Make-A-Wish and Family Photos

The time has come for Harlie's Make-A-Wish trip. Well, the planning part anyway. 

I really put off this whole MAW thing for years (obviously). Her social worker at CNMC had mentioned that she was going to put a referral in for Harlie many years ago (right after Harlie's near death experience in March of 2018). I didn't really want to think about it back then, so I never followed up. It also took Harlie about a year to fully recover from that hospitalization, so I couldn't think about MAW at that time. 

Anyway, it was the summer before she turned 17 that I saw a commercial that said that it is only for kids under 18. Realizing that she was going to lose her chance, I knew I couldn't put it off any longer. Just a few days after she turned 17 (in 2023), I wrote to one of her cardiologists about it. The approval came THAT AFTERNOON! Isn't that crazy? 

Then we had to do a zoom meeting with a MAW volunteer and let Harlie meet her and answer some questions. We had to figure out what Harlie's wish would be. So, we asked her, "Harlie, if you could have anything you wanted, what would it be?" She replied, "I'd like to make bracelets." Um, no. Think bigger. "I'd like to see Wild Kratts Live." Bigger! (We took her to see Wild Kratts Live in May 2024. The tickets were a Christmas present that year.)

So, we asked her if she could go anywhere, where would she like to go? She said "Japan!" Too big. Haha! She says she likes the architecture and flowers/trees in Japan - and the ninjas. Haha! Then she said, "I'd like to go on a safari, like you did." Yes, when I worked at Operation Smile many moons ago, I went to Kenya on a work trip and then went on some safaris with some work friends. That was such an amazing experience and man, do I wish we could give that to Harlie. But, still, too big. MAW doesn't do international trips anymore. So, after some thinking and researching, she decided she would like to go to Hawaii. 

There's been quite a few hoops to jump through. They had a hard time with us not wanting to take a nurse with us. We just aren't there anymore with nursing. We would have to start all over with a nursing agency and we don't have any interest in that. So, that took some effort. They eventually said we don't have to take one. Murphy is over 18, so that took some effort, too. Regardless, all was approved. 

They sent us a worksheet to help us figure out which island we wanted to go to and what we wanted to do while there. Based on what she wanted to see and do, we selected O'ahu (also it is the island with the hospital, haha). Then they gave us a window of travel and we had to pick good/bad times to travel. I selected Murphy's spring break first, since I knew it would be hard/detrimental for him to miss a whole week of his college courses. Then we just had to wait for our time to come. 

Now, it is almost Christmas 2024 and we just got our dates for travel - March 8-15th, Murphy's spring break. We got our first choice!

I'm already stressing about it. I know that this is what they do, and they will do an amazing job. But, at the end of the day, we have to travel, and traveling is not easy for me. There will be packing and medical stuff, oxygen and her chair and long flights. What if she gets sick right before? Or while we are there?! We are going to have to ship some of her medical stuff, and we are going to have to rent some stuff while there. We can't take her power chair on flights, so we'll have to rent a chair for her there. 

Also, I know MAW is an amazing organization and I am grateful that it exists. However, no one wants to qualify. Well, I guess I can't speak for other parents. So, we didn't want to qualify. There's a whole emotional thing that goes with the reality that your child is getting a wish granted. I would give anything for her to be a healthy 18 year old who is off to college or work or wherever she would have wanted to go. I'm guessing she would've wanted to go off to college because she loves learning and she loves her independence. And the girl has goals - a doctor for babies and a veterinarian! Man, I can't let myself think like that... Instead we are working on a legal guardianship for her and a MAW trip. 

So, this isn't going to be easy for me. Just thinking about it brings me to tears. There are just so many feelings. Sometimes there's a fight,  or a tug of war, rather, between the grief in me and the gratitude. Either way I come out crying. Unfortunately, in life, the good doesn't cancel out the bad. All the MAW trips in the world wouldn't change what is difficult or impossible to manage. And they wouldn't give us back what we've lost. I do try so hard to be grateful - but I'm learning that gratitude isn't the Tylenol for grief. I'm going to feel sad about what we've lost no matter what. 

But, at the end of the day, I want Harlie to see things and experience things and this is something we could NEVER give her on our own. I also want us, and her brothers to have as many great memories with her as possible. So, I'm really hoping this all comes together so those things can happen. 

Since I haven't posted pictures in a while, here are some photos our dear friend Paige took back in November. Paige has been photographing my family since our engagement photos in 2002. 

Here is Paige. 🙂

I took some pics before Paige arrived.

Here are more of the ones Paige took.

Well, that's it for this post. Hopefully, I'll have time soon to write more. You know I have lots to say, haha! Thank you for reading!

Much love,

Christy xo

In the hospital - Adenovirus

Hi! Long time, no see! I've been working on a few different posts, but I'm going to have to continue to wait on those. Since Harlie is in the hospital, I'll start there. I have been working on this post all week. It has just been way too busy for me to be able to sit down and stay focused long enough to make much progress. 

Sunday, June12

Sunday morning she woke up with a fever of 103. She held on to a fever all Sunday. When she isn't feeling well, it is hard to get all of her feedings in. Sometimes you just don't want food, you know? So, I need to balance her wishes with keeping her hydrated. That can be really difficult. Needless to say, she didn't get all of her feedings that day. 

Monday, June 13

Something woke me up around 2:30am on Monday, so I went in and checked her temp. I don't remember what it was now. I got back in bed and started thinking about how much fluid (or how little, rather) she had gotten on Sunday. I started to worry about it, so I got back up and went and tubed her some. She retched a little, which was odd, because she hasn't done that in forever.  After that, I couldn't get back to sleep. I just kept thinking about how she was going to miss her 8th grade celebration that day and her 8th grade moving up ceremony that night. I hate to sound like a baby, but it just seems that she has to deal with so many more disappointments than her fair share. She's missed so much, it just breaks my heart.

Our nurse couldn't work that day, so I was on my own. Not far into the morning, Harlie started having diarrhea. She was miserable, and so was I. Feeding her/giving her water was VERY challenging. I mixed two ounces of water with two ounces of formula and tubed her only four ounces at a time. It took me all day to give her one bottle of formula. As the day went on, at each tube feeding, she started to retch more and more. She hasn't retched in years and years. She got a nissen when she was very young. Back then, she was throwing up 30 times a day. The nissen makes it almost impossible to throw up. But, it doesn't stop the feeling that you want to throw up.

I made a few calls (to her pediatrician and her GI doc) and they told me to try a slow continuous drip of Pedialyte via her feeding pump and/or go to the emergency room. Well, if you know me, you know I don't want to ever take her to the emergency room. So, I pushed it and tried everything I could to keep her home. We started with 60 mls per hour (two ounces). But, she retched like crazy and complained of pain. So, I took it down to 30 mls per hour. She still retched, so I took it down to 15 mls per hour. But, with all that was coming out of her body, there was NO way I was going to keep her hydrated. She was losing 100s more mls of fluid than I could give her per hour. 

At midnight, I looked at Tom and said, "I made a mistake. I should've taken her to the emergency room." It has been a long time since she had any kind of GI bug. I am much more used to dealing with respiratory issues, and I have a lot more in my arsenal for that kind of fight. There was nothing I could give her to help her. At that point, I knew she was losing way too much fluid - way more than I could replace, even with her g-tube. She went downhill so fast!

So, we packed her up and Tom took us down there. Wow, it is a lot easier now that the boys are older. That was a new experience. Every other time, I had to take Harlie alone so Tom could stay with them. This is the first time I made him come with me to take her. We got there and as we were getting out of the car, Tom said, "Crap, the van is overheating." Ugh! I totally forgot that we still had that problem! I went in and got Harlie checked in and Tom took care of the car.

Tuesday , June 14

They got an IV and started fluids. 

She continued to retch and have diarrhea. It was awful. We got a room upstairs at about 5am. Docs/nurses came by to get some stuff straight. I probably fell asleep a little before 6am. Shortly thereafter, the fire alarm went off. It went on for well over 20 minutes.  I thought to myself the whole hospital could be out on the street and I wouldn't know (never heard from the nurse or any staff). Honestly, I didn't even care anymore. I joked with a nurse friend that that fire alarm makes you wanna die. I finally fell back asleep - while it was still alarming. I had been up since 2:30am the previous morning (28 hours) - I was SO tired.

I honestly don't remember many details about Tuesday. It was a busy day because it was her first full day of admission and there are so many people you have to talk to and say the same things over and over again. Plus I was living on so little sleep. 

Here is what I shared on Facebook Tuesday night...

Thank you all for your love and support today! Unfortunately she made no progress today. She just had a bad episode (6:30pm) and was complaining of a lot of belly pain. She said it had too much water in it. She's been on ONE ounce of Pedialyte per HOUR for a couple of hours. So, her nurse is giving her belly a break and holding Pedialyte for a bit. She's been on IV fluids since 1am and she is still dehydrated. 

The nurse just came in and is trying 10mls/hr of formula. Hello whiplash! That is just two teaspoons giving over an hour. I'm bracing for another horrible episode. Poor girl. She said she is a ticking time bomb. I think it is safe to say we are not going out to dinner tomorrow night for Murphy's graduation. I think she has to be tolerating at least 75mls/hr of Pedialyte before they will let her go home.

Oh, this morning when I returned with a cup of coffee, she was busy telling the respiratory therapist that I'm picky about her clothes. I'll have you know that she said that as if I wasn't there, and like it is a bad thing. Geez. No respect. I don't wanna know what she was saying about me when I wasn't there.

Update: at 7:30pm she had the worst episode yet. Poor thing! So, now she's NPO (nothing in her belly). They are increasing her IV fluids. This is definitely a step backwards. I hope she has a better day tomorrow. Thanks for the love, good people! xo

On Tuesday night, after her horrible episode, I asked her nurse if cardiology has looked at her labs and stuff. I really think they should be aware. Harlie was definitely still struggling with hydration and her heart physiology needs proper hydration. 

Not to be gross, but just to explain why I've been so concerned about her hydration - if she is getting 75mls/hr of fluids total (30 mls/hr of Pedialyte through her g-tube plus 45mls/hr of IV fluids) and then has an episode of diarrhea with a volume of 500mls, you can see how quickly things can go downhill. 

Wednesday, June 15

Cardiology came to see me on Wednesday morning. She said that they were not notified that Harlie was in patient. This has been an issue before at this hospital. I don't have this issue at the other two children's hospitals where she is a patient. Back in 2019 when she was really sick with the flu, the doctor did not want to call cardiology in. In fact, I remember having a conversation with him about it and me not understanding that line of thinking. I got so much kick back from him that I had to go and email her cardiologist myself.

Anyway, the reason I'm telling you this (because I want to vent for a sec) is because everyone keeps telling me that "they didn't know" and that I need to tell them to contact cardiology. Um, didn't I do that this time, too? It is so frustrating. Honestly, when we tell the ER doc that she is post-op 6 weeks from pacemaker surgery, shouldn't that clue someone in to contact cardiology? I mean, who the hell is getting paid here? Whatever. They are involved now, so moving on.

GI wanted to change Harlie's G-tube to a GJ-tube. A G-tube allows you to put stuff directly into the stomach. A GJ-tube allows you to put stuff directly into the jejunum (small intestine). They were thinking that her stomach was so irritated and likely had delayed emptying, so putting nutrition in the jejunum might allow some absorption. But, that wouldn't change the diarrhea. Cardiology said they didn't want her having anesthesia, so she would have to get it while awake. Ultimately, you really don't want to add more "stuff" unless you really have to. So, we decided against it and to just give her more time. 

Brooke is a music therapist and works here on Wednesdays.  We met her here last year when she was in the hospital with her bleeding issue post-op from her TMJ replacement surgery in April 2021. Brooke came to see her then, too. Then later she heard that we were looking for a guitar teacher. She's been teaching Harlie for a few months now. I meant to text her that we were here - but totally forgot. She got in on Wednesday and saw Harlie's name. So, she came to see her. 

My friend Michelle picked me up and drove me home so I could have dinner with the boys and shower and get a change of clothes. My van is still in the shop, so I have been without my own transportation.  Caylee went to the hospital to hang with Harlie that night. Caylee said she had a good night nurse and that they got her all ready for sleep. Caylee asked Harlie if it was okay if she stayed in the room by herself that night, so I could stay home. Harlie said yes. Not surprised - she is desperate to be more independent and treated as such. 

Thursday, June 16

Michelle picked me up (with coffee and breakfast for me 😊) and took me back to the hospital. At rounds that morning, the GI team wanted to reintroduce formula and send her home by early afternoon. WHAT?! I thought that was crazy. When you start talking about discharge, you are getting closer to your goals of getting out. We hadn't even discussed our goals yet! Basically, they were 1) making a change (transitioning her from straight Pedialyte to full formula - a BIG change) and 2) without knowing the result. How can you schedule a discharge under those circumstances? That makes NO sense.

I spoke with the cardiology team and told them I felt like we were being rushed out of the hospital (likely because they need the bed). Harlie started retching and complaining of belly pain soon after they started the formula. We cut the formula in half (mixed it with Pedialyte) and tried that. 

I said I was in no way comfortable taking her home already. She needs to be able to get enough fluids through her G-tube to maintain hydration - and we are no where close to that. They agreed, so that was the end of that conversation. Later in the afternoon, my friend Carol picked me up from the hospital and took me home to get ready for Murphy's high school graduation. 

I gotta tell you - it is SUPER hard to have one child in the hospital and be happy/focus on another child's life event. Especially when one child is Harlie and she's so complicated. While we were at the graduation venue, a doctor called me and I had to chat with her about medical stuff. It is so hard to switch gears like that. 

Anyway, obviously I am very happy for Murphy. My gut tells me he is going to like being an adult a lot more than he liked being a high school student. Maybe that's normal. Its just that he wasn't the most enthusiastic student. 

After graduation I had Tom drop me off at the hospital. Harlie was so upset. She cried and said, "I missed Murphy's graduation." While I was so sad for her - I was happy that she was sad she missed it. Every now and then it is good to see that your kids love each other and want to be there for the big things. Harlie doesn't show that side of herself often. I need to soak up the times when she does. 

I had packed some clothes for me to change into at the hospital - but totally forgot other shoes. UGH! There was no way I was going to wear my sandals with my leggings. Haha! So, I just slept in my dress.  This night was the worst. She really went backwards. She was up so many times and her poor body was in turmoil. Her night nurse was great, thankfully. She was the same one from the night before. She stopped her half Pedialyte/formula feeding and changed her back to just Pedialyte. 

They also grew concerned about her urine. It had turned orange. So they ran a urinalysis earlier that day, but needed a clean sample. So they had to cath her late that night. It was awful. I hate holding her down for stuff like that. 

Friday, June 17

The night moved into morning and she was in agony, crying and oh, so miserable. 

The good thing is that several people got to see her like that - not just me. So, her nurse and some docs got to talking. I heard, "Its a good thing we didn't discharge you yesterday!" by several people. I do love when I my instincts are right. 

Meanwhile, my friend Carol went to my house and picked up my shoes and things and brought them to me. Oh, thank you, Carol! 

Around 10am the cardiology team and the GI doc passed each other in the hallway coming/going from Harlie's room. They both came to talk to me and the cardiologist said, "I'm in agreement with what she wants to do, FYI." Then the GI doc said that she wants to give Harlie's gut 48 hours of rest (no G-tube feedings/Pedialyte at all). Since we are at five days with no real calories, and are looking towards at least seven days now, she thinks we need to give her TPN (nutrition through IV, that bypasses her GI system). 

She was miserable and wanted to hold my hand all day. That is so NOT like her! She is not the most affectionate person. 

They didn't take her down to Interventional Radiology until 6ish. 

On the way down to IR, the transport person said we had to put a mask on her. It was kinda "funny" to watch the nurse attempt putting a mask on Harlie. 😑 She realized there was no real way to do it when she breathes through her neck and her face. I said, "No. You're not putting anything over her airway. She was Covid negative coming into the hospital." I am SO over the world trying to tell me that my biggest concern should be Covid. It isn't. If it is your biggest concern, I'm not going to tell you it isn't. We are all not the same, therefore we cannot live with the same priorities. She's been hospitalized like 7-8 times since March 2020 - and not once did Covid have anything to do with it (and she has already had Covid). Here we are - hospitalized, miserable - for a virus that no one cares about. Oh, maybe I forgot to tell you that. At some point, they took a sample and said she has Adenovirus. She's had it before (and was hospitalized then, too) but it was the respiratory version. Clearly, she has the GI version this time. Which, in my experience, is way worse. Haha! 

Anyway, she got a PICC line (central line) under anesthesia and now she's on TPN. 

That night Tom came down and we had dinner downstairs. It was rather depressing. He stayed the night so I could go home and recharge a bit. 

Saturday, June 18

Tom took her outside. They had a "good" day. 

Sunday, June 19

Happy Father's Day to Tom (our personal fave) and all you other Dad's out there. As a dad, Tom has really been through it. He's extraordinary and I hope he knows that. He did joke that he probably should've changed her pajamas... 

Caylee came down at 4pm to sit with Harlie for the evening and I came and got Tom and took him back home. Murphy had to work. Murphy recently kinda/sorta changed jobs and we had not been to his new place yet. So, we took Cooper to dinner there so at least four of us could kinda be together for Father's Day dinner. It was good and I think Tom liked it. It is always good to see Murphy working, haha!

Then, I had to go pack my stuff and head back to the hospital to resume my life there. Ha. 

It was a difficult weekend for Tom because we had plans to go for a hard hike on Saturday and the weather was so beautiful for it. To make matters worse, we are scheduled to take Cooper to summer  camp in Maine in just 10 days. Tom has worked hard on our plans for that. We are planning to hike the steepest climb on the Appalachian Trail. Last year, we hiked down the 3rd steepest section which was 1,130ft of elevation in .8 miles (900ft of that was in .5 mile), in the rain. It was brutal. It was the last mile of a very long day. We stayed at a hut (slept in a cabin in bunk beds). 

Anyway, this year Tom has planned for us to hike Pinkham Notch to Wildcat E in New Hampshire. This section is 2,000ft of elevation in 1.5 miles with 1,000ft of that in just .5 mile. I think the next day or so we are supposed to hike the Baldface Loop Trail (10 miles).

If Harlie doesn't turn around really quickly, I just won't be able to leave her. So, Tom will have to go without me, which blows.  

The timing of this sickness was really awful. Not that any time is good to be in the hospital - but geez, she/we are missing a lot of things we were really looking forward to. My calendar keeps giving me reminders of things that we are no longer doing. 

Today is Monday and there has been a new development. I will stop here since this post is way too long. I'll start a new one and let you know the plan from here on out. 

Thank you all so much for all your kind words, thoughts and prayers. I just can't tell you how much your support means to us. 

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

I started a post over a week ago... but never was able to finish it.  I'll keep it at the bottom of this post.  But, want to give you a little summary first.

Overall, Harlie is doing great with no trach!  The nights are way better than the first several after coming home.  She seems happier (and she was happy before!).

The second we got home from the hospital I went upstairs and started to remove all trach stuff from her room.  Stuff like her IV pole, her heater/humidifier, inhalation bag, stationary suction machine, HMEs, suction filters, etc.

WOW!  What a difference that made in the look of her room!  It is already more kid-friendly and that is so exciting!

The next day when Brandy came in to work, she couldn't wait to go through all the supplies and clean out everything we no longer need.  It is amazing how much stuff goes along with having a trach.  I've known that all along.  But seeing all the equipment and supplies piled up and ready to leave this house is amazing.  It is so hard to believe this is our new, improved reality!!!

And I just can't describe what it feels like to be so free - no suction machine to think about, no emergency trach supplies to keep on hand wherever we go.  It's pretty amazing.

I've actually been having a hard time writing about it!  This is at least my 5th attempt at blogging in the last several weeks and it doesn't feel normal.  The words aren't flowing.  So, I've been giving up and saying to myself that I'll come back when I'm more in a blogging mood.  It just all feels weird.

Maybe it's because this was such a huge, monumental big deal to us.  We had to work so hard to get to this point.  And we had to put Harlie through so much torture to try and give her a better airway.  An airway that most are just born with.  And we did alright by her.  Two out of the four jaw reconstructions worked!  Traveling to Boston Children's Hospital was the right call.  And worth every penny.  Knowing that I made the right decisions (when smaller tasks seem so difficult) is a feeling I just can't describe.

I hope that when I say "thank you" for rejoicing with us, you know how much I mean it.  To finally get to share FANTASTIC news and hear "congratulations" and "cheers" was a feeling like no other.  Thank you so much for sharing in our joy and huge success!  It has meant so much to us!

We have been very busy since, and I have plenty more to share.  But, will have to save it for another day.

Much Love,
Christy xo

Here is what I started on a while ago:

August 19

So, how is Harlie doing a week post-decan?

Great!  She really seems to be very happy that it's gone.

I'll start with where I left off - in the hospital.  On Monday afternoon, Harlie's cardiologist came back by to see me.  We got caught up on things.  It had been a while since she had seen Harlie.  I feel like I need to go back a bit to explain where we are.

I have taken Harlie to hundreds of doctor's appointments.  And most of them were because she was sick.  So, I have a hard time with taking her for well checks.  For one, doctor's offices are pretty germy places, and in general, I try to keep her away.  And two, we're over it.  She's the healthiest she's ever been and we are trying to just live our lives.  I do take her to her pediatrician's well checks for her immunizations and to bring her pediatrician up to speed.  But, really, that's the only well check we do regularly and on schedule.

But, she has a pretty complicated heart condition with a pacemaker and apparently, I need to be better about scheduling those well checks.  Who knew?

So, she has her cardiologist in DC (who we've seen since I was pregnant with Harlie) and after Harlie was born, we started seeing a cardiologist in Richmond.  It was important to have one in both areas so we didn't have to drive to DC all the time (back in the day we were seeing one of the two fairly often) and so when she was in our local hospital, she had a cardiologist that could follow her.

Well, as time has slipped by and Harlie has gotten healthier, we've really only seen her local cardiologist for pacemaker checks.  And those checks were not really "well checks" since we had a problem and he had to fix it by adjusting her pacemaker.  After he adjusted in June of 2014, we went for a follow up a few months later (I think in September) and I don't think I've taken her back since.  Everything seems good, I know her battery is good (it's good for like years), we're busy living life, so I just don't think about it.

So, apparently, Harlie hasn't had a true cardiology well check in some time.  And it's been almost a year since her last pacemaker check.  So, her cardiologist suggested that she get an echo (ultrasound of her heart) while she was there.  And depending on how Wednesday night went, get the pacemaker doc back up to see her.  So, all of that would count as a well check and I don't have to worry about it for another year.  Awesome.

Wednesday night went pretty much the same as Tuesday night - with her low heart rate alarm blaring all night.  So, the pacemaker folks returned Thursday morning.  They told me that they want me to do phone checks every three months - where you put the phone up to the pacemaker and it sends info to the office.  We aren't set up for that yet.  So, they are going to send me what I need for that.

And she got her echo.

So, after all that was done, she was ready to go.

The first night at home was rough.  We woke up at 3:30am because she was so noisy.  We sleep with a baby monitor on so we can hear her and her alarm, should it alarm in the night.  We went and propped her up with pillows.

Unfortunately, I didn't think that through at the hospital.  In the hospital she was sleeping with the bed propped up.  For her whole life, every time we've been in the hospital, she likes to be in a more sitting up position.  So, when I tried to flatten it out the first night, she stopped me and pushed the buttons for the head of the bed to go back up.  Not a battle I should fight, and if it makes her happy, so be it.

Except we were not recreating our home conditions.  And when she was sleeping flat at home, she sounded terrible!  And it was scarier than I realized it would be.  Worrying about your child's breathing abilities in the middle of the night is no fun at all.  Luckily, her sats and heart rate looked good.  I took some video of her sleeping and sent it to two of my trach mom friends who live out west.  I was hoping that one of them was still awake.  And my friend Ann responded and made me feel so much better.  After years of being told to read the patient, not the monitor - I needed to read the monitor, not the patient.

But, after putting some pillows under her, she seemed a lot better.

Since then, each night has gotten better.  Tom got a wedge pillow and that has been great.  She realized soon after getting home that she didn't want to wear a bandage on her neck anymore.  She seems really proud of her naked neck now.

Decannulation Day!

August 11, 2015

After a long day filled with lots of waiting, I got to pull out Harlie's trach, and not put a new one in place.  And after almost NINE years (or 3,242 days), and for the FIRST time in her whole life, she does NOT have a tube in her trachea.  And I finally got to post the beautiful words...

Meet the newest member of the Naked Neck Club!

Tom took a video of the "event."  He tried to upload it but it wouldn't work.  I'll share that once we get that done.

After knowing that we were going to be able to pull it, but then having to wait hours to do it, it almost felt anticlimactic.  But, I suppose that's not surprising, given that we have been dreaming of that moment for so very long.  I have no idea what I was expecting the moment to be like, but it would have been better if there were fireworks, or if confetti came down from the ceiling.  Is that too much to ask?! Darn it! I should have had Tom play some theme music at least!  But, we were just sitting there, waiting.  And then an ENT Fellow came in and said it was time to do it.  So, we stood up and just did it.

That was it.

I'm going to have to talk to someone about their celebratory policies, because they are seriously lacking!  Kidding, of course.

Here's the music we should have played:

The very first time I heard that song, I thought of this day - Decannulation Day.  And coincidentally, the American Authors JUST played at Innsbrook last Thursday and we got to go.  Kinda weird, right?  I chose to take it as a good sign that things were going to go her way.

Anyway, ever since the trach came out, she's been holding her throat.

There is a hole (stoma) now and a lot of air is escaping through it.  I think that feels weird for her (especially considering she was capped all day) to have no pressure there.  So, when she coughs, or sneezes, she presses the area.  Her voice is definitely weaker sounding, but that's because so much air is escaping before it makes it to her vocal cords.  She learned very quickly that she needs to press her stoma to plug it to make more air go up instead of out, which makes her much louder and easier to understand.

As far as her stoma goes, we spoke to her ENT about that yesterday.  He said that we need to give it some time to try and heal on its own.  But, it is very unlikely that it will close since she's had it so long.  So, he said he is okay with surgically closing it in the next month or so.  Of course, it would not happen that soon unless he gave us a date like right now.  So, I'll have to talk to him more about that before we leave.  He might not be able to schedule it until after he sees her again, which would mean a couple of months probably. We'll just have to see.

As far as closing the stoma, apparently it's not as simple as stitching the skin closed.  Since she's had it so long, a tract of scar tissue has likely formed from her trachea to the skin on the outside.  And to close it, he will have to actually remove that whole tract of tissue and then let it heal from the inside out.  One of the complications is that if the skin on the outside heals closed before the trachea, air can escape the trachea and go under the skin and into the chest cavity (I think that's what he said).  This is bad, and he says the method he uses is best to avoid those consequences.

Until then, she will still cough up secretions through the hole and she'll have to plug it with her finger to talk.  It feels like a step backwards, but I know she'll make big advancements once it's closed for good.  This also means no swimming or water slides.  This is going to be hard, because she is most excited about being able to go down a water slide.  She's actually less safe around water now then she was while trached and capped.  There's absolutely no protection now - and her stoma isn't small.  And clearly we can't put a waterproof covering over it, because that wouldn't allow air to escape.  I'm so glad that we already went to the beach!!!  I don't know what we'll do about the pool...

Anyway, a couple of hours after decannulation, Tom and I went to get some dinner.  Tom found a place within walking distance so we could go sit down and have a non cafeteria meal and a celebratory drink.

Cheers to all of you great friends and family for 9 years of support.
Please, go crack a cold one, pour a big glass of wine, or do a shot.
Today is indeed a Big Deal!!
~Tom

I had some food leftover, so we brought it back so I could have lunch or dinner tomorrow.  I put it in the family room refrigerator and I felt a wave of PTSD ticks come on.

You're doing alright if you've never had to put food in a hospital family waiting room refrigerator.  Ugh.  Something about putting your name on a label with your unit number and date and then cramming it in with everyone else's food gives me the heebie jeebies.  Not to mention I've done it more than I want to recall.

~~~~~~~~~~~~~~~~~~~~~

It's now 2:30am and I need to try to get back to sleep.  It's been a restless night because her alarms have been going off a lot.  Her heart rate appears to be dropping pretty low.  Like lower than what her pacemaker is set to go.  So, that's weird.  They are aware and we'll have to see if an EP (electrophysiologist) can come and check it tomorrow.  It could be that the monitor isn't picking up some beats or something.  I don't know.

But, at one point I woke up to alarms and Harlie crying and coughing.  They were trying to change the monitor leads on her chest.  She's very protective of her arm with the IV in it and is always afraid someone is going to mess with it, so she fights if you're anywhere near it.  Plus, even though they were trying to tell her what they were doing, she couldn't hear them because she doesn't sleep with her hearing aids in.

Anyway, I had to get up and help out.  And it is SO freaking weird to hear secretions when she's coughing and know that I can't suction her.  Crazy!

Okay, I'll finish up tomorrow.

~~~~~~~~~~~~~~~~~~~~~~~~

7:00am

Nothing new to report since the wee hours in the morning.  Harlie is doing great - without her trach, so far.

The EP just came and made some adjustments to her pacemaker.

Here she is this morning, in her private room with her own bathroom, in the CICU (cardiac intensive care unit) enjoying her gifts (thank you Bill and Becky and Grandma and Pap Pap)!  She only tells me that she wants to go home about every seven minutes, so we're good!

1:15pm

I keep getting interrupted so this post is now way longer than I intended.

Since she's well, they let her go to the playroom in the Heart & Kidney Unit.  We saw so many nurses that have taken care of her in the past.  It was so great for them to see her up and healthy and talking!  She told everyone that she's eight and that she's going to be nine soon.  I can't tell you how awesome it is to hear her answer questions, get her wants and needs across and hear her observations about the world around her.

She's now telling me she wants to go home about every two minutes.  Just in case you were wondering.

It tickled me to see her walk back to her room from the playroom.

Don't you just love all the kid friendly colors?

Our social worker came by to visit, which is always fun.

Heather and Harlie

As you can see, she is still covering her stoma.  Between not using her hand with the IV in it, and this hand always on her throat, she has no usable arms.  Which has been interesting.

I went downstairs to go see a friend who is here for his child's appointment and get some lunch.  While in the cafeteria I ran into a friend from high school who is here for work and he bought me lunch.  How nice was that?!

When I got back upstairs to the CICU Heather told me that Harlie's cardiologist came by while I was gone.  She asked Harlie, "Where's your mom?"  And Harlie said, "She's downstairs."  I had to laugh.  She is so funny - no matter what she says.  Anyone who comes in her room to do anything leaves laughing.  Her nurse told me that while I was gone she pressed the call nurse button on the remote and when she came in Harlie told her that she needed more tape on her neck.  And that she wanted water.  So, that's the first time I'm aware of, that she did that.  Wow.  I can't tell you how great it is to know that I can step away and she can get help when she wants it.  Love it!!!!  Little Miss Independent!!!

So, overall, doing great here.  She knows she can't go home until tomorrow, but that hasn't stopped her from letting me know that she wants to go home.  She's very concerned that Rooney is missing me too much.

I have to go because Harlie needs some stuff.  And she has no problem letting me know it.

Thank you for all the love and support!  I can't tell you how awesome it was to look at Facebook and see how many of you were sporting We Heart Harlie tees, signs and love in general.  I am truly overwhelmed.  And it's been so fun to have you join in our celebration!  Thank you for caring so much about Harlie and our family!

Much love!!
Christy xoxo