that is fine. I am not pushing for this thing unless it truly could help her. So, we'll see what she says.

After that appointment, we ubered back to Boston Children's hospital, main location. At this point it was 1:10pm and we had about 7 minutes to eat lunch. So we grabbed a salad in the hospital cafeteria, ate it really fast and then went up for her preop appointments. 

We covered her history, meds, etc. and they sent in anesthesia. When she came in she said she had some bad news. She said that legal had an issue since she is 18. I guess they concluded that she is not a typical 18 year old so they had an issue with us helping her? I don't really undertsand it. I mean I've gone with Murphy to appointments when he was over 18 and no one said a thing. I took Harlie to her pacemaker appointment two weeks ago and the lady checking us in had to ask someone else if they could still see her. I mean, just ask her if she wants me in there with her. 

Anyway, they basically said that surgery might have to be cancelled. I mean, she has an active infection in her jaw - so this possibility was terrifying to us. Not to mention the cost and time we had invested. Anyway, after they left to go and get social work and talk amongst the legal team - it occurred to me that we did her power of attorney and medical directive a few months ago at the firm where I work part-time. I completely forgot about that! Anyway, I called my sister and asked her to look in my computer at work to see if I scanned in the signed copies. Which, I did not. Darn it. So, then we called my neighbor to see if she was working from home, which she was, thank God. So, she dropped everything and went to our house and she found the documents in our office. Then she scanned them to us. Hallelujah! Thank you, Lindsay! Tom emailed them to the nurse and we waited. 

It is during situations like this where my brain goes crazy (PTSD?) and it is awful. Not to mention that I feel like I am being lit on fire when it appears that some stranger is standing in the way of Harlie getting the medical care she needs. OMG. So, I started to think of every horrible thing that could happen. Like, for example, YEARS ago while we were in the hospital here, there was a case happening where Boston Children's Hospital took parental rights away from the parents of a patient. They brought her here from out of state for a chronic issue because they couldn't figure out what was happening. I guess they feared that the parents were part of the problem. I have no idea how that ended. Anyway, that entered my mind, as if that was a possiblity! I was afraid that they wouldn't honor the document. I don't even know if that is possible. But, I was truly terrified they would question it and say it didn't matter. 

We are working on her guardianship, but trust me when I say this has not been easy. In fact, we just got her psychological evaluation report that very day! I think that is the last piece of information we need to file it legally. 

Anyway, I was trying to stay calm and tell myself that it will be okay if they cancel it. I said to myself, I didn't want to do this to her anyway, so we will just leave and go home and hope that her infection doesn't hurt her before we can get this guardianship and come back. Or maybe even go somewhere else. I'm telling you - I looked totally calm, but inside I was spinning out of control!

Then the social worker came in and said legal said her medical directive was what they needed and all is a go. I literally had to hold back the tears. I was so relieved.  The documents are now saved in my phone, which is where they should have been. Ugh. My brain just doesn't work like it used to. I'm just getting too old and tired for this kind of stress. We are 18+ years into fighting for her life and I am running on empty. 

After that she had to give some blood for labs, the anesthesiologist came back and we did our thing (more history, questions, meds, etc.) and then we were DONE. 

We left the hospital close to 5pm, I think. Been up since 2:15am. So, we walked the mile or so towards our apartment and stopped at REI (Harlie calls it the camping store) to let her look around. Then Tom and I got a drink and we sat outside for some fresh air and relaxation. 

Tom ordered me the Murphy's Law, which was an Irish Whiskey with cucumber and mint. Since Murphy turned 21 on the 11th (the day before) that seemed like a good choice. 🙂

We went to Target (which is right across the street from our apartment) and got some essentials (coffee), went and got dinner from a greek place and then ate in the apartment. It is a cute, tiny one bedroom apartment. Perfectly fine for our needs and priced great at $75 per night. 

We were all so exhausted and we had to get up at 4:30am! We had to have her at the hospital at 6am and we had to walk there.

Surgery Day (Tuesday)

They took us back to preop quickly. They had told us that they wanted to start an IV in preop. Harlie hates that. So, we talked about it beforehand so she wouldn't be blindsided. She likes to be informed in advance of all things. Haha! I told her I would only let them try once or twice. If they couldn't get it in one or two sticks - they would have to stop, so she agreed to that. They didn't get it in one stick and the nurse said she wouldn't even try a second time. Harlie was glad about that. 

I am so used to answering all the questions for Harlie. But I made an effort to ask her if she wanted to answer or if she wanted me to answer. She wanted me to answer all the medical stuff. She answered all the personal stuff.

All the docs came in to ask all their questions and ask us if we had any questions. We never have any questions. It always cracks me up when the anesthesiologist asks me if I have any questions. Like what would I possibly ask her? You know what you're doing? Great. Go do it well. 

They took her back around 7:30am. We went and got some breakfast and then headed to the waiting room to wait. This is what I posted on Facebook:

Tom made this little image of me and added it in the comments.

It so perfectly depicts how I'm feeling right now! Haha! Love it. I feel seen! Haha!

Anyway, while we waited, Tom put the movie Nonnas on his tablet for us to watch. It has Vince Vaughn in it, it is on Netflix. The movie starts with a funeral. 😑 

Folks, I'm hanging on by a thread over here. So, the slightest thing that could be interpreted as sad, and there was no chance I could hold the tears back. I basically sat there and cried for the first 15 minutes. In fact, I told Tom to just turn it off. But, he said, "I think it gets better." Haha! He went and got me some tissues, actually it was a bunch of toilet paper because he said he couldn't find any tissues. What the actual heck? A children's hospital (affliated with Harvard medical, which has to have plenty of money) waiting room with not one freaking box of cheap ass tissues? Unbelievable. So, I sat there with my wad of toilet paper crying over some stupid movie that wasn't even sad!! I'm telling you, my life is way harder than I make it look. 

Luckily, I was done crying by the time her surgeon came to talk to us. He said there were no surprises and all went as planned. He said the infection was there, but wasn't horrible. Either way, we had no choice but to do this - we were never going to beat that infection. He asked us for permission to test Harlie's blood. One of the plastic surgery fellows poked himself with a needle during her surgery. I asked him if they made fun of him and he said yes. Haha.

They admitted her to the CICU and when they got her all settled, we were able to go see her. One example of why hospitalizations are so exhausting is the repetition of information - we asked her surgeon what after care she should have. He said ice is the best thing we can do to help reduce the swelling. I asked him if he put that in the orders so the nurses in the CICU would know to do it, since the CICU doesn't normally get plastic surgery patients. He said yes, they are in there. So, we get to her room and there's no ice. So, I ask the nurse about the ice and she said there were no notes about ice. I don't know why that happens - but it does. You always have to be on top of everything. You can't assume anyone knows anything. It really gets exhausting. Anyway, she got her ice and a sleeve thing. She slept pretty good and her nurse said she only had her so she would be right with her - so we should go eat lunch. 

We left the hospital and walked to a restaurant a few blocks away. It was a beautiful day.  Harlie woke up when we got back. Oh, forgot to mention that her surgeon also re-pierced her left ear while he was in there. I don't know if you'll remember that when we went to see Taylor Swift a couple of years ago, Harlie's left ear lobe split. So weird. During her surgery to replace the right TMJ back in 2023, he repaired that ear lobe. So, since he was in there, Harlie wanted him to pierce it again. 

We stayed in her room until her night nurse came on. She said she only had Harlie for the night and would be right with her. Harlie was pretty tired and slept most of the time. So, we left and headed to the hotel. After putting our stuff down, we went up to the top floor of the building to check out the view. There's a little patio up there for the residents, which is pretty cool. That's Fenway behind us. 

Then we walked to a restaurant just a few doors down for dinner. Tom's mom got us an e-card for dinner there, so that was really nice. Thanks, Mary Ann!

Post-Op Day 1

Harlie's nurse said she slept all night, which is good. When we got to her room, we got her all cleaned up - I brushed her hair and braided it, changed her trach ties, got her ear all cleaned up (her incision had drained all over her freshly pierced ear) put her in fresh pjs and changed her bedding. 

She was a little upset and frustrated at her life and cried a little. Ugh, she breaks my heart. She told me that she gave her phone number to a girl in her class. I was very surprised. She checked her phone to see if her friend had messaged her and she had not. I have no idea of what her friend is capable of doing or if she even knows that Harlie had surgery. I can't imagine having a surgery like this and not hearing from my friends. It just breaks my heart that Harlie doesn't have that kind of friendship. She must feel so lonely sometimes. 

Her nurse said that if she could get a CT scan today, they would discharge her if we were ready for that. We felt like she was doing really well. Then her nurse said that CT called and said they were ready for her. Wow. So, Tom looked at flights and the next flight out is for 9pm tonight. They rounded on her right after she returned from the CT scan and told Tom to book our flights. I loved the attending doc. They ordered her meds and gave me everything I would need for the trip home. This is definitely the shortest post-op stay she's ever had. We loaded up and left. For the first time ever (been coming here since 2012, I think) we used the free shuttle from the hospital to our apartment/room. I just didn't want her to have to sit in her chair and be bounced around. Seemed like that would be painful.  

We are now in our apartment/room and Harlie is napping and we are pretty much packed and ready to go. 

Hopefully, all will go well with the airport and flight and we'll be sleeping in our beds by midnight. Thank you for reading and commenting and loving us. 

Much love,

Christy xo

Harlie Update, Way Past Due

Hi! After long periods of time of not sharing our life with you, it feels a bit scary to start sharing again. So, I'm just going to jump in. (I say that, but I started this post two weeks ago and it has been so hard to finish it! But, I'm gonna do it...)

Harlie returned to school (9th grade) in the fall of 2022.

First day of 9th grade.

Cooper's first day of 8th grade. 

This is the first time she's been in person, full-time since her 3rd grade year. Kinda nuts. She didn't attend one day of her 4th grade year and was on a hybrid of in person/homebound from 5th grade through 8th grade. When her new team met at the high school in the summer to talk about what her return would look like, we talked about starting with half days or something like that. I figured that with all the different classes, it would be easier to jump right in and then scale back if needed. And she did great! She is thrilled to go to school every day, all day. She gets ready every morning and anxiously waits for the school bus to come get her. The negative here is that the bus doesn't come get her until after the late bell rings at school. So, she has been late to school EVERY SINGLE DAY. Plus, we have a 15-minute range of when the bus is coming. Is that even normal? Does every kid standing at a bus stop have a 15-minute window of when the bus is coming? Our kids have walked to school - never taken a bus, so I don't know what's normal. At any rate, she is eager and determined to learn and is making so much progress in her reading skills! Her social skills are getting better, too. Here are some highlights so far...

Harlie turned 16 in September!

We went bowling to celebrate.

She went to the Homecoming dance.

We went to Pugoween (so many pugs in costume!)
and we finally put some effort into her costume.

It paid off! She won 1st place in the Group Costume category.

 

Her 9th grade school photo.

She got a prosthetic ear! It is the one on the left.
She can finally wear her hair down since she can tuck her hair behind that ear now.

She was in the One Act at school - with a speaking line!

She played in the All Star Basketball program,
which she LOVED.

Look at how tiny she is compared to her peers!

As you can see, she has been very busy in school! Going to watch her basketball games was pretty moving. For the first game, I spent the whole game trying not to cry. Okay, fine. I cried for the first 10 minutes, at least. There were just so many emotions all at once. I was sad she was out there, I was grateful she was out there. Then I felt that for all the kids and all their parents. Then I thought man, people are so lucky to be born well. Do people realize that? You can also see that the kids on the court aren't embarrassed or self conscious. They are out there enjoying themselves. They just seem so grateful to be there. I think we could all stand to learn something from them.  

So, overall, things are going well. We've had some nursing issues. This comes with the territory, I know. However, knowing doesn't make it any easier, of course. It is not easy to open up your home, your family and your hearts to other people. Considering Harlie requires a nurse to go with her to school, it is pretty imperative that the nurse be someone we can count on day after day. That nurse is her ticket to her education. Because of that, we found that a nurse provided by the county is the more reliable way to go. She has the same nurse each day and she rides the bus with Harlie to and from school. If she cannot go to school with Harlie, they will try and get a substitute. That is impossible in the home health nursing world. So far, they have been able to get a sub all but one time. So, that's great. We still have Caylee from time to time, but she does have her own career. We are lucky that she still wants to spend her free time with us, though. I've adjusted my work schedule to allow me to focus on getting Harlie ready for school. She still needs help bathing and washing/drying her hair. 

(As I mentioned earlier, I started this post two weeks ago. Right after I started it, her school nurse gave notice and left to accept a job elsewhere. Ahhh, it is so hard when she gets attached, and then they leave. We are back to substitutes for now.)

Anyway, we are without a full-time nurse for the first time in a really long time. I have to think that this means we are getting somewhere. Hopefully somewhere good. Harlie is 16 years old now. And she wants to live a more normal life. Her ultimate goal is to be able to go to school without a nurse at all. I know she can get there. But, it is really terrifying to think of her being in that big high school without someone looking out for her all day. But, just like with all things that Harlie is determined to achieve, we will figure it out. What she wants, is what I want. 

As far as how she's doing medically, well, that's another story - and honestly, the real reason I finally sat down to write again. 

In order to tell you, I have to go back a bit. Here's a summary...

April 13, 2021, Harlie had surgery at Boston Children's Hospital to implant prosthetic, titanium temporomandibular joints (TMJs).

April 18, 2021, Harlie was discharged (her tablet was stolen from her bed while she slept) and we drove home.

To write this post, I had to go back and refresh my memory on this time almost two years ago. Ugh. I don't know how we lived through this. And I don't know how we're going to do it again. MFer.  

April 21, 2021, After we got home, she just didn't stop bleeding from her incisions. It was a nightmare. She was readmitted to the hospital just a few days after being discharged from BCH.  She really should've been admitted sooner, honestly. I pushed it, hoping for it to stop on it's own. 

From May to August, some kind of growths appeared at both incisions (one on each side near her ears). We saw several different docs, but no one really knew what they were. They were not filled with fluid, even though they kind of looked like large blisters. I finally sent some pics to her ENT in DC and he said he needed to see her in person. So, we went to DC and he said they were abscesses from an infection. Either the constant bleeding a few months back allowed an infection in, or the infection was already there from the OR. I know everything is supposed to be sterile and all in ORs, but it would not be the first time she came out of an OR with an infection. Anyway, her ENT brought in an infectious disease doc (ID) and she is great. Our goal is to save her prosthetic TMJs and she was very supportive of that goal. 

We scheduled a time for Harlie to go into the OR and he removed the growths. They cultured the tissue and it came back with staph. They put in a PICC line and put her on IV meds for two weeks. But, soon after, the growths started growing back. Her ID doc put her on Doxycycline through her g-tube and she's been on it ever since. Her ID doc explained it to me something like this - the staph is sticking to the titanium TMJs. The staph knows that we are trying to kill it with antibiotics, so it forms a protective film/barrier over itself. The low dose of Doxy will hopefully eventually break down the protective layer and then get to the staph to kill it. 

Things settled down for a bit. We attempted to take her off the Doxy twice, but each time it looked like something was brewing. The second time was in June 2022. So, her doc said we should just keep her on it for another year. 

In November, 2022, a growth started growing back on the right side only, despite still being on Doxy. So the Doxy killed the bacteria on the left, but not on the right, I guess. In January, 2023, her ENT had to remove the growth. Within two weeks, I could see it was already growing back. This means that the Doxy isn't doing much, if anything at all. This is not good. After working with her ENT and ID for almost two years, they said we have exhausted all treatment options and it is time to speak to her surgeon in Boston. That TMJ has to come out. 

This is devastating. There is nothing good about this. There is no positive way of looking at it. I consider myself a pro at finding the positive view and there simply isn't one. This is only going backwards. This is re-doing an absolutely AWFUL surgery that isn't designed to be re-done. This is probably the first time we've gone into a surgery without having hope that she will come out better than she went in. Well, I guess that's not totally true. We hope that the infection will go away for good. I have to clean this infection area very often, and it hurts her. But, her function won't improve. Heck, her function could suffer for all I know. 

Here's what must be done: The surgeon has to remove her right TMJ and put in a temporary spacer. We take her home and let her heal. We have to make sure the infection is gone. I suppose they will make a new TMJ during this healing time. I don't really know. Then we return some months later and they will remove the spacer and put the new TMJ in. Did you see the pics of her getting her last TMJ? I don't know how we are going to do this again!!! And there's no guarantee that this all won't happen again! I can't even.

I don't know if I ever blogged about it, but that summer (2021) she ended up having to see a hematologist about her bleeding issue. She has some kind of platelet disorder. I don't remember exactly what. So, now, we need to consider that before going into this surgery. And we need to figure out a way for her to have her tablet and secure it when she is sleeping in the hospital. I can't believe this is something we have to worry about. 

Surgery is Monday, March 27. She will need lots of pre-op appointments, so we will have to go up sometime the week before. 

Tom's work schedule is booked. He has big projects starting, going, prepping, et cetera leaving no windows for time off. But he knows I cannot get Harlie to Boston alone. I don't know what he's going to do but I know he will figure something out. We managed to get my favorite Airbnb, so that's good. I do like knowing where we will stay - the layout, what we need to bring, how I'll walk to the hospital, stuff like that. This place is really comfortable - small but not too small and familiar, in a good way.  

I wrote most of the above two weeks ago, when we found out her surgery date. I've had a hard time getting back to this post to finish it. Since I started it, we got our pre-op appointments scheduled for the Friday, March 24. So, we will go up on Thursday. Luckily, that gives Tom a few days to get his project underway so he can be gone for a bit. 

I'm totally dreading this surgery. A few people have asked me if she'll be okay. I guess since I'm sharing anyway, I'll tell you the ugly truth. I always worry if she'll be okay. I never go into a surgery thinking it is no big deal. Never. I just try to hide my worry from everyone. No one wants to talk about that kind of worry anyway. 

On a lighter, more positive note.. Harlie is going to summer camp! YAY!

You might remember that our boys have been going to summer camp - Winona Camps for Boys in Maine for about six or so years. Well, Murphy aged out now. But, Cooper still goes. Every summer, Harlie has watched them go and wished she could go, too. I think she thinks that WE don't want her to go. But, that is so NOT the case! We'd love for her to be able to go! I've tried to get her into several special needs based camps - but the trach has always been a deal breaker. But, this camp is only for kiddos with trachs! 

I found out about Champ Camp from a fellow trach mom/family. Her daughter went to camp and graduated as a camper this past year. It looks amazing. So, I applied in January and had a phone interview. We talked over some things. I totally get that Harlie is a lot. I'm not blind to that. But, I also know that she manages it so well, really. Plus, I have the full support of the docs that know her best. We then had a zoom interview with different people and I completed a bunch of paperwork. We got official word last week that she was accepted! Hallelujah! 

The camp is in Indiana in June. Oh, what an adventure for Harlie! We are so excited for her! Hopefully, this surgery will go fine and she will heal up and be ready by June. That's the plan anyway. 

Okay, I'm just going to end this here. I'll blog more during her hospitalization. 

Thanks for all the 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

In Boston

It's Sunday night, and we are in the hotel in Boston.  We had a very lazy day today. And that was actually really nice.  You can't really have lazy days at home when you are surrounded by all the things that you have to do, eventually.  But, here, there's NOTHING for me to do!  Woohoo!

We left Richmond last night.  I started packing on Friday.  And then spent ALL day Saturday packing.  The thing is that when you pack medical supplies and equipment, if something gets broken, you can't just go to CVS to pick up a new one.  So, you have to pack more than one of something if you can't live without it. And now we've added The Vest to our stuff.  Tom was not happy about it since it is another heavy piece of luggage (that you can't check because it's a machine that costs $16,000).  But, I really think we are going to be thankful to have it.  Already it has helped her secretions.  After Saturday night sleeping without her normal humidification, her secretions were already thicker and stickier.  But, after a few vest treatments combined with breathing treatments, they've already turned around.

Anyway, here's the final result...

Holy luggage!  That's for three people, budgeting for a one week's stay.  And keep in mind that I budgeted that Harlie will not be needing anything from us (since she'll be in the hospital) for a couple of days.  My Mom and Dad came to our house and rode with us to the airport so they could take our car back home for us.  That will save us loads of money in parking.  Thank you Mom and Dad!

Soon after we arrived at the airport we heard from our friend, Carol, that her husband, Chris, was on our same flight to Boston.  What luck!  We had time for one beer and a lot of laughs before we had to board the plane.

Harlie took this photo...

Please keep Chris and his family in your thoughts and prayers as his mom (who lives in Boston and is fighting cancer) isn't doing well.  You might remember that Chris came to see us when we were at Boston Children's this summer.  We had to laugh that we were all flying to Boston, and all for not fun reasons.

Once we landed in Boston, Chris got us an Uber.  It's kind of like a taxi, but you order it from your phone and the cars are really nice.  I'm not sure if he specifically asked for a Suburban for us or not, but it was fitting considering all our luggage!  I tried to take a photo of Tom and Chris pushing all our luggage through the airport, but it was too blurry.  I don't know what we would have done without Chris!  Thank you for the Uber and the help, Chris!

By the time we got to the hotel and unpacked and settled in, it was late.  Harlie went to sleep and we stayed up and watched the baseball game.  Go Boston!  Hey, when in Rome!

This morning (Sunday) we slept in.  All three of us.  In fact, Harlie slept past 11 o'clock!  Seriously, what seven year old sleeps past 11am?  But we let her.  We're counting it as vacation.  As I was trying to wake Harlie (I figured 12 hours of sleep was enough, right?) I couldn't help but laugh at this...

Yes, we bring our own power strip with us.  You only have to forget that once.  Anyway, Harlie is so funny.  She is AWFUL to wake in the morning.  Seriously - mean and angry when I force her out of bed.  I send her straight to the potty.  And then she runs out with a smile, goofy and in a good mood.  She is something.  Here she is, just minutes out of bed, smiling, getting her first vest and breathing treatments of the day.

We were super lazy.  And enjoyed it.  But eventually we thought we should go somewhere and do something.  We thought about taking her to the movies to see Cloudy with a Chance of Meatballs 2.  But, after watching the trailer, and seeing how much food was involved, considering she doesn't eat any of it, I was afraid she just wouldn't get it.  I told Tom my thoughts and he said, "Now there's something you probably don't hear everyday."  I had her watch the trailer and then afterwards I said, "Harlie would you like to go see that?"  And she said, "No."  Okay, then.  That solves it.

So, we went to look for a place to eat lunch.  Maneuvering through the crowded sidewalks with her chair and the oxygen concentrator was a lot of work.  And all the restaurants looked crowded, too.  So, we went into Trader Joes and bought a few snacks (and a bottle of wine, of course) and then went to a deli for some take out sandwiches and headed back to the room for lunch.  But, the wall of the deli was screaming for some photos.

Then, later in the afternoon, Tom went to a Steelers bar that he found to watch the game.  They lost.  But he said he had fun anyway.  This is a very cool town.  Harlie and I hung out in the room, being lazy.  Enjoying our vacation.  Harlie found Tom's glasses...

She really cracks me up.

So, tomorrow we have to be at the hospital at 10 o'clock.  And we have appointments through 4 o'clock.  So, it will be a long day.  Then we'll have Tuesday off.  Not sure what we're going to do.  Might venture to the aquarium.  Since it's October, and it will be Tuesday, maybe it won't be crowded.  We'll ask Harlie and see what she says.  Then Wednesday is surgery day.  And hopefully we'll be home soon after!

That's it for today.  I will update again tomorrow night.

Thank you for all your thoughts and prayers this week!  We couldn't do this without you!

Much love,
Christy xo

Surgery Day

I wasn't able to blog yesterday (surgery day) so I'm going to write two posts today.  This one is for yesterday - July 3rd.

As I mentioned before, we were getting concerned that she was getting sick.  My gut was telling me she wasn't - that she was just adjusting to the drier air here (way less humidity than what she's used to at home).  But, I really couldn't be totally sure that it wasn't a touch of wishful thinking.  By Tuesday night, I was preparing myself for disappointment.  Not that I really want her to have this surgery.  But, I want the potential results - asap.  And there's no getting around this surgery anyway.  It is not elective.  It must be done.  So, let's just get it over with and possibly reap the rewards in a few months.   So, not getting it at this point would be a disappointment that would be difficult for me to get over.

She had an okay night.  Not a lot of suctioning.  But her oxygen saturation levels were all over the place.  And she was breathing rather hard for her.  My thought was that her body was having to work harder to maintain her sats, so she had to take more breaths per minute than typical.  She was not sick.  Hopefully.

Surgery was scheduled for 8:30, so we had to have her there at 7am.  Tom and I didn't talk much on the way there.  We were sad.  We got there and got her all checked in.  When they took us back to start the whole process of preparing her, there was a lot of discussion about how she was doing.  I told them what my thoughts were.  They listened to her lungs (clear!) and she had no fever.  Her sats were about 83 (which is kinda low for her).  But to be honest, I was pleasantly surprised they were that high.  Although low sats alone would not bother me pre-operatively.

I was not too confident in my opinion on what was going on with Harlie because I was afraid my desires were swaying my opinion.  So once anesthesia came to talk to us (and we went over everything again), they asked us how we felt about it.  I told them that I thought I was too vested emotionally, and financially in having this surgery today to be able to make the final call.  I wanted them to do it.  Luckily, they agreed with my thinking and said they felt comfortable with her having surgery.  YAY!  They said that if she were supposed to go home immediately after, no.  But, since she is going to the ICU, they can support her and give her IV antibiotics, etc.  Plus, she had the same anesthesiologist as last time, so he knew her.  Awesome!  So, it was a go!

Here Harlie is focusing on Spongebob on the iPad to get her through this.

I love that they don't make me change her clothes.  They said they could do it once she was under.  So it wasn't worth upsetting her.  Then they let me walk with her all the way into the OR and I stayed beside her until she went to sleep.  Poor kid.  I hope one day her and I will be able to have long talks about what she remembers and how she feels.

And here is the empty stroller we pushed around most of the day...

Surgery took about four hours.  Dr. Padwa came out and said that it went great.  No problems whatsoever. Just what a parent wants to hear!

Here she is about an hour post-op...

Hopefully the ice packs will help minimize the swelling.

And here she is already up and asking to watch TV.  If you look at the picture closely, you can see the metal  sticking out right under her ear.  That is what we will turn every day.  The metal is actually springy - so it's flexible.  Which has got to be more comfortable than a rod!

She slept a lot on and off, of course.  And she wouldn't pee.  She tried, but she just couldn't.  By about 9pm, they had to cath her since it had been since 6:30am since she had gone.  And that was after being loaded up with fluids in and out of the OR.

Tom and I went to dinner at a place we found last time and loved, Church.  Just a few minutes after sitting down, the manager came up to us and said, "Are you Tom and Christy, by chance?"  Then he said that dinner was on the Young family in Richmond.  Seriously?  Tom had "checked in" there on FB and BAM!  Sally was on it!  We are just overwhelmed.  All the time.   It was a wonderful dinner.  And we really enjoyed being able to sit down, relax, take a deep breath, and drink a couple glasses of wine.  So, thank you Sally and Glen!!!

After dinner we walked back to the hospital and hung out with Harlie for a little while.  At about 8:30, I asked her if she wanted to go night-night.  And she nodded her head and closed her eyes.  So we said good-night and gave her kisses and walked back to the hotel.  By that time, I was way too tired to write.  I have not gotten adequate sleep for the last four to five nights and I don't think I realized how truly tired I was.    This emotional up and down, changing gears kind of thing, can really wear you out!

Okay, so that was yesterday.  Now I will write about how she's doing today.  So, check back soon.

Oh wait! One more thing...

While we were in the waiting room, we were overwhelmed at the amount of support we were getting on Facebook!  So many pictures of people wearing their We Heart Harlie t-shirts!!  So many messages of love and support to read.  What a wonderful way to pass the time!  There's simply no way to ever tell you how much that means to us and how much it truly does help get us through the hard times.  So, thank you.

Much love,
Christy xoxo