Liver Update

Well, it's been like eight months since my last blog post. I started this post back in February. I think I'll just start with what I wrote then and go from there..

February, 2024, Fontan Associated Liver Disease (FALD)

Hi. Harlie had her appointment with the hepatologist (liver doctor) on February 16th. I really felt like a fish out of water there. Since kids typically don't have liver issues, there really aren't many pediatric hepatologists out there. So, we had to see an adult doctor, who sees all adults. Well, except for Harlie, of course. We definitely got some stares and I'm sure people were wondering why the hell a little girl was seeing a liver doctor. She definitely does not look her age.

We saw a fellow or resident first (I can't remember and it really doesn't matter in this situation). He did the fibroscan (ultrasound) of her liver. Before he did it, he said that if the scan comes back that it is soft (which is good) then great. But if it comes back that it is hard (which is bad) there could be two reasons. One reason is that it is in some stage of cirrhosis. Another reason is that is "just" full of blood. So, if you think of a water balloon - the more water it has in it, the harder it feels. This is said to make one feel better, I suppose. But, I think the fact is that the liver should not be so full of blood that it is hard. I also think that in Harlie's case (a Fontan patient) that the liver being full of blood all the time is what causes the cirrhosis. So, again, I don't feel any comfort. 

Anyway, he did the ultrasound and then just left the room. I figured then that the scan wasn't good. I guess technically, he's not allowed to talk about it either way. But, I got the impression he didn't want to be there anymore. Ha, you and me both, buddy! He returned with the doctor. He was nice. But I definitely got the impression that they don't normally see teenagers in that practice. It just feels weird - and tiring - to always be cutting our own path vs. walking on a nice, established sidewalk. 

He said that if he just looked at her ultrasound/scan, then it would tell him that she has cirrhosis. Since it could be that it is "just" full of blood, he can't say with certainty. The only way to tell exactly is to do a liver biopsy, which is invasive and unnecessary at this time. He said if she were being evaluated for a heart transplant, for example, then they would want to know exactly how her liver was, so a biopsy would be necessary then. Luckily, we aren't there - yet. 

He said he wanted to get some blood work and he would be able to see how her liver is functioning. There's also a MELD score, which measures kidney function, liver function, blood clotting time and sodium level. So, you take all that information together to get a picture of how her liver is doing. Clearly, he didn't have all that information at the time, so we couldn't go over everything in person, which is a shame. He said she needs to be seen every six months. This sounds rather aggressive for something you really can't do anything about.  

Later that afternoon I received a bunch of notifications that information was available in her portal. So, I went and looked. Her fibroscan came back as Fibrosis = F4. I, of course, had to Google it... 

Ranges from stage F0 (no liver fibrosis) to F4 (liver cirrhosis). Stage F4 is also called liver cirrhosis, the final stage of progressive liver fibrosis.

Damn.

Luckily, her bloodwork all came back okay. Her MELD score is low, so that's great. She does have blood clotting issues and that's why she's had to see a hematologist. We've never really understood that - but maybe her liver is causing that issue. I'll have to ask when we see her hematologist again. 

I will admit that when I first saw the F4, it was pretty upsetting. It took me days/weeks to process it. Okay, fine, I'm still processing it. I mean, how do you manage that in your brain? She's only 17. But, I have to try to "ignore" that and focus on the MELD score and her other labs. As long as those are good, I guess that has to be good enough. Ugh, the games I have to play in my mind to make life be okay.

Her liver just feels like a ticking time bomb. I mean, really, it is only a matter of time till her labs begin to be affected. Then what? What will that look like? 

It is the same situation with her pacemaker. It is only a matter of time till her pacemaker gives out and needs to be fully replaced (not a simple surgery). It is also the same situation as her TMJ infection. It is only a matter of time before the antibiotics will not be able to fight off the infection and she'll need her left TMJ replaced. If I'm being brutally honest, it is the same situation as her heart. Eventually that will give out, too, and we'll be facing a heart transplant. As one doctor told me, sometimes the hearts can outlive the liver. Hard to say what will happen and when. 

Wow, I feel like this took a dark turn. But, it is our reality - whether I talk about it or not. I have been packing these fears away for many years. I remember when we met with Harlie's heart surgeon after her DKS surgery (her 3rd open heart surgery). He was originally planning on doing her DKS and Fontan operations at the same time. He changed his mind and decided to only do the DKS. I remember that Tom and I were pretty bummed because we didn't want to still have another major open heart surgery looming ahead. After the DKS, he told us that he never could have done both surgeries at the same time. He said she has "the world's worst scarring" and it took him forever to get through it. This meant she would be on the bypass machine too long - so he wouldn't have had time to do the Fontan, even if he planned or wanted to. He also told us that her heart would likely run out of gas in her late teens/early adulthood. At age three, that sounded so far away. At almost 18, that feels like right now. 

November, 2024

So, that's what I started eight months ago. Since then, she's seen a liver doctor two more times and turned 18. On August 30, she saw the same doctor for her six month follow up. Sometimes going to appointments wear me out. On this particular day, I knew we were going to the adult facility. So, I tried extra hard to give myself extra time for parking. That parking garage is terrible and I hate the elevator so, so much. There are two relatively small elevators and there are usually so many people in them that it can take several tries before we can get on an elevator with Harlie's chair. As I was about to pass the main entrance of the hospital, I was thinking about that and saw the valet line. I knew the elevator to get to her doctor was right near that entrance and in the last 18 years, I have NEVER used the valet parking. So, I decided to do it this time. I got in line and watched the guys work the line. OMG, so slow. He finally got to me and I asked him how much it cost, I think he said $5. But cash only. I didn't have any cash. Ugh. So, I got out of the line and headed to the dreaded parking garage. I drove through the entire garage and there was not a single spot to park. In one level, we were all stuck for five whole minutes. At this point, we were going to be late for our appointment. Not feeling like I had much of a choice, I returned to the valet line. I was thinking I would go get cash back from a purchase. As we were headed to her appointment I realized I didn't even have my debit card. So, I really had no way to get cash. Well, damn. This worried me for the rest of the appointment...

Anyway, the doctor ordered a vascular ultrasound two weeks in advance. So, when we were there he told us that her ultrasound showed that there's no liver cancer. Apparently, patients who have FALD are at an increased risk of liver cancer, so that vascular ultrasound was to check for liver cancer. I'm kinda glad I didn't know that. He also mentioned that we might want to switch to a different doctor. Back in the spring of 2024 VCU hired a pediatric hepatologist and he has been focused on research, but is supposed to start seeing patients soon. Other than that info, nothing else changed medically speaking since February. So, that's good. I made a note to see if that new doctor was available for her next appointment in six months.

Then, we headed back to valet to get the car. Ugh. I went up to the lady with my ticket and said, "Um, I think I have a problem." She said, "There are no problems." Ha! I wish! Anyway, I told her that I was so sorry, but I had no cash and no debit card. She said, "Well, there's no way you would've known that our credit card machine is broken, so today is no charge!" She was so nice! What a relief! Tom made fun of me because I was so worried about not being able to pay. Still had to wait over 30 minutes for my car to arrive, but you take the good with the bad and overall, I was happy. Super hungry (our appointment was 10:25 and by the time we got out of there it was well past 1pm!), but glad to be able to just load her chair in the car and go.

Just a few weeks later I received a call from a scheduler at VCU. She said that Dr. Karpen wanted to see Harlie and he was available October 2nd. Wow. That's kinda crazy. I read his bio, he seems impressive and I feel like we are lucky to get a pediatric hepatologist here in Richmond! I hope her insurance is okay with her seeing another liver doctor just over a month later. But, super convenient to have a doctor call me to schedule an appointment! I wish they were all like that! Haha! Bonus, too, he was going to see us at the Children's Pavilion - which is SO much better than going to the adult facility! No more parking worries! Woohoo! It must sound crazy how the "little things" like parking or elevators stress me out so much.  But, that's just the way it is.

When he came in to see us he said that we were his first patients at CHOR! Obviously not his first ever, of course. He was great and I really liked him. He ordered more labs and we spent a good amount of time letting him get to know her medical history and him explaining some stuff about liver disease. 

Honestly, we don't know anything more than she's at a much higher risk for FALD and liver cancer. Not only is she a Fontan, but she lived with really high pulmonary pressures for most of her life, which is not good for the liver. If I remember correctly, he doesn't think the fibroscans give accurate information. So, I'm just going to put that F4 rating out of my mind. He also has a better follow up plan - one year! So, hopefully, he'll still be at VCU next year and we'll get to see him again. 

That's it for her liver update. Overall, I feel better about it than I did in February. It is so easy for me to think about all the bad medical "luck" she's had over the last 18 years and immediately go to the worst places in my head. I have to work really hard to try and quiet those voices/fears and get myself in a better, less worried place. Until next time, of course. Then I get to do it all over again. 

Since it has been so long, I have a lot more I could share. But, I won't do it in this post. Hopefully, I'll get to work on my next post soon. 

As always, thank you for caring about our girl! 

Much love,

Christy xo

Heart Update

Hi. Here's another thing that's been on my mind - Harlie's heart. l think I'm just going to think out loud and hopefully it'll make some sense.

She has a Fontan (simple description - she is a single ventricle and her circulation works entirely different than a normal heart). 

She's had some NSVTs (non-sustained ventricular tachycardia) in August and October. I've tried to google this - but I think NSVT is different for patients with congenital heart disease. I don't need to know more than I need to know, so I just need Harlie's doctors to explain what it means to HER. 

She has a pacemaker. The wires that were put in her heart were put there during her very first open heart surgery when she was just four days old. That means that those wires are now over 17 years old. Apparently, that's getting old as far as pacemaker wires go. This issue has me confused. We've seen several Electrophysiologists (pacemaker docs) and I gotta tell you, I don't understand it. The next appointment we have, I'm making Tom go with us because it is impossible for me to go to an appointment that I don't understand the info - then come home and tell Tom anything useful about the appointment. 

I'm going to try to explain why I'm confused. The pacemaker has wires that go into her heart. They connect to the generator (battery) that is in her abdomen. The generator was put in when she was five years old. Oh my gosh, my memory is going bad. I can't remember how many times the generator has been replaced! Once? Twice? Ugh. Okay, I just searched my blog and found a post that I started writing about this subject and never finished! So, she had her first generator replacement surgery on May 6, 2022 (she was 15, so the first generator lasted 10 years). 

For a year to months prior to the first generator replacement, we had regular check ins and we watched the battery life decrease. When they put the magnet thing on her abdomen, it reads all the info from the generator and the battery and the computer will try and predict the battery life remaining, based on current usage. The more the pacemaker has to fire, the more battery it uses. With the first generator she had (from age 5-15) we had to call in pacemaker transmissions from our home phone. Leading up to the generator replacement was kind of stressful because they would be like 6 months left, 5 months left, 4 months left and I'm like so schedule it already! Anyway, so it was finally replaced in May of 2022. The new generator is awesome and hooks up to Harlie's tablet, so they set the transmission frequency so we don't have to do anything! That's my kind of device, haha!

During Harlie's TMJ surgery in April 2023, I remember the docs struggling with her pacemaker settings. Anytime she goes into surgery, they have to change the settings to be stronger or something for when she goes under anesthesia (also, it depends on what equipment the surgeon is going to use - some equipment can make the pacemaker do stuff the don't want it to do). After surgery, they change the settings back. While she was recovering in Boston, they asked me if I had heard anything about her wires. I was like, um, no. So, when we had her appointment with her pacemaker doc in August of 2023, I asked her if she received any clinical notes from Boston. She did and she noticed some readings that made her put a 48-hour Holter monitor on Harlie. She said that the wires are showing signs of age. I don't remember her words exactly - but the way I understood it is that she was having to adjust the way the pacemaker works because one of the wires wasn't working consistently, or something like that. That's when she told me that 17 years is getting up there in age for wires. 

She told me the signs to look for should the wires stop working. She said that Harlie would be lethargic and might not feel well and her heart rate would be less than 60 beats per minute (the pacemaker doesn't let her heart beat get below 60bpm). She said if the pacemaker were to suddenly stop working, her heart has an escape rhythm of about 30 some beats per minute (what her heart would beat on it's own - without the help of the pacemaker). So, we would be able to get her to the hospital. I wasn't told any of that when we were just looking at the battery dying. So, it sounds to me that the wires are a totally separate issue than the battery life. I mean, they can see how much battery life is predicted any time they want. So, it shouldn't run out of battery all of a sudden with no warning. 

So, when are these wires going to stop working? Replacing the wires is a bigger deal than just replacing the generator because the wires are in (or on) her heart. Of course, no one can tell me. So, one day in September, she could barely make it from the school bus to sitting in the chair in the kitchen. She didn't feel well, she looked terrible and was super tired! So, I ran and got the pulse ox and just knew that her heart rate was going to be less than 60bpm. But, it wasn't. So, then I took her temperature and she had a fever. So, I knew it wasn't a heart thing. Then we realized she had Covid. But, seriously, how is a parent supposed to live like this?! 

Then in October she had that TMJ surgery in Boston. During that hospitalization she had another run of NSVTs plus she had really low blood pressures. I can't remember if they upped her pacemaker low or if her cardiologist did it after - but around this time they changed her low setting from 60bpm to 70bpm. They also said that she needed to go on a beta blocker for the NSVTs and they wanted her to stop taking the Enalapril (she's been on that her whole life) because her blood pressures are too low. While that might not sound like much - that's three new things! 

We came home from Boston on October 14th, I believe. Then on Tuesday, October 24 - Harlie had an appointment with her local cardiologist to follow up on all her heart stuff. I really like him and was looking forward to talking with him. I just felt like he would give me his opinion on what is going on with her and he would tell me how worried I should be. Plus, I think he could help me understand this wire thing. 

When we got there she got an echo. That took about an hour. Apparently her anatomy makes imaging difficult. Plus, she has a lot of scar tissue around her heart. At any rate, the echo shows all her normal issues - no new issues, so that's good. While they were doing the echo, I emailed her cardiologist the clinical reports from Children's National and from Boston. That's when the doctor doing the echo told me that her cardiologist wasn't in town and we would be seeing a different doctor. Ugh. Seeing a new to Harlie doc versus a doc that we've known for 17 years are two totally different appointments. I wasn't prepared for a new to us doctor. Her cardiologist emailed me right back and told me why he couldn't be there and who we would be seeing instead. He told me that I would like him. 

While he was right (I liked him fine) it wasn't the same appointment I wanted it to be. There was also another person with him. She was a transition coordinator or something. The doctor said the same thing her other doctor said about what to look for and her escape rhythm, etc. Okay, so when will her pacemaker need to be replaced? No one knows. Since this wasn't a cardiologist with whom I have a good relationship I couldn't say, Cut the crap, doc and tell me! Haha! 

So, then the transition coordinator took over. She basically talked about what it looks like after kids turn 18. It is complicated (no surprise there) because for some of her medical issues, there aren't adult specialists who know congenital issues, so she will have to keep some of her doctors. But, since kids with congenital heart disease are living longer, they have developed a new specialist - an adult cardiologist who specializes in congenital heart disease. I think she told me it takes like 25 years to develop a new specialty. Anyway, I wasn't prepared to have this kind of conversation. I know she's getting older and that's great and all, but change is SO hard for parents who have children with chronic health issues. When we find people we like and trust - and they like and trust us, it is so incredibly hard to lose them - or have to start all over with new people who don't know us at all. So, listening to her and starting to think about all the changes that might happen - well, I started to cry - and I hate to cry. Especially in front of someone I just met! I mean, I have a reputation to keep - I can't be crying at appointments! Then she told me that she makes someone cry once a week - or some kind of lie to make me feel better.  

They also told me that Harlie has to start seeing a Hepatologist (liver doctor). They don't have pediatric hepatologists because kids don't have chronic liver disease, I guess. But, with kids with Fontans, they know that a certain percentage of them can develop liver disease. Here's what I read:

One of the hallmarks of Fontan circulation is permanently elevated central venous pressure, which leads to congestive hepatopathy. Subsequently, liver fibrosis, cirrhosis or hepatocellular carcinoma may occur, all of them constituting an entity called Fontan-associated liver disease (FALD).

Since Harlie is 17, it is time that she started to be watched for this. It sounded like this was the normal process for kids like her, so they would schedule an appointment for us. 

I am especially worried about Harlie, because she is not just a Fontan. She also has lung disease and her terrible airway. For many years she had very high Fontan pressures. She's been on Sildenafil (viagra) for four or so years I think. That has helped and definitely brought her pressures down. But, clearly she's had way more years with higher pressures than with lower pressures. So, what does that mean? Is there a scale of how bad her liver is? Are there signs? I'm told there is no treatment or ability to stop it from happening. I guess if a patient has a good heart, but their liver gets bad, they can get a liver transplant. I really don't know much at all. 

I don't remember how I was notified, but months ago, I was told that Harlie had an appoint with Hepatology on January 30. I wasn't feeling well, but obviously, I had no choice but to go - I mean we've waited three months for this appointment. I wanted Tom to go with us since this was new information and I didn't know what I was going to learn. But, his work schedule didn't allow it. The day before the appointment, I get a call to check in. She said she was checking Harlie in for her GI appointment. Confused, I said, no, this isn't supposed to be a GI appointment, it is supposed to be for hepatology. Also, we already have a GI person, and this was not our GI person. So, I said does she handle hepatology under the GI department? She said, yes, she does. I looked and Gastroenterology, Hepatology and Nutrition are lumped together on VCU's website. So, it kinda made sense that the scheduler said GI appointment. Okay, fine. 

So, the next morning, Harlie and I head on down to VCU. We check in and are shown to the exam room. The nurse gets her vitals and then asks, "Do you have any GI concerns today?" Um, no. So, I said, "This is not supposed to be a GI appointment. This is supposed to be a hepatology appointment." 😑

We all know where this is going. 

The GI nurse practitioner comes in and immediately apologizes. There's been a mistake. Not sure how it happened, but somehow her hepatology referral got changed to a GI referral. She said something about since they don't technically have a hepatology department. Needless to say, I was ticked. Like, for real. I told her that Harlie missed a day of school, I missed a day of work and we've been waiting for this appointment for three months. UGH! Does no one care about my mental health?!?! 

I know it wasn't her fault - and I told her that as well. But, also, we already have a GI person! Ugh. She said that she was sorry and all that stuff. But, then said that she was really glad we were there because our food order for Harlie had expired and she was surprised we were still receiving her food order from the supply company. Apparently some higher being requires that patients be seen every freaking six months to get food. Are you kidding me? She's 17, done growing - so there are no changes to her food order. Absolutely no entity thinks about the special need family when it comes to care. At this point, I will never be able to work full time again (well, get paid for working full time, I mean). 

We left and I was really feeling so crappy. Literally every aspect of caring for her is harder than it should be. How is this sustainable? It isn't. This is another reason why I am feeling so burned out, overwhelmed, alone, etc. 

Plus, I didn't get to learn anything about her liver. Also, I just want to say that any comfort I might have felt that this is the normal process for kids like her - is gone. It doesn't feel like kids see hepatologists around here. This feels like it isn't normal at all. 

The next day I got a message to call and schedule an appointment with a hepatology doctor and they gave me the number. I called and after holding for 15 minutes, they told me they were going to have to call me back. Of course. They called back and told me that they were going to find a place for her but it would take some time. The next appointment was in April. Part of me wanted to say that it isn't urgent. I mean, I don't think it is anyway. But, then I was like, oh well, I guess I'll let them work us in. A few days later, they called me back and gave us an appointment for February 16th. Wow, okay. 

I have no idea what to expect. Will they draw labs? Do any other tests? Or just talk about it then set up tests later? I don't know. Sometimes stuff like this weighs so heavy in my mind. On the good days, when I feel stronger, it doesn't bother me as much. I guess the stronger I am, the deeper I can bury it. If you've ever had to dig a hole in your yard, you might be able to get it. I don't know. Today, as I'm writing this, it feels pretty heavy. Like, my stomach hurts as I'm thinking about it. So, I'm going to take a break. Harlie is home sick again today, so I'm going to go do some stuff with her, then I'll come back and finish. 

A few days later....

Today is Friday, February 9th. It has been a few days since I started this post. Today, I am really struggling. I think I'm going to start a new post, since that will sort of be a new topic. I'm trying really hard to keep my posts a little more focused.

Harlie has missed another three days of school this week. I'm not sure what that's about. But, she has picked up her guitar a lot lately, so that's cool. 

Also, here's a Facebook memory from a few years back. 

Here was the other picture.

I forgot to mention in my TMJ post that she appears to have more facial paralysis since her TMJ surgery in October. Her smile isn't like that anymore. I'm not sure if she will regain it or not. I guess time will tell. Makes me sad right now, though. 

As always, thanks for checking in!

Much love,

Christy xo

TMJ Update

Hi. There have been some developments with Harlie's TMJs since I last blogged. 

Here's a recap:

April 2021 - She had her first prosthetic TMJs placed on both the left and the right.

May 2021 - a growth appeared at her incision sites, I took her to several doctors to try and find out what it was. Just yesterday I found a clinical note from one of the docs we visited during this time period. Her note said that mom was overwhelmed and teary at times. Yes, it was a VERY hard time because people were still nutzo about Covid and getting Harlie in front of people with a serious issue was such an unnecessary battle. 

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

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

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

April 2023 - the right TMJ was removed since that is the side where the infection re-appeared. The surgeon said the right side had a track and we never would've beat it with antibiotics. He put a spacer in it's place. 

October 2023 - a new right TMJ was placed, and the left TMJ was repaired since he found it to be dislocated.   

December 2023 - We were finally able to stop the Doxy! Yay! This was great, because by November, it became difficult to get her Doxy at all. For some reason, there was a low supply, and I would have to go to several different locations to get what she needed. Unfortunately, I've noticed that there's been a major problem with getting any kind of customer service when it comes to medication. I get that the pharmacists are over worked and under paid, under appreciated, etc. But, at the end of the day, my kid needs this medication. I know that they don't know why she's getting this medication (I think a lot of teens take Doxy for acne) - but they really do not care if she goes days or weeks without what she needs. I'm the one who has to figure it out, feeling like I have no help. This became a huge stressor and just remembering it now as I write this makes me so mad. I mean, I am at our local pharmacy so often and I see the same people (for the most part) over and over and there is never any type of recognition that they've ever seen me before. Or that we just had the exact same conversation about trying to get Doxy two weeks ago. I just don't understand. 

So, when we were finally able to STOP giving her Doxy, we were THRILLED. It was a little scary at first. But, her surgeon said he felt really good about how the surgery went and he didn't have to go into her mouth this time, so the whole site was cleaner, in general. 

I'm guessing that you might know where this is going...

On the 20th of January, I was getting Harlie ready to go to Caylee's baby shower. I looked at her incisions (which is now just something I do on a regular basis) and noticed a bubble/blister looking thing on her left side. I really can't describe how I felt when I saw it. Honestly, I think I just couldn't deal with it. I told myself there was NO way this was happening again. It was just some other weird thing. 

But it isn't. I know it. It looks exactly like the very first growth that appeared that summer in 2021. I just can't believe it. I mean, how can this be? ARE YOU FUCKING KIDDING ME?! Can this girl catch a break, please? OMG! I just don't know how much more we can ask of Harlie and her skin, which has been cut so, so many times. Too many times! Under her jaw is all scar tissue at this point. 

I am feeling so overwhelmed right now. I just don't know how we are going to do this again. I don't. It is too much. I'm telling you - it is TOO much. I just can't even think about them having to replace her TMJ, AGAIN. I do not ever want to return to Boston Children's Hospital. No offense to BCH, but I am so done going up there. If I had known at the beginning that we would STILL be going up there 12 years later, I don't think I would have ever started. 

I just want to say that going out in public (or a baby shower to celebrate someone I love) while I'm trying to process heavy shit is so fucking hard - and it is getting harder. It is like I have a bucket of water and everything is fine until it fills up too much, and then it starts to spill over, unpredictably. I want to emphasize that word, because I go out with full intention of being able to keep my damn water in the freaking bucket! So, instead of being like, yes, the food is so good, your hair is looking fabulous, I love your sweater, etc. I'm like Harlie's infection is back, I shouldn't have brought her, she can't hear a thing in this loud room and no one can hear her so she's just sitting there and she can't play these shower games and my heart is breaking into a million pieces.  Like, I'm carrying it and it is fine until I bump something then I spill water everywhere and then, I'm like, oh shit, sorry I got my water all over you at this baby shower. Then, after I get home I think about it and I feel terrible that I spilled the water and I beat myself up that I wasn't stronger to keep my water it in the bucket. 😑 Luckily, I was with great people and I know they are okay with me spilling my water on them. But, I still feel terrible about it all. I want to keep my water in the bucket. This is one thing I'm working on with my therapist - being kinder to myself. I am totally fine if my loved ones accidentally spill their water. I shouldn't have different rules for myself. These are all the thoughts that run through my head, on repeat, and it is exhausting. 

Anyway, it took me to the 24th for me to email her ID doc and send her pictures. Not that she needed to see them, really. I mean, they look exactly like what she's seen before. Anyway, she emailed me right back and called in a script for Doxy. We scheduled a zoom meeting for the 26th (Dr. Hahn is in DC). 

Ugh. I just can't. On the 26th, I noticed that I had not heard anything from CVS (she called it in on the 24th), so I called. Fifteen minutes later I get someone on the phone. They only have two bottles of Doxy and they don't know when they are getting more. "Its on order" she said. I've heard that before. She told me that a different CVS has four bottles and another one has six. I just can't do this again. 

Another update I don't think I've talked about is how we had to start a beta blocker for Harlie's heart issue that came up since August or so. It was an issue in Boston that bought her a longer stay in the hospital. Anyway, it is a compounded medication, which requires us to go to a specialty pharmacy (not CVS). So, I suppose if I'm already going to a different pharmacy, maybe I should send the Doxy there. So, I call and a REAL PERSON answers the phone! He said they have to order it and would have it the next day. Also he said they will try to make sure that they have it when she needs a refill each month. So, I sent an email to her doctor asking her to send the script there instead of CVS. While I am certainly NOT happy, I do feel better about not having to deal with CVS regarding this particular medication. 

Also, on the 24th, I was at work. I missed a call and I recognized the number, but couldn't remember why. Then I got an email message to call the nurse at Harlie's school. Ugh. I know it sounds crazy, but for a few seconds I sort of panic. I mean, it's a "controlled" panic, in that I don't think anyone would be able to look at me and know that I'm freaking out on the inside. But, I was. The school nurse put Harlie's nurse on the phone and she told me that Harlie was having some shortness of breath, (or labored breathing? I can't remember) a scratchy throat and increased secretions. But, her sats were good and she didn't have a fever. She said they had been sitting in the clinic for a few minutes and she seemed fine and she said she wanted to go back to class. So, they did. 

But, when she got home, her voice sounded really strained and she didn't look like herself. She ended up staying home Thursday and Friday. I can't believe it took this long to get to her. Crazy. Seems like we aren't even giving it to each other. There are days in between one feeling better and one feeling bad.

We had our zoom meeting on Friday. I like this doctor so much. I guess if you're going through something crappy, it is really nice to have good people in your corner. She asked me when I first noticed the abscess, and I had to admit that it took me several days to let her know. I just knew there was no denying it once I told her. She said she got it, which is one of the reasons why I like her so much. I wasn't able to actually start her on Doxy until the 27th. She said that I need to check in with her in two weeks. Hopefully the abscess will respond. I'm not even going to talk about what we do if it doesn't respond. We'll have to cross that bridge when we get there. 

Since January has been so crappy, I haven't taken any pictures. Well, except of the dogs. They are always cute, no matter what is going on in this crazy house. So, here's Mabel, since it has been a while.

That's my blanket she's stealing, by the way.

Mabel staring down a squirrel.

As always, thanks for reading! 

Much love,

Christy xo

January 2024 Update

Hi. I've started this post several times. I get overwhelmed and put it down. I mean, if I get overwhelmed, how the heck are you going to feel when I try to update you?

Here's the short version - I'm struggling. I don't know why this is so hard for me to share. I mean, it shouldn't be surprising and I would never think badly if/when someone in my shoes is dealing with this. But, I have caregiver burnout. 

There. I said it. Life is really difficult right now. I wish I could be more positive. I wish I could share my life without feeling like I'm complaining. I have tried really hard to hold on to being grateful, positive, optimistic (I'm wearing a shirt that says "optimistic" on it right now!), hopeful, etc. for the last 17 years. I've wanted those feelings to be bigger than my anger, sadness, disappointment, grief, etc. But, I'm losing my grip and it feels like my anger and grief are starting to take over.  I'm at the point where things that should sound like fun - feel like work to me. I just don't have the energy. When it comes down to it, there are things I have to do, regardless of how much energy I have (Harlie's care, making appointments, taking her to appointments, managing supplies, equipment, etc.) so in order to reserve energy, the fun stuff has to go. There's just not enough energy left over for it. 

If you've been reading my blog since 2018 (the "bad" year) then you wouldn't be surprised to hear that I started to see a grief therapist that year. After we had some too close calls with Harlie in 2017 and 2018, I had several friends give me the same therapist's name (and I didn't even ask, haha!). So, I called her in the spring of 2018 and started seeing her. I've been going to her every now and then ever since. I took a long break, but this past November, Tom said I should go see her again. He said he was going to call her if I didn't. So, I did. She's been really helpful. She sent me this image and it is exactly how I've been feeling. Well, maybe adjust some of those labels, but you get the idea. 

I think most people think of grief when it comes to the loss of someone. But, with a child like Harlie, there are many losses over the course of her life. Plus, there's anticipatory grief, because we know that her body will struggle more as time moves on. Of course, the holidays didn't help. Harlie's surgery in October (while it looked short and easy to most, it kicked my ass), planning the We Heart Harlie & Friends Turkey Trot in November, Thanksgiving, Christmas then New Year's - whew! Too much going. Too much planning. Too much doing. Too much eating. Too much drinking. It was all too much. Plus, every New Year's there are so many Happy New Year's! Yay! Looking forward to a great 2024! 

Then there's me, saying with trepidation, Yea, um Happy New Year??? 😬 I mean, I just don't know what the year is going to bring. I'm way more suspicious than excited about 2024. Plus, I knew I wasn't feeling great by New Year's Eve (meaning I could feel a sickness coming on). I couldn't even enjoy a full glass of wine or bourbon (gasp!) and barely made it past midnight. A group of us did the stairs on New Year's morning. The stairs are in a park and I think it is 140 stairs or something and we just walk up and down until our legs shake. Tom did 24 sets in honor of 2024. I decided to honor 2016. Haha! Honestly, that was probably one of our best years. Harlie didn't have a trach then. Oh, the memories can be so pleasant and so painful at the same time. 

Anyway, after that my body was like, nope! I clearly pushed it too far and ended up very sick. I was down for the next nine days. It really sucked because the kids were home from school the first week of January. I couldn't do anything. Poor Harlie. She knew to keep her distance from me. So she stayed in her room the entire week! I barely took care of her. It was awful. I couldn't order her supplies. I think I was only able to wash her hair one time - and I couldn't blow her hair dry at all. I think she gave herself most of her meds. I had to get Murphy to help me with the morning dose when he was here. 

We are having a lot of trouble with Harlie's power chair. The battery struggles to keep a charge. So many times she goes to use it (after charging) and it indicates that the battery is dying. Like on Halloween. We charged it, then we unplugged it and turned it on, and there was only one light. So, we couldn't use it that night. So frustrating when that chair is like her legs. Imagine not being able to walk when you were planning (and looking forward) to taking a walk? Anyway, we scheduled an appointment to have them take a look at it and that was scheduled for Jan. 2nd. There was NO way I could go. So, Murphy took her chair for me. He is so incredibly helpful sometimes. I know community college isn't the most popular - but it sure has it's advantages and I love having him home with us. Anyway, they ordered a new battery. Who knows when that will come in. 

I finally was able to go back to work on the 10th. Then, on the 15th, Tom got sick. I don't know what I had (never tested for anything). Tom thinks he had the flu. I don't think I had the flu. Anyway, he missed a whole week of work, which has never happened! 

We had tickets to see Annie the Musical on the 17th. Since Tom couldn't go, I asked Caylee if she wanted to go with us. She did and we had a great time! Murphy and his girlfriend went on the 16th. Tickets were one of his Christmas gifts to her. Me, Caylee, Harlie and Cooper went on the 17th. None of us had ever seen it before. Tom got us great tickets. He went to the theater in person and talked to someone to help find us the best tickets for Harlie during the week Annie was showing. Since we have her chair, I didn't want to have to deal with elevators or getting there and not having a place to put her chair. They were so helpful and put us in a great spot! This is exactly what I was talking about earlier in this post! Going to Annie sounds like fun - but add in the logistical stuff about parking and seating, taking elevators in the parking garage, taking elevators in the venue - ugh! It just really takes energy away from having fun. Tom handles all that logistical crap and when he is driving I don't have to worry about it. So, him not going was a total bummer and changed things for me for sure. 

But, I have to say, parking was surprisingly great! That garage has lots of handicap parking all together on the first level, so we didn't have to take an elevator (what a life changer!). Then we didn't have to take an elevator inside the venue, either. Plus, someone called us over to a different entrance and we walked right in and it was just great. Really, what a pleasant surprise! Harlie said she loved it, so now that I know we can make it work, we'll definitely take her again. I guess you can tell I have some sort of PTSD about elevators. I think it comes from the children's hospitals where we would wait for an elevator and then people would just jump in ahead of us and fill it up and we'd have to wait for the next one. That literally happened so many times. Even when we were going to the ER at VCU. Sometimes people really suck.

On the 20th, Harlie and I went to Caylee's baby shower. She is due in mid-March. I have more I want to share about this particular day that will shed more light into my current struggles. But, I'll go into that in my next post. I know I've said that before, and then went silent for several months. But, I'm really hoping that won't happen this time. 

Harlie, Caylee and me.

Patti, Melanie, Caylee, me and Harlie

Then on the 24th, Harlie got sick. I am so grateful for how well she can handle a sickness now. She is a true champ! She had some upper respiratory thing, but it didn't progress into something worse. However, by the night of the 26th - I was sick, again! Ugh! Can you believe it? I was so miserable on Saturday the 27th. Not only did I feel bad, but I was just feeling so sorry for myself. Tom had plans to go hiking that day. While I wanted him to go because I know it is good for his mental wellness, I also didn't want to be alone with Harlie all day. I also had to go pick up a prescription for her (that's a whole other story that I will tell you about soon). Luckily, Sandy (my sister) called and I told her how miserable I was and that I didn't want to go out of the house. So her and Rick (her husband) went and picked it up for me and brought it to me. 

I'm feeling better, but still pretty tired. I guess I'm just especially run down. So run down that I couldn't go to Cooper's One Act play at school on the 29th. I feel terrible about missing him on stage. But, I just couldn't go. Plus, Harlie had a big appointment the next morning and I had to reserve enough energy for that because if I can't take her then she can't go. At least Tom and Murphy could watch Cooper at his play. Harlie's appointment on the 30th ended up being a pretty bad experience. I'll explain soon. 

Now, today is the 31st. I got her up this morning and gave her a bath. During the bath I could just tell she wasn't feeling well. It is so funny how there are such small, subtle signs that I couldn't even really explain to someone else that tells me she isn't feeling good. She is good about telling me when she doesn't want to go to school. I mean, she always WANTS to go to school. On Monday I asked her and she said, "It's worth a shot!" Haha! So, when I asked her this morning, she said, "I don't know." Okay, well you're staying home then. Maybe she is feeling as run down in life as I am. Honestly, it has been a rough year (from Jan 2023 to Jan 2024, I mean). Well, I suppose it has been a rough year for 2024, too! 

Maybe February will be better. Not holding my breath of course. I am really hoping we can be done with sickness for a while. 

I have a couple of other big(ish) things I want to share, which will also help explain why I'm feeling the way I'm feeling. I'm hoping to focus a post on each one, to make it less overwhelming. Hopefully I'll get to that very soon. Might even be tomorrow if Harlie stays home from school again. For now, I just had to get some things out. I was feeling like I was keeping a dark, scary secret. Which is probably ridiculous as most who know me are probably thinking Duh!

Okay, as always, thanks for reading! And for those of you that I don't know personally, but have commented - I really want to say thank you for all you said! It is amazing to think you are reading this and cheering us on. There are days when I think no one wants to hear my heavy stuff. But then I read one of your comments and I feel like you do want to hear my heavy stuff. Haha! People want to be heard and want to feel like people care - and you did that for me! So, thank you from the bottom of my heart. 

Much love,

Christy xo

We're going to be okay. I think.

Hi, 

Well, my temper tantrum is over. I feel better now. Haha! Thanks for listening, and thank you for all your comments and messages of love and support! I can't tell you how much you help me through the hard times! 

On Wednesday afternoon, October 18 (after I posted my blog) Harlie's speech therapist came by to visit. It was such a fun visit! Harlie and her talked about the class and Harlie's classmates and I feel like I got a better picture of her interactions with them. For example, one of her classmates calls her "little and cute" and Harlie is not a fan. She does not like to be called that. Of course, I was like 😬 because she IS little and cute. Haha! Gotta remember to keep that to myself. Harlie said that one of them is obsessed with her. I looked at her speech therapist and she said, "that's true." 

So, I think Harlie feels liked/loved in school. That clearly looks different than what I would need to feel liked/loved. I'm afraid it will always make me sad that Harlie doesn't have traditional friendships. I need to figure out a way to be okay with how different Harlie's life is compared to what I would like it to be. She's never going to be free from her medical stuff or "healthy" as the general population goes. I mean, how does a parent learn to be okay with her child NOT being healthy - like EVER? Isn't that the first thing you want when expecting a baby? There are a lot of losses when you have a child that can't breathe, eat, speak, etc. without major assistance - or can't do it with all the assistance in the world! 

For so many years we went to all the therapies - trying to get Harlie to a better functional place. Now, at 17 years old, we don't go to any. Whatever she gets, she gets in school. That's it. At some point, we have to come to a place of acceptance, and that is HARD. I had to have a conversation about that with Harlie just the other day about her learning to eat. I think she needs to come to a place of acceptance. But, I can't do that for her. It's hard. Now I'm not just dealing with my grief, or Tom's, we are dealing with hers, too. 

On Thursday afternoon (the 19th), Harlie's teacher dropped off cards that her classmates made for her. Harlie enjoyed reading and looking at those. Harlie is in exceptional education classes, except when she is in her elective class. So, when I refer to her classmates, I'm talking about her exceptional education classmates. So, don't picture her in a typical 10th grade classroom.

Thursday was a beautiful day, so I asked Harlie if she wanted to sit on the back deck for a little while. I got out the cushions, cleaned the deck up, put water in the bird baths and we hung outside. Murphy came home from class and joined us. I loved it. It really is the little things in life that make me happy.

That evening, Caylee and I started to remove her sutures. She has four incisions and we removed the sutures from two of them without any problem. They were the ones in front of her ears. We started to remove the sutures from her right side jaw line, when it looked like the skin was opening up more than we were comfortable with, so we stopped. I had to "chuckle" at me pulling the sutures tight and watching her skin close as Caylee tied a knot. Oh, the things we do that are so not normal parent things. We decided to give them one more day. I was so afraid that her jaw was going to open up and get infected. So, I texted Dr. Strauss (a plastic surgeon here - he took her into the OR way back during her bleeding incident after she got the TMJs put in the first time in April 2021) and asked him if he could take a look at her. He told me to bring her in the next morning. So, I did. He removed the rest of the sutures and said that her incisions look great.  Whew! He actually said that she looked GREAT for being 10 days post-op from that surgery. 

On Saturday night, the 21st, Rooney had a rough night. He just looked like he was in distress. He was walking hunched over with his tail down. I felt so bad for him, so I went to give him one of his favorite treats. He put it in his mouth, then spit it out and went and kind of gagged. Um, that is NOT okay. He's NEVER turned down any food - ever. So, I tried peanut butter. He walked away. WHAT? We really debated taking him to the emergency vet. He did not look good at all. Tom said that at dinner he tried to give him a piece of steak/fat, and Rooney wouldn't eat it. Tom felt so bad for him that he let him sleep with us that night. I was so worried about him! But, we just got back from Boston where we just spent several thousand dollars - we just don't have the money for an emergency vet appointment where we go in not knowing what could be wrong. Plus, he did eat dinner. So, I told myself to calm down and wait and see what he did with breakfast. 

Sunday, the 22nd: He ate breakfast okay. Tom had to put his food on the food mat instead of in the bowl because he was having a hard time getting it out of the bowl. Something seemed wrong with his tongue. Pug-o-ween was that afternoon and Harlie's costume really needed both Pugs. Tom built a barn door for the basket on her chair. The dogs were chickens in a chicken coop and Harlie was a farmer. I felt bad taking Rooney if he wasn't feeling good. He's 11, just in case you were wondering. Since he ate, and didn't seem as bad as the night before, we thought that maybe it would be a good distraction for him to go. So, we took him. It perked him up! He had a great time and was very social. His tail has been well curled ever since. He's back to eating treats and he looks good. I have no idea what came over him that night. But, for now, crisis averted. Thank God. I did NOT want to deal with that right now. 

We met another chicken, haha! 

The surprise of the day was that Rooney won the ice cream eating contest - 2nd year in a row! We couldn't believe it after the crummy night he had the night before! So crazy! He found his spunk surrounded by other Pugs. Haha! We have to figure out a way to get him to the regular Pug meet ups. 

I'm going to stop now and start a new post for the next week, since Harlie had a couple of appointments. 

Much love!

Christy xo

Home and recovering

Hi,

Well, we are home. We drove home on Saturday. It rained the entire drive. Luckily, the traffic was pretty good, so that was a blessing. I always think Connecticut has the worst traffic. It was definitely the heaviest leg of the trip. While there, we were in the left lane just a couple cars behind a Uhaul truck that was in the right lane. He stopped short of an overpass because he didn't think he could fit under it. The under part of the bridge was kind of arch shaped, so his best bet would've been to go under the middle, which would've put him in both lanes. We have no idea what happened, because we passed him right as he was stopping. Thank God! I was thinking, we are SO lucky! Haha! I crack myself up. 

We left at 2:45pm and got home at 12:30am. Not too bad for a rainy trip with only two stops. Harlie is a champ traveler! At one stop we were standing in line in the restroom and all the ladies turned to me and said they wanted her to go before them. Ugh. It was such a sweet gesture, I almost started to cry. You can tell when people are kind. They were looking at me and I could feel their empathy. As we were leaving one of them said, "I hope she feels better soon." So kind. 

As far as how she's doing, she is of course, happy to be home. But, it is hard. Because of the swelling, she can't wear her hearing aid in her right ear. Swelling also makes it really difficult to understand what she's saying. She's had some facial paralysis for years. Anytime you undergo reconstruction in the jaw/face, especially in a kid with an asymmetrical craniofacial syndrome, there is a risk of damaging facial muscles.  The left side of her mouth doesn't turn up like the right side. So, every time she is recovering and can't move her mouth, I am nervous. She asked me yesterday when she will be able to do her "angry face" then she tried so I could see how she looks. Even during recovery, that girl cracks me up. I hope she gets back what she had and didn't lose more. Time will tell. 

She definitely looks different. This has happened every time she's had craniofacial surgery. I've talked about it before - but this is very hard. We have loved every one of her faces. But, it seems cruel to keep changing them. She said the other day that she looks like Frankenstein. You'd understand why she says that if you could see her incisions. I'm tempted to post some pics, but I'm afraid they might be too much for most of you. Plus, Blogger has been really weird lately and keeps taking down some of my old posts for "breaking community guidelines." I think that's pretty funny considering this is our life and it is too hard for community guidelines. Tell me about it, people. But, we don't have a choice - we have to live it even if it is too hard for others to simply hear about it. 

She also asked me why she was born this way. Ugh - that WHY question. I really try hard to not ask why. There is no answer. We'll drive ourselves crazy trying to figure that out. Anyway, I told her that we don't know why. It is just the way God made you and we love you just the way you are. Then she started to cry those big silent tears. 

This is when I get worried about her being on Instagram, where she sees girls her age, looking very different than her, doing very different things. It was bad timing that on her way home she saw tons of photos of girls her age going to homecoming. Other girls grow up into young women, then women. They have friends, they date, they get married, etc. But, Harlie is frozen in fucking size 10 clothes. Do you know how hard it is to find age appropriate clothes in the children's department? No girl her age shops in the same department as her. Not to mention that her body isn't shaped like a typical girl who wears size 10 clothes. I don't know if it because of the pulmonary hypertension, the lobectomy, or the four open heart surgeries where they had to break her sternum  (probably a combination of all) but her rib cage is really wide. So dresses that zip up the back have to be bigger in the chest, but then they are too big in her shoulders and length. Well, she's 4'4" so the length on most things are a challenge. 

She has girls from her school (or ones she went to school with in the past) follow her on Instagram. I can't help but notice that all of the comments on her posts are from my friends and family. Thank you for all you say, by the way! I don't recall ever seeing a comment from a person her age. I get texts and comments all the time from people asking how we are doing, telling us they love us and are thinking of us. She's missed two weeks of school - and not one kid has messaged her telling her they miss seeing her at school or are thinking about her. Is it really that hard for a high schooler to think that they would want to know people care about them if they were going through something really hard and painful? Why did they want to follow her on Instagram anyway? What is the point? This KILLS me because my friends mean so much to me. This is a lonely life when you have friends who love you. What is it like when you don't? 

Yesterday I was feeling particularly sad and mad about it all. I am afraid that this surgery tipped the scales and put us into the THIS IS TOO FUCKING MUCH category. I mean, come on! She's had well over 100 surgeries! We are all so tired of doing this over and over again. We go so low and eventually we bounce back. But I'm not feeling so bouncy this time around. Then, Harlie's afternoon bus driver called. He told me that he was calling to check on Harlie and that he and the aide on his bus miss her every day. I couldn't help but cry. Wow. What a difference that short phone call made! It isn't really that hard to make someone else feel loved and feel like they matter. He made my day, too, because as a parent, don't we want our children's lives to matter?! They miss her! How great is that? Her nurse that goes to school with her misses her, too. Edited to add that I heard from her special education teacher yesterday afternoon and they miss her in class and her classmates made her cards. She will love that. 

I don't like feeling angry. I'm always kind of sad. I'm feeling it, even when I don't show you. I guess that's grief for you. So, the sadness, I am "fine" with - the anger though - that's tough. A friend called me shortly after the bus driver called. I was dealing with so many emotions at the time. The kindness of that phone call just broke the dam. I hate sharing the anger. I don't know why. But, it is definitely a part of our life. Heck, it is a part of everyone's life. Anyway, B got an earful, that's for sure. Haha! Thanks, B!

Anyway, I have been very busy taking care of her and trying to get all her meds and follow up doctor's appointments straight. The medication that the cardiologist put her on in Boston isn't something I can give her. He called it in to our local CVS and our friend Craig went and picked up her scripts so we would have them Sunday morning. He also went to the grocery store and got us some stuff so we wouldn't have to on Sunday. He also got me some flowers! So nice! Thanks, Craig! 

Anyway, when I went to give her the medication (for her non sustained ventricular tachycardia - NSVTs, which can be very dangerous, by the way) I noticed that it was written to give her one tablet by mouth per day. The directions say "do not chew or crush before swallowing." Um, yeah, that's not going to work. She cannot swallow any pills. So, I messaged her electrophysiologist (EP) in DC. She has to put her on something else that can be compounded into a liquid. So, I had to find a pharmacy that compounds and takes Harlie's Medicaid. It is Wednesday and we still haven't resolved this issue. I can't help but feel afraid. I mean, what if she gets another NSVT and it is bad, while we are waiting on the meds? 

When we got home it was overdue for me to order her monthly supplies. I have PTSD about her supplies/equipment because during (and after) Covid supplies became SO hard to get. All that bullshit about "protect the vulnerable" was hard to swallow when you have a medically fragile child who REQUIRES certain supplies and equipment to remain alive and well - but you couldn't get them. Every single month, I was told about something that was unavailable, back ordered or no longer covered by Medicaid. 

I just want to say right here that I would not need any of this crap if she were healthy. I don't WANT any of it. None of it makes me happy. So, I sat down to fill out the monthly spreadsheet. I did it and emailed it. I received an email back that I would be receiving a new spreadsheet to use starting next month. It said the new spreadsheet is MANDATORY. For each item I order I have to state the REASON WHY in the JUSTIFICATION column. Are you kidding me? If the sheet isn't filled out correctly, they will send it back. They also want us to fill in a column that asks for how many of that particular item we have ON HAND.  

In order for Harlie to go on Medicaid - we had to go through a bunch of medical paperwork. There are tons of doctor's orders (there has to be an order for every single thing). We had to do a big update a couple of years ago where a person had to come into my home and we had to fill out a huge amount of paperwork and he asked me a million questions. He was here for several hours. We get phone calls and we have to see our case manager on a regular basis. Our case manager is always changing and I currently have no idea who it is. Someone called just the other day and she said she was calling for our case manager? Okay. So, I took the opportunity to tell her I need cotton swabs to do wound care. But Medicaid stopped providing them. If I don't do proper wound care, it could get infected and she would need to be hospitalized. I think it makes sense to cover the fucking cotton swabs. I'm not going to get the cotton swabs. I have to complete paperwork every year. She is seen by a million doctors a million times a year. But, I have to JUSTIFY SINGLE THING I ORDER?! What the actual fuck? Is there a scandal of people wanting trachs, but not actually needing them? Have people lied and cheated through all that paperwork, doctor's orders and home visits to get to this point and that justification column will be just the thing to discover them? Are people reselling saline bullets on the internet? Split gauze? Heated circuit wires? Humidification water? Suction canisters? Suction tubing? Suction catheters? G-tubes? Trach ties? Feeding tubes? I mean COME ON! For 99% of this stuff, we cannot buy them on our own. If we can purchase them, they are SUPER expensive, so it isn't reasonable for us to commit to purchasing things like trachs. This is why Harlie is on Medicaid. I'll never forget the company coming to our house with our first shipment of supplies and equipment. He set it all up and taught us how to use everything (this had to be done before we brought her home, obviously). He told us that it cost like $7,000 per month to have this stuff. That was 17 years ago. Imagine what it is now. Anyway, I think whoever is coming up with these rules is just trying to break us. How can we make their lives harder??? I mean, no parent wants to do what they have to do, but let's see how far we can take them until they snap. Insert evil laugh here. 

I can't help but be perplexed by the juxtaposition of the abortion debate to hospitals bragging about saving 24 week babies, only to send these babies (and babies with other life threatening conditions) home to families that will struggle for the rest of their lives to get the supplies and support they need to keep them alive. Good luck families! At least one of you parents will have to quit your job and work tirelessly to find nursing, supplies, equipment, appropriate education, etc. Of course they don't tell you that. You have to figure that out yourself. 

Yeah, I'm pretty angry. The supplies justification really got to me. I want to say fuck you. Come to my house. You do her wound care. You see what she needs and what she doesn't. The thought that I could want any of this really pisses me off. Honestly, it is easier to get illicit drugs than to get the supplies that doctor's have ordered for medical issues that are clearly documented. Okay, I don't really know that for a fact. I don't get or use illicit drugs. It just feels that there are more hurdles for me to jump to get what my child needs to keep her airway open and clear and nutrition in her body. I mean, I bet I could get drugs easier than I could get a trach. Or cotton swabs. Okay, fine, that's not true for cotton swabs. The hospital gave me a whole box last week. Shhh, don't tell anyone though, I don't want them to get in trouble. Then the next poor family won't get the cotton swabs they need. 

Okay, I need to stop writing, I have shit to do and wounds to clean. I hate to leave you on a negative note, though. So, yes, this has been really hard. It isn't fair what she must do to survive. I hate saying that, too. But, after 100+ surgeries and 17 years, it is true. Yesterday morning when I went into her room - I always ask her how she slept - she told me that she couldn't sleep because she hurt too bad. Ugh. Break my heart! I told her she can always wake us up and tell us! Ugh! That girl just knows how to suffer and does it without question. 

Yesterday, I got her a new puzzle and that enticed her to come downstairs. She did the whole puzzle in one sitting (took her a couple of hours). That's the most she's been downstairs. Her being downstairs is kind of a gauge in how she's doing. If she stays in her room, she isn't feeling good or is really tired. So, maybe that's progress. 

I also got her more pajamas. Ugh - trying whatever I can to make her feel good. I mean, look at our beautiful girl...💗

I think her swelling is starting to go down. Thank God. I feel like she is starting to look like herself again! What a relief!

I mean, who wouldn't want to look at these smiling faces? 😊

Okay, thanks for listening/reading, commenting on my posts, whatever you do for us, we appreciate.

Much love,

Christy xo 

Post-Op Day 4 (TMJ Replacement)

 Hi! The day is going pretty well, I think. Plastics came and cleaned her incisions. She wasn't happy about that at all, of course.  

I heard that her blood pressures are still not at baseline. She's hydrated now and still not on Enalapril, so I guess hydration wasn't the easy answer. The cardiologist that we've known for years here came by and it was like he came in with a cape on. Haha! He said he heard about what happened, he apologized and said he was going to get to the bottom of everything. Woohoo! He reached out to her EP at CNMC (in DC) and hopefully they will connect. It is Saturday, after all. I pulled up some clinical notes from August and he saw that she had a run of NSVT (non sustained ventricular tachycardia) in August. So, we know of at least two incidents of it. I don't know what that means, exactly. I mean, I know what NSVT is and that it can be dangerous, but I don't know at what point I have to worry or what they can do about it. 

For now, he said that it won't keep her here. They are not going to restart her Enalapril. We will have to follow up with her cardiologist at home soon about that. 

He said he was able to reach her EP in DC and they had a conversation. I'm pretty impressed considering it is Saturday. At any rate, they decided to put her on an additional medication for the NSVT. A beta blocker, I believe is what he said. Still going to hold her Enalapril. So, they called in the extra antibiotic and some pain meds and we were able to get her discharged. Yay! She helped take off the tape from her IVs. 

Despite the horrible day yesterday, I am thankful for the nurse we had today and yesterday and for her cardiologist coming to our rescue today. Not ideal to start a long drive at 3pm, but beggars can't be choosers, I suppose. I went to Target the other day and got her a new pair of pjs for the trip home. I know it is hard to tell, but I do think Harlie is happy to be on the way home. The swelling is preventing her from being able to move her facial muscles. 

Maybe it will be better to travel on a Saturday anyway. Already the trip is supposed to be shorter than when we checked yesterday. 

Thank you for all the love and support! It is so hard to be so far away from our family and friends - but all your comments and messages really make a difference! Thank you!

Much love!

Christy xo