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

Post-Op Day 3 (TMJ Replacement)

 Hi. This morning Tom took an Uber to the airport to go pick up our rental minivan. I walked to the hospital. Harlie was asleep when I got here. The nurse came in and said, "Has anyone talked to you yet?" Um, no. That sounds a bit ominous. She went on to tell me that Harlie had an 18-beat of ventricular tachycardia at 3:30am. They did an EKG. They didn't call us because they didn't want to wake us up to tell us that she was "fine." But, electrophysiology (EP/pacemaker docs) need to weigh in before they will discharge her. Also, her blood pressure has been lower than her normally already low blood pressures since the vtach event. 

In the grand scope of Harlie, her heart has really been the least of her problems. We have been very thankful, since we've really had to focus on other things. But, we know that her heart is not "fine" long term. We've always known that one day her heart will become more of an issue that we will have to face. 

That's kind of happened with her pacemaker wire going bad. She got her new pacemaker generator in May of 2022. She got her first pacemaker generator at 5 years old. So, that generator lasted about 10 years. The generator is the battery, basically. The more the pacemaker is used, the more it uses the battery, the faster it gets drained. I think they told me that based on her current usage, she has about 4 more years of battery. She's had this battery for 1.5 years. I don't think the wire is going to last 4 more years, based on what they've been telling me. So, they will replace the wires and the generator next time. Ugh. Next time.

Anyway, all this to say that I am always kind of anticipating the beginning of her heart problems. Is this it? Or not? UGH! Not to mention the slap in the face we are feeling walking in here thinking we would be on the road by noon, to find out we have this whole new issue. 

An EP resident just came by and said that we are waiting for one the docs in charge to come check out her pacemaker. He said that they have a lot of patients. 😑 No problem. We just have about a 10 hour drive in front of us. 

Still waiting...

11:30am, Plastics just came by and said they want a CT scan. They said it can be done outpatient. But, that is way easier said than done. That is a mountain that I don't want to climb. It would be way easier to just get it done now, while we are waiting anyway. Honestly, things aren't looking good for discharge today. 

We currently have no hotel room for tonight. We have a rental car that is due in Richmond tomorrow morning. There are no flights available tomorrow. I am worried about Harlie. Cooper has his first homecoming dance tomorrow night. Harlie is oozing a little from her incisions and plastics is like, "looks good, a little oozing is normal." But, my brain is remembering that we left here one time when all looked good and she bled like crazy after we left. I don't feel any comfort and my stomach is in knots and I'm waiting for the other shoe to drop. We don't even know if they will let her go home today, regardless.

Harlie just told me that her vision is blurry. Ugh.

We can extend the car, I believe. We'll have to find a hotel room for tonight. Or, if they will do a late discharge, we get on the road late this afternoon. I don't know. I'll update when I know more. 

1:30pm, Just had her CT scan. EP docs came and adjusted her pacemaker. They changed her low heart rate from 60 to 70. So, her pacemaker will keep her from going below 70 now. I think we just need cardiology to let us know if we can resume one of her heart meds and if they will let us go home. If they say we can go, we are just going to get on the road asap. 

Deep breaths.... today has been crazy. I've seen a lot of conversations happening outside her door. I am not very forceful, but I made myself go out there and I asked if they were talking about Harlie. When they said yes, I asked if I could be helpful. 

Here's a basic summary...

They should've called us to let us know that there was an event that could potentially alter discharge plans. That would have avoided us giving up our hotel room and incurring costs by ubering to the airport and committing to the rental car (and now having to store/park it, which is super expensive). We used points to rent it for 24 hours - not realizing that we would have it for DAYS.

When we come into a hospital for one specialty (Plastics) it has been difficult to manage who is the lead, where she goes in the hospital, etc. For example, when we go to Children's National in DC, she goes to the cardiac unit - and they make whatever specialty come to the cardiac unit to see her. They "protect" their cardiac kids by wanting to be responsible for them. At other hospitals, it doesn't work like that. In the past (like every time, which has been a lot considering we've been coming here for 11 years now) since she enters under Plastics, they want to send her to the Medical/surgical unit. Makes sense, except those nurses and doctors don't understand her heart issues. For example, she has a Fontan circulation, and she shouldn't ever get dehydrated. A med/surgical nurse probably has no idea! Plus, the monitors show her heart craziness, and they don't like it. So the nurses don't like it. Then they spend a lot of time on the phone with the cardiac unit, until everyone gets over it, then they transfer her to the cardiac unit. I know this because it has literally happened every single time. Seems like a bunch of unnecessary energy, so I try to tell them this every time we come here. But, they look at me like I'm freaking crazy. 

Even once we are in the cardiac unit (for non cardiac issues) they treat her like - oh, no big deal, she's not here for cardiac issues - so move along to more critical patients. It leaves me feeling like we don't belong anywhere. She is a complex patient - and she's being treated like she was here for something routine, which can be dangerous.  

We are on Day freaking 3 - and today I asked the nurse and a person I had never seen before if they were discussing Harlie. Turns out this doctor had no idea we were here! Um, we weren't hiding. If she had known, she would've come to see us before. Well, we are actually IN a cardiac unit how would I know that no one knew we were here? WTH? By the way, WHO THE HELL ROUNDED ON HER YESTERDAY, THEN?! 

So, apparently she is IN the cardiac unit, but under Plastics. Um, okay, that's not unusual. However, during rounds yesterday there was no one from plastics, so what the hell? How was I supposed to know that there was no one in cardiology on her service?  

I'm pretty sure that despite the fact I was told that they were keeping track of her Ins and Outs, that she has numerous working IVs, and that she has a g-tube, they let her get dehydrated. The glorious thing about a g-tube is that we have the power to control that. Dehydration would explain her low blood pressures. Plus, she hasn't been herself at all - hard to tell exact cause(s) since she's miserable from surgery, in pain, on Oxy, and in general over all of this. But, if she's dehydrated, she would feel terrible, too. Today I took her to the bathroom and in my opinion her urine looked too dark  - so I tubed her some water. That made me ask her nurse if they have been giving her her water flushes (four ounces of water, three times per day). Nope. They have not been giving her water. How is that possible? How do you let a cardiac patient not get any fluids?

Finally, late in the afternoon, we were told that they aren't comfortable sending her home until they figure out this lower than normal blood pressure. They held one of her heart medications that she's been on her whole life. You can't just do that and be like, okay, new normal - without some checks. Plus, at 3pm she refused her tube feeding and that is a major red flag - not tolerating feeds will buy you more time in a hospital for sure. So, she said they want to keep her at least another 24-48 hours! 

We don't want to push Harlie out of the hospital if she isn't ready to leave. Trust me. However, a little communication would've been way better. I just feel like we are vital members of her team, and we can't help if we think that cardiology is involved when they actually aren't. I try to think of ways that I can avoid this happening in the future and then I remember that I don't work here! 

Also, we don't understand how she's been trending lower than they are comfortable with blood pressures and it took ALL day for them to start IV fluids. All day!!! At this point, we HOPE that she was dehydrated, because that could be an easy fix. So, cross your fingers. 

A friend of ours came to our rescue and gave us her hotel points and made us reservations at the Courtyard Marriot for the next two nights. Thank God. Seriously, we can't that you enough! She's seriously the best. 

Tom started thinking through logistics and he said it would be our luck to turn in this minivan, to have to go rent one on Sunday, and since it is the weekend, they wouldn't have any available. This has happened to us in the past. We have a total memory of trying to find one the three of us could fit in. So, he said he was afraid to let it go. We looked at flights again - and tickets were $1,000 per ticket! So, we are just going to keep the car. Our nurse today is awesome and she felt really bad over what happened today, so she called social work to come see if they could help. They gave us parking at the hospital for three days (to park all day today at a children's hospital - parking was $50!!). So, we are going to keep the rental at the hospital, and hope like hell that we get to leave Sunday. 

At around 5pm we left to go check in to the hotel. We had our luggage in the van. In leaving the parking garage, Tom realized he left the parking ticket thing in his jacket, which was in Harlie's room, so the garage wouldn't let us out. Thank God there was no one behind us, so he backed up, out of the way and I jumped out and ran back up to her room to get it. I can't tell you how stressed we felt. All of it - the miscommunication, not being heard, worrying about Harlie, the boys, etc. I ran back to the car and we headed to the hotel. Poor Tom has to be a rock all the time and he was trying to get through hellacious traffic and pedestrian traffic, one way streets, etc., when he almost hit a pedestrian crossing in front of us. He was pissed and Tom said he was sorry - but that guy didn't care. Ugh! We just needed to turn things around and that felt totally impossible. 

We checked in to our hotel, then drove back to the hospital parking garage. Parked it, then walked to dinner. Now we are back in her room. She is complaining of pain and her jaw looks more swollen to me. She also has more bleeding/oozing. Ugh. 

It is now after 9pm and we need to get out of here and find a way to relax, regroup and get a better attitude. There's only so much we can control and being mad is not something I want to be longer than necessary. We have communicated our feelings here. Our nurse was so great today and she told me to keep doing what I'm doing. She will be back tomorrow, which is great. 

Again, I don't have time to proofread, so I'm sorry if I repeated myself, made mistakes, whatever. Today was just a really hard day. But, we have had plenty of them and lived to tell the tale. We are going to miss Cooper going to homecoming and we are sad about that. I feel so bad that we can't be the parents we want to be to the boys sometimes. But, they are so good and they go with the flow and tells us they are fine and that they love us. 😊 Hopefully, tomorrow will be a better day and that Harlie will start to feel a little bit better and that all these kinks are worked out. 

Thank you for all your support! Much love,

Christy xo

Post-Op Day 2 (TMJ Replacement)

Hi, Harlie had a "good" night last night. They said she slept all night long, which is great. She seems really unhappy and quiet this morning. They said they gave her Oxy earlier, so maybe that has something to do with it. We are shocked at the small amount of swelling and bruising. She looks "great" compared to the last time and this one he did more manipulation than the last time. Crazy! Must be that med - which has us wondering where the hell that med was for her last few surgeries? 

Plastics is supposed to come soon and remove the dressings from her incisions. It sounds like they are going to say we can take her home soon. We are hoping for tomorrow (which was the original "plan"). Tomorrow would be good because we only have our hotel room for tonight. They are at full capacity, so it isn't looking good for us to stay there tomorrow night if we can't leave tomorrow. We already checked another local hotel and the rate was over $500! Tom has been looking at flights and they are ridiculous! It would cost us $500 per person - and the times weren't really workable for being discharged from the hospital and getting to the airport and through security. So, we are going to rent a car and drive the 550 miles/10 hours. Tom has already driven 10,000+ miles since June. So, not ideal. But, we don't really have a choice. I don't know how people can afford to travel! 

On surgery day, we met another couple with a young child. They said they live in Idaho and have spent most of the last six months here in Boston for his medical care! He looked to be about one - so probably half his life! It just makes me sad that so many families have to live like this. Most people don't ever see them - but I promise you - there are so many of us! This is exactly how We Heart Harlie & Friends came to be. I know most people can't relate to our cause - once you have healthy children, you are unlikely to ever experience this kind of life. You lucky people! Haha! Anyway, if you're local and want to support us - you can sign up for the Turkey Trot here. There is an early bird discount (EB23) good through 10/15. 

Harlie has been super quiet so far today and seems pretty unhappy. I don't know if it is because she's just ticked about it all (totally understandable) or if it is the pain meds. Right now, she is sacked out and we are waiting for Dr. Resnick to come. So, I'll write more after that.

Dr. Resnick came by and tried to remove the dressings. Harlie was uncooperative. He told her she could take them off if she wanted. She didn't want to, but she did it anyway. The incisions (four of them) look good. There are lots of sutures, which will be so fun to remove. It is so crazy, Dr. Resnick was explaining to us after her surgery that there are layers of sutures. There are clear ones underneath, and they dissolve. The black ones on top need to come out in about eight or nine days. This came up because Caylee found a clear suture that was working it's way out just a few weeks ago. That was from her surgery in March. Even crazier - a suture came out of her trach stoma earlier this year. That suture was put there during her LTR in FEBRUARY of 2018!!! Isn't that nuts?! 

Anyway, looks like we are going to take her home tomorrow. So, that's great! After her dressings came off and we said goodbye to Dr. Resnick (I should've grabbed a pic of them together - but Harlie was less than thrilled) I got her up and did a little wash, brushed her hair, changed her trach (they put in a cuffed Bivona for surgery and even though it was uncuffed after, she was not a fan and asked me to put her normal Shiley in), and put on clean pjs. She looked like she felt a little better after. Then we took her for a little walk to some spots in the hospital.  

Oh, we talked about how she has WAY less bruising and swelling than last time - which is crazy considering this surgery was more work than the last one. I asked him about that med and he said she was on it last time, too. So, he doesn't really know why she looks better. Haha! We'll see how she looks tomorrow...

She took a nap and we went to lunch. I went to Target and got her a new pair of pjs for the trip home tomorrow. When we got back, we took her to the outdoor garden on the 12th floor. 

Then we stopped in the playroom and did a puzzle together.

She is definitely tired now. It is 7pm and I am getting hangry. So, I have to sign off and we have to go eat dinner. Please forgive typos, I don't have time to proofread right now. We have another very long day of traveling in front of us tomorrow. I feel so bad making Harlie travel so much on post-op day 3! Plus, I am so afraid that all that moving around is going to make her start to bleed. She had stopped bleeding in April 2021, but started to bleed either during the drive home or within just a day or two of getting home (I can't remember). She didn't stop bleeding for what felt like weeks and we ended up back in our local ER. Ugh, my PTSD is going bananas this stay. 

 Okay, thanks for all the love!

Christy xo

Post-Op Day 1 (TMJ Replacement)

Hi. Well, as I said yesterday, we finally got in to see Harlie at 7:35pm in the CICU. She was miserable. No matter how many times we have been through this, it never gets easier. In fact, I would argue that it actually gets more difficult. I've said before, that every time we come back to the hospital, I'm bringing all the other stays with me. 

If you know Harlie personally, then you know that she is not an affectionate person. She is definitely NOT a hugger. But, post-op, she wanted to hug. She was complaining of a lot of pain. So, her nurse gave her Dilaudid and that seemed to calm her down. By this time, it was well after 8pm and Tom and I had not eaten dinner. 

While we were waiting to see her (very irritated) Tom and I were talking about how hard this is on parents. 

1. We traveled here - so we are starting off a hospital stay tired from the stress of traveling for medical care. I haven't even been able to tell you that last week we had to say goodbye to Tom's step dad, my father in law, and the children's grandfather (PapPap), Cal Bowser. He was a great man and we will all miss him very much. We went to his service in PA on Thursday and Friday. While we loved being able to see Tom's mom and sisters and family (and meet a lot of their friends), it was definitely a very sad, emotional few days. We drove home on Saturday. On Sunday we unpacked, did laundry and then re-packed for our early flight Monday. 

2. You can't eat when you get hungry. All meals are eaten when time allows you to do so. On surgery day, they took her back around 10:30am, almost two hours later than expected. By that time, the cafeteria is closed for breakfast and preparing for lunch. So, we found a snack in a fast food kinda place downstairs. This is where we sat for two hours (through dinner time) waiting to go in to see her.

3. You spend all day sitting in rooms with other people in chairs that aren't comfortable. Or in our case, walking around. If you know Tom personally, then you know that sitting around waiting isn't a skill of his. I convinced him to walk to the local Athleta store (3 miles away) since I had some credit there. I bought a pair of pants that are comfortable, but look nicer than tights. I'm choosing to be excited about my new find. Haha! We were pretty tired and didn't want to risk having to take too long to walk back and miss the surgeon. So, we took an Uber back. 

4. Worrying - being concerned about your child's well being takes a lot of energy. 

Add all of those things up together and you can't help but be exhausted, hungry and grouchy. All of this happens BEFORE the recovery even starts! 

Walking into the hospital this morning, I just felt sick. Doing all of this again, over and over (without ideal results) is like the worst groundhog day ever. I said to Tom, "I don't want to do this to her again. I'm done with jaw surgeries". Tom said, "Well, in our defense, we didn't want to do this one." Truth. Haha! 

She is okay today - she is definitely hurting. 

They are giving her Dexa something, an anti swelling medication. I don't remember them giving that to her last time. I'm hoping that is the ticket to way less swelling than she's had in the past. 

The anesthesiologist who had her yesterday came by to check on her. He told us that she signed something when she woke up in the OR. None of them knew sign, so they got out their phones and started googling. They learned that she was signing "hurt". So, they gave her more pain medicine. I love when she can communicate her needs and I love it when people try to understand her, even when it takes more effort. He also said that they were able to understand that she asked if the doctor fixed her left ear lobe. They told her yes. Cute. Its the little things. Of course after it heals, we will have to pierce that lobe again.  

She got moved to the step down unit today. This step down unit is pretty impressive so far. They are being really good about managing her pain. I was so tired today that Tom made me take a nap. I fought it for a second, but when he put the couch into a bed, went and got me a pillow and sheets, I had no choice. Haha! 

While the nap was good and very much needed - it is not the solution to my kind of tired. I am struggling this time around. I hate to say it (because I am so afraid I will be punished by some greater power) but I am so tired of being inside a hospital. I am tired of having the same conversations with doctors and nurses. I'm tired of watching Harlie go through too much crap. When she is miserable, I am miserable. When she hurts, I hurt. She breaks my heart. She's already asked me when she can eat. What she means is when can she chew up food and eat it like most people do. Somehow she thinks this surgery was to advance her abilities. But, it wasn't that kind of surgery. The reality is that I don't think she will ever be able to chew food up and eat it. Her teeth don't come together like that. I wish that wasn't a goal of hers. I wish that she would come to the conclusion that she can have a fine, happy, good life without eating food like most people do. It breaks my heart, and that makes me so incredibly tired. 

I spoke with the infectious disease doctor today. She is adding a short term antibiotic to be on the safe side. We are going to leave her on the doxy for another 4-6 weeks, also to be on the safe side. She said that this infection is so rare that there is no protocol for it - we are just making it up. She said she found a few articles. Isn't that crazy? I don't even know what it's called. A shitty deal, that's what it should be called. Anyway, I pray that this infection is gone for good. 

Well, I'm signing off for today. It is 8:30pm and we still have to walk back to the hotel. 

Thanks for all the love. 

Christy xo

Right TMJ Replacement Surgery

Wow. I'm so sorry, I never updated the blog during/after her last surgery. I have worked on some posts, but haven't hit the publish button. 

Well, for now here's the summary:

In March 2023 she had her right TMJ removed (infection) and he put in a temporary spacer. Her recovery was okay. Certainly not as bad as the original placement of both TMJs in April 2021. Which is great, because that was a nightmare. Anyway, if my memory is correct, Tom had a big job starting a day or two after her surgery, so he had to fly home. We were planning on him returning after he got the job going to help us get home. But, that didn't work out. I think it was going to be way more costly for us to wait for him to fly up (another night in the air b&b) and then have all three of us fly back home. So, I said I was just going to have to be a big girl and get her home by myself. 

Well, I'm not going to do that again. That was awful. I just don't have enough hands to push her in her wheelchair and pull her oxygen concentrator and luggage - impossible! I remember getting out of the Uber and having to unload everything (including putting her wheelchair back together) and then I would take the luggage a ways, then leave it, go back for Harlie, then take the luggage further, go back for Harlie, etc. Some nice ladies helped me after they watched me for a sec, so I was grateful for them. But, even after checking the luggage, I had Harlie and the oxygen concentrator. By far, the worst leg of the trip was getting OFF the plane. The ramp that you walk up from the plane to the gate is steep and has bumps from one ramp to another. I couldn't get Harlie up the bump with one hand (and pull the concentrator with the other). I REALLY struggled and finally one of the employees came to help me. He pushed Harlie up and I got the concentrator. Sounds nice, right? No, the worst part is that he looked completely annoyed at having to help me. It was the WORST. 

Anyway, we learned - not going to do that again. 

Okay, back to current events... We flew up early Monday morning. We had to wake up at 3:20am to get us ready and to the airport by 5am. Even with us having TSA, going through security with her takes forever. We got to Boston with plenty of time before her first appointment at 10:30am. So, we took our luggage to the hotel and put it away for the day. Then we went to get breakfast. Then headed to the hospital.

She had several pre-op appointments...

I haven't been able to update you on what's going on with her pacemaker - but back in August it was confirmed that one of her pacemaker leads is going bad. The leads went in during her very first heart surgery at just four days old. So, those leads are 17 years old now! I'll have to save those details for another post. Just know that this is an issue (which will require open chest surgery at some point in the future) and another thing they just wanted to be on top of. 

We went and got dinner and then watched Narnia with Harlie. 

We had to be at the hospital at 7:15am for an 8:45am surgery time. 

I feel like I look so tired in this photo. It is because I am. Haha!

I forgot to mention that back in the summer, her earring in her left ear worked its way out of her tiny little lobe. So weird. No trauma, no big earrings, we have no idea. So, I sent her surgeon a picture of it and he said he could fix while he was in there. 

All that went fine except they were delayed because they were trying to find her an ICU bed to go to post op. They wouldn't give the green light to start until that was confirmed. During the wait, I reminded her that she's going to hurt for a few days again. She said, "I know." Then I told her that in time, she will feel as good as she does right now. She said, "I know." She's so good, y'all. She's so good waiting for surgery. She never complains about being hungry - or about anything at all. It really struck me how good she is (and has been her whole life) while we had to listen to the parent next to us talk on speaker phone (ugh) and her child yelled and screamed that she was hungry and wanted to go home. Now, don't get me wrong - I kinda felt bad for her. No kid wants to go through surgery. But, it just reminded me that we have NEVER had to deal with Harlie like that. Even when she was a baby, or a toddler. It is like she just knew she had to deal with it. 

Anyway, they finally took her back at 10:30am. They said they anticipated a four-hour surgery. We went downstairs and got some food. Tom's messenger bag was breaking, so we went to REI to get him something that would make it through this stay. It was funny, he bought that bag during her first surgery in Boston in 2012. Ahhh, the memories. We had NO idea we would STILL be working on getting her a better airway 11 years later. Anyway, sitting around a waiting room all day has gotten so painful. We've just done it too many times. So, we spent most of the day outside, walking around. We got phone calls every 90 minutes to let us know what was going on. 

Dr. Resnick came to get us around 4pm. He said overall things went well. He replaced the temporary spacer with her new titanium TMJ. He said sometimes when one side doesn't have as much support as the other, it can dislocate the "good" side. Which is what happened. He thought that would be an easy/fairly quick adjustment/fix. But, as everything goes with Harlie - it turned out to be more complicated. He said the dislocation had clearly happened months ago and that soft tissue had grown all around the joint. So, he ended up having to make two incisions on her left side and had to manipulate that side way more than he thought. That means she will definitely have some pain and bruising on that side, too. But, he was able to wash the left TMJ and fix it, so that's good. In total she has four incisions, two on each side. 

He said anytime you're working around/in the mouth - it is very hard, if not impossible to keep things sterile. But, he didn't have to work in her mouth this time. So, hopefully, she will be okay as far as infection goes. We will keep her on her antibiotic for another 4-6 weeks, just to be on the safe side. She's been on this antibiotic since August of 2021, so we will be happy to be done with that medication! 

Anyway, Dr. Resnick said that unfortunately, they still didn't have an ICU bed for her! So, she was hanging in the OR until they could find her one. It is now 6:15pm, and I don't think she has an ICU bed yet. She is supposed to go to the cardiac ICU (CICU) but we checked in with them and they said she hasn't come up yet. Crazy! 

I think when I blog and share stuff with you, I really try to focus on the positive. It is better for me to do that for my own good, too. However, there is always bad stuff. We definitely worry about her. I mean, worry about something going wrong. She's had well over 100 surgeries now and so many of them have been really big ones. She's getting older and her body has been through so much. We can't help but fear something catastrophic happening. Especially when we've had several of those experiences now. 

So, at 4pm we were told that she was just hanging out in the OR, waiting for a bed. Then, I don't know, an hour or so later we were told that she had a bed in CICU and that we should go get our badges, then go up to the CICU waiting area. When we got here (just after 5pm) the CICU said they didn't have her as a patient yet - so she hasn't come up. Now it is 6:30 and she's still not up?!  What the hell? I'm telling you, this is like a roller coaster from hell. We worry, we're told all is okay, now we're worrying again. The worrying about her well being is EXHAUSTING. Add that on to our physical tiredness and I don't know how we live like this! 

Okay, I just went and asked again. She told me that she JUST got up to the CICU and they are getting her settled now. Whew! They will call us when we can go see her. Geez. This life...

I think I'll sign off for today. I'll write again tomorrow. 

Thank you for all the love, thoughts and prayers! We appreciate you all more than you know!

Much love,

Christy xo