Hi! So, there have been some developments since my last post. Harlie had her follow up appointment with her ENT in DC on Wednesday. One of the dressings had not fallen off yet. He removed it and didn't love what he saw. It appears that the growth (abscess) is already growing back. He had his wound care nurse come and look at her wounds and give me some directions on how to care for them. We know her from years before, so she knows Harlie and her past issues with wounds.
While we were doing wound care, her ENT went and spoke to the infectious disease (ID) docs. They all agree that she needs more aggressive treatment. A few days after my last update, I received the labs from her cultures - Staph bacteria. Unfortunately, Harlie is allergic to the oral meds that treat Staph. So, she needs IV antibiotics. He offered to admit her right then, so she could begin IV treatment that night and then while inpatient, they could give her a PICC line so she could come home and get IV treatment here. She's had a PICC line at home twice before, so we are familiar with this process.
However, Harlie's nurse, Brandy was with us and I didn't pack anything, of course. So, being admitted right then would have been really, really uncomfortable and logistically challenging. I said I needed to take Brandy home, and pack, but I could come back anytime (even that night). He said that they would call me and tell me when to come back based on bed availability. So, we left.
Traffic was the worst leaving DC that I have ever seen. The entrance to 395 was completely closed and forced everyone to detour, which was just complete chaos. I really don't know how people deal with that traffic all the time.
After we got home, I got an email from Harlie's surgeon in Boston. He asked me how she was doing. I replied and gave him an update - that her ENT wants her to start IV treatment. He replied quickly and basically said that he worries/expects that this infection will not fully clear unless we remove the joints. He said they should come out sooner rather than later.
I really don't know how to express how devastating this would be. If he needs to remove her TMJ joints, it means that her surgery in April was for nothing. All that bruising and bleeding and pain - for nothing.
Not to mention, the risk of losing the little airway we gained because of the joints. Her stronger voice, her recent ability to wear a speaking valve, even her cap for small periods of time - all of that could be lost.
Would we even be able to try it again?
I just can't. The thought of traveling back to Boston, for another jaw surgery - but this time to go backwards?! No forward progress to look forward to, no forward progress to help keep us all positive. What do we tell her?! How do we explain this to her?
I just can't.
Regardless, she needs IV treatment asap. At this point, I don't see the harm in at least giving the IV antibiotics a chance. Maybe, by some miracle, the staph is really only on her skin and not on the joints inside. I haven't spoken with ID yet, so I don't really have a lot of information.
Anyway, on my way home from DC that night, they called and told me that I should expect a call sometime late morning on Thursday, letting me know a bed was ready. The next morning, I packed and got all ready. I thought about going on ahead and driving towards DC. Maybe we could stop at Tyson's Corner, or something so we were that much closer when they called. I mentioned that to Tom when he called that morning to check on things. He said, no, what if they call you with a change in the plan. So true. So, I didn't leave. Then they called and told me that insurance denied the hospitalization. WHAT?
It was at this point that I completely regretted my decision to drive home that afternoon. Maybe if I had just stayed and let Brandy drive my car back, everything would have been fine. Ugh. If only I had more information! I just had no idea that could be a consequence!
I gave him all the reasons why this is wrong. I told him that her doctors needed to try again. This is another problem with fragmented care - the doctor that truly knows what's at stake is in a different state and not a part of this insurance pre-approval process. Despite how devastating the consequences are to Harlie and my family, the financial aspect should mean something to them. I mean, the cost of removing the joints would be way more expensive than a quick few nights in the hospital getting a PICC line, hopefully avoiding the joint removal. But, they don't know that!
On Friday they called me to schedule her PICC line placement on Monday, as an outpatient procedure. They started her on an oral antibiotic in the meantime, although I don't understand this at all (after being told that she is allergic to all the oral meds that staph is susceptible to). She is scheduled for tomorrow, August 30.
I really know very little at this point. I don't know what they are going to put her on (maybe Vancomycin?) or for how long. Remembering what it was like with her previous PICC lines/IV treatment (also due to post-op infections) it takes some time to set up getting IV meds at home. I mean, I guess it could be done in one day, I just don't see how that's very likely. I don't know. I'm packing bags, just in case things change - again.
I want so badly to hope that somehow things will go her way this time. But, after we got home on Wednesday night I did her wound care (have to do it two times a day). And when I removed the dressings we put on that afternoon, I was shocked to see that the growth on the left side had gotten substantially larger in just a few hours. Despite my hope that IV antibiotics will help, it isn't looking good.
Well, this is all I have time for tonight. We have to be on the road well before sunlight tomorrow. She has to take a covid test first thing in the morning and we have to wait three hours for the results, then they can do the procedure. Under anesthesia, by the way. After the last incident - it is too soon for her to go back under anesthesia.
Oh, I have to tell you a funny story before I go. On Friday morning, I was running an errand with Harlie and we were headed to the car when the trash company arrived to collect the trash. She asked me if she could watch them. I said, of course. So, she walked to the center of our driveway and stood there, watching them. After they had collected our trash, she gave the guys a smile and a thumbs up. Haha! Something about that kid just cracks me up. Despite all she has going on - and her stuff is some serious stuff - she really seems pretty content with life. Even giving a silent "good job" to the trash collectors. She is a funny kiddo.
Oh, and one more thing, we were finally able to renovate the kids' bathroom to make it more Harlie friendly (I'll have to update on that later). When we went to Maine to pick up Cooper from summer camp we went into a cute store and I saw this little sign, and thought of her (and the boys, too).
Okay, I will update tomorrow with how things went - or didn't go - or whatever the hell happens.
Thank you for your thoughts and messages and prayers and all that. I'm sorry I haven't updated to let you know how things went. I should probably warn you that I'm struggling today. That is harder to admit than it should be. I mean, I feel like I've more than earned my feelings. I don't know why it is so difficult for me to admit when I'm feeling particularly sad. But, I am. And angry. Life is way too hard some days. There's a lot going on in my head and in this post, so please, bear with me.
Monday was an early morning. We were on the road by 4:30am. Overall, traffic was okay. There were a few accidents on 95, but they didn't slow us down that much. We were still at the hospital early.
Her ENT came to see her in pre-op and he took one look at the growth by her right ear and said it is an abscess. He said it was hard to tell exactly in a photo. And there are so many people that believe telehealth is just as good as in person care... As you can probably guess, I am not one of those people. And if you were Harlie's parent, you would feel the same way.
So, we are in pre-op and I'm answering the same questions over and over again. So fun. I sent Tom a text complaining about it - oh, the repetitive nature of medicine (while necessary in some cases) drives me crazy. I guess if we were like typical people and only went into the OR once or twice (or none) it wouldn't be so bad. But we are here SO.MANY.TIMES. He replied with "Can you tell me why you're here today?" Haha! I got asked that by four separate people. As well as stating her name, spelling it, her birthday, our address, etc.
I also get asked, "Has she ever had any issues with anesthesia?" And I have always been so thankful to say, "No, thank God." I mean, can you imagine having to go into the OR as many times as she has (like well over 70 now) and having issues with anesthesia?
Hold that thought...
So, they took her back around 9:30. They told me parents are no longer allowed to wait in the waiting room. You have to go to the cafeteria and they will buzz you. Oh, being a lifer in medicine is so much harder now.
Anyway, I think I got called back around 10:45ish. Dr. Preciado and I went into a conference room and he told me that he drained and removed the growth on the right side. He put in three dissolvable sutures. Although her skin is so tight that he couldn't get it to totally close in one area. I can't remember what he said he did about that. It had grown considerably since it first appeared in May. I can't help but wonder if the size of it made conditions worse for her. It is so hard to get her in front of doctors and get scheduled for stuff now.
This leaves me feeling frustrated and worried that because the world is so focused on Covid, that it increases the possibility of missing something more threatening to a patient like Harlie. Unfortunately, there are so many more potential causes of great harm to Harlie than just one virus. We don't have the luxury to worry about just Covid, and we can't let that stop us from doing what Harlie needs us to do to keep her safe. And by safe, I don't mean getting sick. I mean not dying.
Anyway, he couldn't do much with the spot on the left side - said he irrigated it and treated it with silver (what they use for burns). The area under her chin, he couldn't do anything about. So, that sensitive, draining growth (granuloma) is here to stay for a while. Not sure what we can do about that, which is terrible because cleaning it every day is a nightmare. And she hates it. He said we need to wait for cultures to come back. I need to keep her on Clinda until I hear if/when we need to change them. Hopefully we'll hear something soon. I just want to feel some relief that the hardware in her jaw is okay. Is that even possible?
He also did a bronchoscopy. He is happy with how her airway looks for the most part. I think he said it is 4mm? I asked him what it is supposed to be and he said, 6, 7 or 8. He said she has a voice, and can tolerate a speaking valve and trach changes are easy - all improvements from 2017/2018. We did talk about what is needed for potential decannulation and it isn't good. She would need another LTR (airway reconstruction, which is what she had in February of 2018). He said he would have a hard time agreeing to that considering how her skin had/has such a hard time healing. Not to mention that she has too many surgeries ahead of her and intubation through her mouth is just not possible. So, she needs the trach for several reasons, and right now those problems are not solvable.
It wasn't lost on me that we were having this conversation just days from the anniversary of her decannulation. Which, is today, by the way. She was decannulated on August 11, 2015. I can't believe that was six long years ago. Almost feels like it never happened.
It is also the very day I watched her struggle to breathe ALL DAY in Boston Children's Hospital in 2017. And that night at 11pm, she was emergently re-trached.
Yes, today is doozy.
Anyway, he said I could see her in the PACU (post anesthesia care unit). Oh, he also suctioned out her ear canal and said it was full of old blood (which I totally knew). He said her ear drum looks great, though, so that's good.
So, I headed to the PACU. As I was walking in the unit, he was walking out and he told me that she was in Bay 31 and she was NOT happy. Hmm, that's odd, I thought.
She was crying and hitting the bed rail with her fist. She was basically screaming that she was in so much pain. Her nurse was already getting her some pain meds. The feeling in the room was definitely intense. I have NEVER seen her like that. I told her nurse that this was so strange and unusual. I mean, NEVER after any surgery has she ever been this "awake" this soon after and NEVER have I seen her cry tears - and she has had so many worse procedures! What the heck? She was inconsolable. Her nurse gave her Fentanyl, then Tylenol, then after 15 minutes gave her another dose of Fentanyl. I mean, it was bad.
She finally calmed down a bit and her nurse went into the hallway and I sat down. I got out my phone to call Tom when I noticed the room got really quiet. I mean, Harlie's breathing is pretty loud. So, I looked at her and it didn't look like she was breathing. I stood up and put my hand on her chest and shook her and called her name. Then she took some breaths. I looked at the monitor and her sats were 91. That made NO sense. Her normal sats are mid-80s - 91 is high for her. She wasn't on oxygen. And I know she wasn't breathing there for a second. So weird.
So, I watched her and she did it again! I again, shook her and called her name. Sats still good. So weird. So, I went to ask her nurse to check her just to make sure I wasn't going crazy. But, she was on the phone. She could see I wanted her so she came in the room. I told her it looks like she's having episodes of not breathing. She got out her stethoscope to listen to her, but Harlie interrupted her and said, "oxygen." So, her nurse went to hook that up. I looked at the monitor and her sats were still good. So confusing!
Then Harlie did it again. But, this time, she opened her eyes really wide, and then she just went away. There was no focus in her eyes at all and she turned blue. She was completely unresponsive. I looked up at the monitor and her sats dropped to 36 in like one second (that was the last time I looked up so I don't know how low that number got). We shook the hell out of her and yelled her name and the nurse hit the button to call for help.
Someone yelled, "Does she have a trach?" I don't remember who said yes, it could've been me for all I know. They said, "change it!" So, I grabbed her go bag which was on her bed and got a new trach out and opened it. I am so thankful I was on the correct side of Harlie to be able to use my right hand! I asked for lube and someone put it on the trach, and then I changed her trach. My hands were shaking SO bad I could hardly thread the trach ties through to secure it in place! It was so awful! After it was secure, we gave her a ton of oxygen, I think someone bagged her for a second and then she "came to."
Several nurses/staff said nice things to me and were just being supportive, in general. I wanted to cry. I was so angry and scared and mad. But, I didn't. I think the charge nurse or someone like that came in to ask us about what happened. While I was answering her questions, I said something like I noticed she wasn't making any sound, she breathes pretty loud and then Harlie said, "No I don't." Oh, that girl!
The anesthesiologist who was in her case came, too. He said she had a post-anesthesia episode. I'll say! Strange considering how many times she's had anesthesia. He came back to check on her several more times that afternoon.
After she was stable and things calmed down, she fell asleep for like three hours.
I was finally able to call Tom and tell him everything. I feel so bad for him to have to hear so much of what goes on over the phone versus being able to be present.
When she woke up the next time, she was her normal self again. It was like everything that happened from the OR up to the incident - she was NOT okay. The crying, the hitting, the breathing...none of that was normal for her.
She even smiled for me. She doesn't seem to remember anything about what happened. Lucky for her. Haha!
The anesthesiologist wrote down what he gave her during the case and what was given to her after so I could tell future anesthesiologists. So, remember when I used to be able to say she's never had any issues with anesthesia? Yeah, those were good times. What does this mean for next time? Is it more likely to happen again? Is this her body's way of trying to tell me she's had enough?
They kept her for most of the day, and let me take her home at about 4pm. The craziness happened between 11 and 12. On the way out of her room, her nurse said something about a mask for her... I must have looked at her "funny" because she immediately realized her error and said, never mind! Keep in mind she had a negative covid test on Friday. And we just watched her stop breathing. There is no way in hell I will EVER cover up her airway. No.freaking.way. Just stay away from her if you're worried about yourself.
I forgot to mention that an EP (electrophysiology) nurse came to adjust her pacemaker since they were going to be cauterizing her wounds. They come before and after surgery to adjust her settings. She told me that Harlie's pacemaker battery is getting low (she has about 14 months left). So, we need to start sending in monthly pacemaker submissions and seeing an EP doc more regularly so we can prepare to have that changed in the OR at some point. She also needs another heart cath, so hopefully we can have them do both at the same time.
I promise I try so hard to stay out of doctor's offices! But, it is just impossible! There is always something that I have to address.
Yesterday, Harlie saw something about back to school supplies. She looked at me and asked if she could go back to school. I told her I didn't know. She put her hands together and pleaded, "Please! I love science! I want to go to science and art class at school." I told her again, that I didn't know and that I would have to talk to her teacher. She said, "Are you scared I'm going to get sick? Stop being paranoid. I'm not afraid of being sick." She tells me I'm being paranoid a lot. I want to say, hold on Harlie, let me save your life again, then we can finish this conversation.
Oh, we are in such a unique situation. So many people take the freedoms of things like breathing, attending school, learning, etc. for granted. Harlie wants to go to school so badly. She always has. But the decision to send her to school isn't just about getting sick. It is about her overall well being - mentally and physically. And it is about the best way to educate her.
We don't have a nurse this week (she's on vacation). I think I'm kinda glad because I don't think I'd feel up for going to work anyway. She hasn't felt like doing much, either, so I've cancelled most of her appointments for this week. Today, she wanted to go to the mall and walk around. So, we did. Maybe that wasn't the best idea. I really felt the stares today. I forget that she has dressings on the sides of her head that are a little bloody. I wonder if people are so distanced-focused (and Harlie's not wearing a mask) that they just avoid. This one family watched me struggle to get her in the door of a store. The front wheels got stuck and I couldn't hold the door open and lift her chair at the same time. I got it after a bit, but geez! After I got in, she said, oh, I was thinking you were a pro. WTF? And then seeing girls who are probably her age hanging out with friends and stuff. Just makes me so sad how different her life is than the way it should be. I want to make it so much better for her.
Well, I wish I could end this post on a positive note. But, some days are just like that. We will get through it, it just hurts like hell today.
Thank you for thinking of her, and us. I do really appreciate it.
So, another long break between posts. So sorry. I wish I could say the long breaks mean we are way too busy having fun. While we do try to have fun at every opportunity, it is just that life has been so busy with... stuff.
I'll just focus today's update on Harlie, medically.
The day after my last post (over two months ago!) Harlie developed a growth of some sort in front of her right ear. I sent a text with a photo of it to Dr. Strauss (the plastic surgeon here locally). He said he needed to see her. So, we went to see him that afternoon. He poked it and tried to get a culture. He didn't know what it was. This growth has a mind of it's own - it bleeds, drains some kind of fluid, swells, peels, turns red, turns black, etc. And it changes so fast. I took a picture of it at 4pm one day and by 7pm it looked completely different. Watching it has been an absolute ball. And the wound care? So fun!
She has not been able to wear her hearing aid on her right side since her surgery in April. This has been a total drag. And I hate to complain about how my daughter's hearing loss affects me/us. But, well, that's life, folks, so I'm doing it!
Her in-the-ear hearing aid (versus her BAHA on the other side) connects to her tablet via blue tooth, so she can turn up the volume on her tablet to her heart's content and we don't have to suffer hear it. So, no hearing aid = no blue tooth = REALLY loud volume - for all of those around her. Oh, the sacrifice! Not to mention that we have to repeat ourselves, like a lot. I mean, that's already a given with kids, am I right? Now throw in some good hearing loss and well, that takes it to a new level of annoyance. And we try SO hard to not show her our annoyance. I mean, she can't help it, after all! I joke, but we aren't monsters! Not long ago, after I said a bunch of stuff to her, she looked at me with those cute little eyes of hers and an evil little grin and said, "I wasn't listening, can you repeat everything you just said?" 😑 That little jokester! I tell you, she is funny!
I scheduled an appointment with her audiologist to have her test her hearing and make a new mold for her hearing aid. I can't remember if I mentioned or not that the shape of her ear must have changed because of the jaw surgery. Since the temporal wall is shared by the jaw and the ear, the jaw surgery affected her ear shape. I'm guessing here, though. Because it is hard to tell if it was just swelling for so long - or if it changed for good. We will know when we can finally try to put her hearing aid back in. We haven't been able to because of that growth and because her ear canal has been full of debris. And because that growth has made her whole ear really sensitive to touch.
Anyway, her audiologist was unable to do any testing. For one, she cannot wear the headphones in the booth because that growth is in the way. Also, her ear canal is full of debris. So, her audiologist had a nurse practitioner take a look at Harlie while we were there. The NP went and got a doctor (I think she told me he was an adult plastic surgeon) to take a look. He also didn't know what it was. He said he needed to poke it to see what was in it. Here we go again (never got any useful information from the last time). Since Harlie was on her tablet, he said he could do it right then while she was distracted. Haha! I love it when people don't realize how aware and smart Harlie is.
So, he went and put gloves on and hid the needle behind her head. Harlie turned towards him and said, "What are you doing?" I think he was surprised. I'm guessing he knew he couldn't lie to her, so he said something like, I need to drain this growth, just look at your tablet, ok? Then she said, "Let me guess, you have a needle." Haha! He tried, but she wasn't having it. So, he grabbed some scissors and clipped it really fast. It only bled. In summary, he wasn't sure what it is but said it has to be removed in the OR.
I ended up emailing her surgeon in Boston and sent him some photos and brought him up to date. At this point, three plastic surgeons had seen it. I asked her surgeon who should remove it - plastics or ENT? Since we need to get the debris out of her ear canal, I sent photos to her ENT in DC. He can remove the growth, clean her ear canal and do a bronchoscopy to see if anything has changed in her airway since her jaw surgeries. Sounds like the most efficient start. So, that is scheduled for Monday, August 2nd.
After getting the date (like a month ago), her whole right ear got red and angry. I sent new photos to her ENT and he put her on antibiotics. While on these ABs, she developed a pocket of stuff on the left side! Now the left side keeps filling up with fluid (not blood) and draining some on it's own. More wound care, which got old like four years ago.
Today is Saturday and her surgery is Monday. She woke up this morning with a new pocket of fluid under her chin!!! Are you kidding me?!?!? This is the worst game of whack-a-mole, ever!
We have to look at her spots several times a day and we have been doing this for months now. The other night I looked at her left side and sighed. She asked, "How does it look?" I (also not wanting to lie to her) told her it was swollen again. Then she exclaimed, "OH, C'MON!" She cracks me up. She is so funny, even when things suck. I have no idea where she got that kind of sense of humor. ;-)
I have attempted to write this post several times since last week and I keep getting interrupted. Today is now Monday, and surgery is today.
I have had numerous conversations with nursing staff from Children's National in the past week. Two pre-op nurses called to go over her history, etc. A nurse called me specifically to ask me when her Covid test is and that it is my responsibility to bring proof of a negative result. That conversation got old a year ago. I HATE being talked to like I am an irresponsible idiot. But, that is what everyone assumes now. We are all idiots who are a danger to society.
Lastly, I got the nurse who called to tell me what time Harlie's surgery is (that is usually late in the day, the day before surgery). I can't believe it, but they told me that she was scheduled for 5pm! Wow. Never has she been that late. And, honestly, I was surprised because it was her ENT that said he would never do surgery on her in the afternoon again. That was after he ended up having to do an airway reconstruction (called an LTR, which is a HUGE deal) at 3pm.
So, I asked her if she was sure. She said yes, Dr. P has a busy schedule that day. I told her I was just really surprised, I didn't think he wanted her to be late in the day. She apologized, but what could I do? I was like, well, okay then. Maybe he feels confident that this won't turn into something more serious. Okay. Plus, she said Harlie is 14 now. And while I certainly know that's true, it doesn't mean that she acts like a 14 year old. And by "acts" in this sense, I'm talking about her medically. I just don't think lumping her in with every other 14 year old makes sense. But, blanket policies that disregard the particulars (and cater to the healthy and typical) are all the rage now.
Take, for example, the NPO (nothing by mouth) instructions prior to surgery... the nurse calls and tells me she needs to be NPO after midnight - for a 5pm surgery time. That's 17 hours, people. Dumb. Totally dumb and completely unnecessary for her to go without eating for 17 freaking hours. This isn't a colonoscopy! Not to mention the complete disregard to her heart defects. Her cardiac situation and passive blood flow requires that she stay well hydrated. Thankfully, I'm NOT an idiot and I know not to adhere to those instructions. So, I told her, sorry, I'm not doing that. She is g-tube fed, and is tube fed liquid formula and she needs to stay hydrated. So, she tells me to stop her feedings 9 hours before surgery and I can give her clear liquids like GINGER ALE up to two hours before surgery. I'm sorry, did I hear her right? Did she really just tell me I could put ginger ale in her g-tube?! Who does that?! Why would someone do that?! I really don't think anyone would do that. Ugh, this is a major problem with over instructing people - they stop thinking for themselves. She's on auto-pilot and isn't even listening to parents while she is doling out pre-surgical instructions!
Anyway, earlier that day, Harlie had to have a preop check up and a covid test. I was stressing a little bit because the hospital requires a covid test to be done within 72 hours of surgery. This means that we had to do the test on Friday. But, that means that I can't have proof of results ON PAPER until Monday morning after the office opens at 8:30am. I say this because that's what the lady told me - that it was my responsibility to bring proof of results - on paper - with me to her appointment. But, without knowing what time the procedure was, how could I promise that? I mean, if her surgery is scheduled for 7:30am (which is the usual time for Harlie) then that means I have to arrive at the hospital at 6am. On a Monday. Which means I have to leave my house at 4am. So, how can I get the paper during the weekend when the office is closed? And, for some reason, this office will not email me the results. This was a problem when I realized that I forgot to go pick up the paper for Cooper's negative results when we were driving through NEW YORK on the way to Maine for summer camp. UGH! For real. Luckily, they said they would fax the results to the camp office. Regardless, that isn't going to work when the hospital needs the proof at 6am.
My other option was to drive her to the hospital in DC and have her tested there. So, I would take a day off from work, drive at least two hours to get there, get a 10-second swab, then drive at least two hours back, pay for gas, etc. Um, no, thank you.
So, when I was told that we didn't have to be at the hospital until 3pm, I was like, well, at least that solves the covid test problem. I can easily swing by the office before leaving my house at 1pm. Fine.
We had a regular morning, worked out and I took my time, walked the dogs, and then got ready for the drive to DC. I packed an overnight bag (just in case) and started to load the car when I got a phone call at 12:30 from the hospital. I saw the number on my phone, and I was like, that's weird. It can't be good that they are calling me.
Hello? Hi, is this the parent of Harlie? Yes, this is Christy. Hi, well, Dr. P wants to know if you can come next Monday instead of today. He doesn't want Harlie to be such a late case.
Great. Took the day off from work for nothing. Awesome. I also rescheduled her GI appointment and canceled her teacher today. Apparently, they were supposed to tell me on Friday.
Now I have to do all of that again - the covid test, taking a day off from work, canceling her teacher, and her speech therapy next Monday. Except now I get to worry about that freaking piece of paper with her covid-negative results because she said she will be an early case. I'll have to call her doc tomorrow and get something figured out. I don't want to deal with that today. I'm taking the rest of the day off.
But, you have to take the good with the bad. And I love Dr. P. And one of the many reasons why I love him so much is that he isn't even scheduled to be in the OR next Monday. But, he is going to go in JUST FOR HER because he does not want her to go in to the OR so late in the day. So, he must remember that day three years ago as much as I do. Man, there is something so great about that.
Oh, before I go, here are some random pics since I haven't shared any in so long...
Harlie reading to Mabel.
Harlie at the paint store.
Harlie's growth-thing at different stages...
The growth-thing on the left side.
Harlie checking out her bird book on the deck the other night.
Harlie at speech therapy, sporting her speaking valve.
She's really been a super busybody lately. She must be feeling better and her blood levels must be getting back to normal. She definitely has more energy now.
Okay, that's it for now. I have so much more to share, but I will have to share later. I'm going to take advantage of this impromptu "free-time" and take Harlie to visit my mom. As always, thank you so much for caring about this crazy girl of ours. We do love her so much, and we appreciate that so many of you love her, too.
So, I started writing this a few weeks ago... I just couldn't get back to it. So, here is a general update on what's been going on...
Wow. We have been home from the hospital for two weeks (it's been three weeks now). Things have been VERY busy.
On April 25, Harlie was still bleeding. This was one day after leaving the hospital. Dr. Strauss came to our house and applied a pressure dressing.
Throughout this whole bleeding ordeal, I was reminded of the Vegas Vacation movie. Granted, it was pretty bad. Nothing like Christmas Vacation, which is my favorite movie of all time. Anyway, there is a scene in Vegas Vacation that came to mind as we would stop the bleeding in one place, just to have her start bleeding in another.
On Tuesday, April 27, I emailed her GI nurse practitioner. I gave her an update on her feeding issues, etc. I went for a walk and during my walk I got like 4 Harlie-related phone calls. I ended up walking several miles, all while talking on the phone with different providers. Sometimes I think there is no escape. Haha! Anyway, on the way home, an Edible Arrangement van passed me in my neighborhood. I thought, some lucky just got some fresh fruit. I've always wanted one of those. Then I got home and saw that the lucky was ME! Haha! Tom's mom and sisters sent it to me. It was so good!
Anyway, her GI NP emailed me back and ordered x-rays. We took her that afternoon.
That afternoon, Murphy had to be at work at 4pm and I had a parent track team meeting at Cooper's middle school at 5pm. There was an issue with the orders and it took a long time to get that sorted out. I told Murphy there was no way we were going to be back in time for me to take him to work. So, he called a neighbor, and luckily she was able to take him. Coincidentally she was taking her daughter to skate practice right across the street from his work at the same time! I love it when things work out like that.
When we finally got back to do the x-rays, we had a tech in training. This made taking her x-rays four times longer than it normally would take. I was watching the clock, hoping I could make it to the parent meeting without being late. Being patient in moments like that is really hard.
We rushed home, I dropped off Harlie and Brandy and then I went to Cooper's middle school for the meeting. Yes, I was like five minutes late. It is really hard to switch gears from all of Harlie's stuff to standing there in a group of parents hearing about details of practice, meets, how to get water to the kids during practice, etc. I just feel like I'm not wholly in one place. It makes me feel lonely sometimes.
Wednesday, April 28th was Tom's birthday. I feel so bad for him. His birthdays have often been overshadowed by Harlie's medical stressors. We ended up going to our favorite restaurant and meeting some friends there. Since the bar is open again, we were able to do one of our favorite things and SIT AT THE BAR! Haha!
Earlier that day, I had a virtual meeting with Harlie's GI nurse practitioner. She put Harlie back on some meds to help her body process her feedings a little faster. She said her x-rays were fine, so that's good. But, we are back on the feeding pump and we have to feed her so slowly. This is definitely a step backwards. I'm sure it is only temporary, but it is showing a trend of a slower/more difficult recovery from a hospitalization that I don't like. If this was an isolated incident, it would be okay. I'm practically laughing at the thought of an isolated incident with her. Haha. Nope - she isn't done and we know there will be more surgeries/hospitalizations ahead. So, the thought that her body is having a harder time recovering is REALLY weighing on me. I'm trying to stay in the moment and not think too much in the future. But, it is hard.
One of the meds she put her on ended up being a little problematic getting filled. Apparently, Medicaid would only pay for NAME BRAND and not generic. WTH? So, they had to order it, which took two days! So frustrating when she could've had generic that same day. And, for some reason, they had to send it to a different pharmacy. Super. Of course, all of this meant that I had to take three different phone calls during Tom's birthday dinner.
Thursday, April 29th we had an appointment with Harlie's local cardiologist. She had an echo and EKG.
All looked good for her. He said her chest x-rays from Tuesday were fine. And he said that based on her most recent labs, her hemoglobin is low. That explains her being out of breath from a little activity (like walking up the stairs) and her low sats. He said that while her hemoglobin is within normal limits of a normal person, it is low for her since she is cyanotic. This is when it is frustrating/difficult for her - no one specialist knows enough about her. So, I said, do they (hematology) know that? He said he would make a note in her chart. I told him I hadn't heard from hematology yet and if we are waiting for them to do anything about her being anemic, I want to see them sooner rather than later. Also, we are holding her daily aspirin until we learn more about her bleeding issue. And cardiac kids take aspirin because it is supposed to help reduce the risk of stroke. So, I just really want to get all this sorted out so I can take that off my mind. Geez, I'm running out of room up there! So, he said he would request for them to call me to make an appointment.
On Friday, April 30th, I went to the "new to me" pharmacy to get Harlie's name brand med. When the pharmacist gave it to me he told me to shake it up really good, as he was demonstrating how to shake it properly. Thank goodness, because I've never shaken anything before. Then he gave me three, 1ml syringes. He told me that the dose was 1.4mls, three times per day. He then told me that I would have to fill up one 1ml syringe and then fill another one up to .4. For real. Is this where we are now? No one is assumed to have any intelligence? Luckily, I walked there, so I was able to walk off my annoyance at the interaction.
I also went on ahead and called hematology (instead of waiting for them to call me) and got an appointment for Harlie for next Friday.
On Saturday, we didn't have a nurse for Harlie. By her 9pm meds, I was really tired. And this isn't I need a good night's sleep tired - although that is true, too! It is a tired that goes deeper than that. It is hard to explain what it feels like to be pushed in every way - physically, mentally, emotionally. Anyway, I went into the cabinet to do her 9pm meds and all of a sudden I saw a bottle of meds that shouldn't have been there. I realized then that I had made a mistake - twice! - earlier that day. I gave Harlie the wrong medicine!
I thought I was giving her E, but instead, I gave her O. E helps her body process food, and O makes it slow down. E is a white medication and is in an entirely different bottle with a different cap and all. O is a red medication and the bottle is smaller.
My only saving grace was that the dose for E is half of the dose of O. So, at least I didn't overdose a medication (I gave her half instead). But, I certainly didn't help her body process food. And, really, I was SO upset at myself. Really, you have no idea how much I beat myself up over this. How could I miss all the red flags that I had the wrong bottle?! How did it even get in my hand to begin with? I was talking to a nurse friend of mine and told her that if I worked at a hospital and did that, I would be fired. She said, yes, but you would never be allowed to work this many hours, either, and this is exactly why. This just proves why it is so important to have breaks and clearly, I need a few.
On Sunday, May 2nd, Tom and I went for a hike. We did this trail called Fortune's Cove in Lovingston, VA. It was about five miles. It was the first time Tom and I have been away from Harlie since before her surgery. And, to be honest, we needed it. The past few weeks have been really hard. And the way Tom and I get through the hard stuff is by taking breaks and laughing. But, there have been so few breaks and this has been a really long stretch of having our sleep interrupted. And my constant worrying about Harlie is a total energy drag. So, I was a little worried that I wouldn't be able to power through a somewhat difficult hike. But, I did. And it was really good for me, and for us. After we were done we stopped at one of our favorite breweries in Charlottesville and got some food and drinks. It was great to just sit down and enjoy the outside together.
On Monday, May 3rd, I went to work for the first time in three weeks. I was a little worried I didn't have the brain power for work. But, I think the medicine mistake over the weekend might have been a sign I need to work a different part of my brain. This also proves that work is easier than my home life. I have been joking about that for years. Now it is proven. Haha!
I had to chuckle at my work. When I left before Harlie's surgery, I changed my email auto reply and said that I would be out for about a week and a half. When that didn't happen, I asked them to change my auto reply. Since none of us had any idea when I would return, my co-worker put "I will be out of the office for the foreseeable future. I will get back to you as soon as I can after I return." Haha! Those poor people who were asking stuff from me had no idea what to do with that. Luckily, I don't really do anything too time sensitive.
On Tuesday night, May 4th, Harlie was really complaining of pain behind her right ear. Her nurse had already given her Tylenol and it wasn't helping her at all. I had to give her the stronger pain meds, which I had been able to put away for the last several days. I also thought that her right ear and the surrounding area looked more red than usual.
It was 9:30pm. Based on Harlie's prior infection history (there's been a lot) I got pretty nervous. So, I sent a text to Dr. Strauss. He answered immediately. I told him what I thought, and he said he could see her the next morning at his office between 9-11am or he could stop at our house on his way home that evening. I really felt like it couldn't wait. Time is critical when it comes to infections - especially when there's metal in a surgical site. The next morning, Cooper had a 9am appointment and I was supposed to take my Mom to the hospital for her spinal fusion surgery at 11am.
I really wanted to do all of it. I hate not being reliable to my Mom or my siblings. I hate not being able to do what my boys need. But, clearly, I HAD to take Harlie. So, I asked a friend to take Cooper to his appointment for me and I took Harlie at 9am, thinking I would be done and back in time to drop her off at home and then go get my Mom.
Anyway, I took Harlie to see Dr. Strauss and he agreed that she needed to go back on antibiotics. He also stuck a pocket of blood that had developed, so he could send some blood away for culture. She's had three different pockets develop since she got home and two have come open on their own, leaking blood. I can't believe we are still dealing with this blood!
I called my sister and gave her an update and she said she would take Mom for me. I got Harlie home and settled, and then I went to work for the afternoon.
On Thursday, May 6th, Cooper had his first track meet. Well, his first was actually on Tuesday, but it got rained out before he could run his event. Anyway, Cooper did great. He had to run against 8th graders, so he was definitely the smallest kid in his event. But, he looked great running and he was giving it his all, so that's awesome.
On Friday, Murphy had a doctor's appointment at 8:15am and Harlie had her hematology appointment at 11am. So, it was a busy morning.
As far as hematology goes, I'll quote the doctor, "It is complicated." Her numbers are confusing. She did say that there is a test she wants to run for something that they have recently found in kids with VACTERAL (which is one of Harlie's things). They found it in the last five years. I'm not even going to talk/think about it until the test comes back. There is no point in me learning about this particular blood disorder if she doesn't have it. So, when I find out, I'll let you know.
They got more labs and unfortunately, had to stick her twice. Ugh, her arms are so bruised and it was more difficult for them to find a good vein. The hematologist said she will have to come back on a Tuesday to do more labs and run more tests. Fridays are not good hematology days - they can't send off certain tests on Fridays. Apparently the scheduler didn't know that. Awesome. So, we'll go back on a Tuesday sometime in the near future.
Also, side note, earlier that morning, Dr. Strauss sent me a text asking me how Harlie was doing. I told him there appeared to be no improvement since staring the antibiotics. I told him that we had hematology at the Children's Pavilion that morning and he said he would walk over and take a look at her. So, he did. He agreed that it looked no better, but it also didn't look worse, which is good. I was able to explain to him that based on my prior experience with her crazy post-op infections, I'm nervous. There was/is one particular memory which has been worrying me.
I told him that years and years ago, when she had her post-op infection from her spinal fusion surgery and had to go into the OR at like 11pm (unplanned, obviously) the surgeon came out and said something like, thank goodness the infection didn't get to her hardware (screws) in her spine, because I would have had to take them out.
Well, there's hardware in her jaw. What if the infection has gotten to the hardware there? So, I asked him if the same thought applies to her jaw. And he said, yes. So, we talked about a plan.
First, he put her on antibiotics and we hope that does the trick.
IF it does not, then her wound will have to be opened and drained/cultured. The question then is where should that happen? Here in Richmond, or in Boston? He said he would feel comfortable doing it here and reporting to her surgeon in Boston. They have been in constant communication so far about what's been happening with Harlie. He said he would get infectious disease on board, and she would get a PICC line and go on IV antibiotics.
IF the infection threatens her jaw/hardware, we would have to go to Boston, since her surgeon knows exactly how he installed her hardware.
So, we have a plan. And I hope that we won't need it. The thought of opening her up again, and/or removing the hardware, well, I can't even allow myself to think about it. Two of her infections that resulted going back into the OR were close calls. In one case she went into cardiac arrest in the OR, so I'm not kidding here. And right now (and for the past few weeks), I can't stop thinking about those experiences.
All I have to say is I am so incredibly grateful for Dr. Strauss. I can't imagine going through this without him to look at her and make me feel better. Just knowing that we are not relying on my eyes/knowledge only is a life changer. What a gift to have him cross paths with Tom at the right time. If you don't remember, Tom did his kitchen renovation.
Sunday, May 9th was Mother's Day and it was my Mom's birthday. And she got to go home from the hospital after her spinal fusion on Wednesday. Hopefully her recovery from here on out will be good to her.
I'm going to stop there for now. Since I haven't shared a photo of Harlie recently, I'll share this one from May 3rd.
In this photo she is trying to smile. So, you can see that she can't move the right side of her face. Did I already talk about that? Shoot, I can't remember. Okay, I'll tell you this real quick, and then I have to go. When we realized that she couldn't move her face much I kind of panicked. I was afraid that we just sacrificed her smile for a potential better airway. And I wasn't happy about that. I mean, how could that be a choice? What is more important? Ugh.
Anyway, I asked both surgeons about that and they said that the nerves are likely just bruised and it could take weeks or months for them to heal and come back. Thank God.
Okay, I will write more soon. I have a lot more to tell you about. I really wish I could write more often so my posts could be shorter. As always, thanks for reading and for caring about our sweet girl!
I started this post on Saturday, April 24, but while writing, we were told we could take her home, so I closed my laptop and haven't been able to get back to it. So, here's what I wrote then and I'll write an update soon....
Seriously, are we only on POD 10?! Definitely feels like Boston was longer ago than that!
Anyway, today is actually Day 11 (Saturday), but this is Day 10's update (Friday). Yesterday a music therapist came to visit. She works here, but also volunteers for Jacob's Chance and she knows Harlie from that organization.
Harlie loved it (even though her expression can't show it yet) and was the most playful she's been since surgery.
Harlie was watching the show The Loud House and the episode was about selfies. Clearly, neither one of us have been in the mood for selfies lately. But, I was feeling not as afraid as I was before and honestly, that was a welcome relief. Plus, Harlie's spirit started to show a bit, so I was feeling pretty happy about that.
Dr. Strauss took her into the OR in the afternoon. She had many dressing changes on Thursday. Sometimes they were three hours apart, sometimes two hours apart. But, it seemed to stabilize for the longest stretch with a dressing change at 9pm on Thursday and then not again until she went into the OR on Friday afternoon. Dr. Strauss cleaned her all up, removed the sutures (went from ear to ear under her chin and then in front of each ear). And he put a suture in the neck drain site. He put Dermabond on all the incisions and a dressing.
They gave her plasma in the OR. I haven't been able to tell you about the hematology conversations I've had. Honestly, my sleep has been interrupted so many times, I'm running on empty and just haven't had the energy for it. Basically, some of her labs have come back confusing (clotting factors, vitamin K deficient, antibody something or other, mixing study, etc.). While I understood what she was saying when she said it to me, there is no way I could explain it to you. And, in the end, nothing she said was too alarming or sounded very serious, so that's really all I care about. They took more labs right before she went into the OR, then they gave her plasma in the OR, then they took more labs after the OR. All of those labs take days for results to come back. So, we aren't solving anything this particular stay. Will likely continue to investigate as out patient. Yay. More specialists.
Anyway, this is how she looked after the OR. I definitely can see Harlie coming back and we are thrilled!
Also, Dr. Strauss said she is over the hump - and our trajectory is now pointing in the right direction. That is always such a relief!
Oh, a few negatives I forgot to tell you about - she has not been tolerating her feedings. Really, she hasn't been right in that department since her surgery on the 13th. That is pretty odd for her, for sure. And since she's been on some pretty heavy antibiotics, her GI system is suffering. Poor girl keeps signing that she's sorry. Oh, break my heart. I keep telling her that she doesn't need to be sorry. I am the one that's sorry! But, at the end of the day, she is 14 and she has been pretty embarrassed and uncomfortable. The worst is during the night. That is what has been causing my lack of sleep (and hers, obviously). Having to wake up to get her up and to the bathroom, then clean her up, change whatever linens need to be changed, etc. takes time and it has been like 3-4 times per night. I am up and busy just long enough to really wake up and then it takes time to fall back asleep. I'll sleep more later. But, for now, I'd love some relief for her, because she is miserable.
I also forgot to tell you about Thursday afternoon. I don't know what the heck I DID tell you about Thursday, haha!
I heard that Harlie's pediatrician from years ago (Dr. Keith Derco) was going to come visit. He retired from that practice a few years ago and we have really missed him. He came to visit us at Children's National back in 2018 when she was in the hospital for two months (February - April) after her LTR surgery. We have stayed in touch because he has been a huge advocate for building a stand alone children's hospital in Richmond. And he has been working with the CEO of Children's Hospital of Richmond (Elias Neujahr) in making this happen. Over the past few years, Keith has invited me to several meetings with Elias (along with other lifer or seasoned moms) to discuss a new hospital. And that project is coming along nicely and is currently being built right across from the hospital here. The new stand alone children's hospital is scheduled to open for business in two years. Pretty exciting!
Anyway, so Keith came in followed by Elias Neujahr! What a nice surprise! Like for real! How special do I feel that we had a visit from them?! Elias said a lot of complimentary things to me, which was super nice. He is a very kind hearted person. I am so, so upset with myself that I missed an opportunity to take a picture of them with Harlie. But, Elias did ask me what they could do for me and I told him what would make my life a bit better and he did it!
I was able to have Brandy relieve me at the hospital for a few hours on Thursday night. I cannot leave Harlie alone on the floor at VCU. I wanted to go home and shower and re-pack my bag. Plus, Harlie needed more stuff. Anyway, on the way home I totally missed my exit! I never miss that exit. I knew I was super tired when it took longer than it should've for me to right myself and then take the long way home. Ugh.
We are waiting to talk to hematology. She's been cleared by all her other docs for discharge. If hematology says they are comfortable for us to take her home, then we will.
It is now May 3rd. And we have been so busy since we left the hospital. I will update soon, but for now, yes, hematology came in the afternoon and said we could just be followed out patient. So, we went home. I noticed as we were leaving that there was a spot of blood on one of her bandages. So, clearly the bleeding had restarted.
Harlie HATES getting the IVs taken out. I guess she hates all the tape that keeps it in place. Because removing the actual IV isn't painful. Some things are way more anxiety-based than others, I suppose.
She was home and in the chair for two seconds before Mabel jumped up to hang out with her.
As always, thank you so much for all the love and support!
Last night (Tuesday night) was okay, I guess. Caylee put fresh dressings on Harlie's wounds right before she left and about an hour later, they were soaked through. I took a pic (oh, you do NOT want to go through the pics on my phone) and sent it to a friend of mine who is a nurse and works at our local hospital. She thought it was too substantial to continue to treat at home and she encouraged me to bring her to the ED. I am not easily convinced to take her to the ED. So, my friend took her phone to the ED and showed the pics to the attending. He/she (I can't remember) said to bring her. This was sometime around midnight. I checked on her again and the bleeding appeared to stop. Her dressing was fine. So, I sent another pic, just so they knew I wasn't crazy. I told them I was going to wake up every two hours and check on her and if this dressing got soaked, I would bring her then. She was "fine" all night, her heart rate came down and was good all night. Her dressing was stable. I think at 5 or 6am, Tom woke me up to ask her about meds, I told him what to do and he told me her dressing was still white. So, he let me sleep. At 7am I got up to check on her and the dressing was SOAKED. I don't get it. Ugh. So, I told my friend that I was getting dressed and was taking her to the ED.
I also texted her pediatrician and she called ahead for me. I also texted our surgeon friend, and he told me to let him know when we got there and he would come see her.
Since we had a little warning that we would end up in the ED, I could tentatively try to make arrangements for the boys. On Wednesdays, they don't go to school. And Cooper had an appointment at 9am. Poor kid. At like 10pm he came downstairs and asked, "Mom, so what's the plan for tomorrow?" He is struggling with the unpredictability of our lives. I told him that I had no idea, but we would get him there and please try not to worry about it.
So, Tom took him and dropped him off and Blake (a friend of ours) picked him up. It really takes a village.
Anyway, I had to change her dressing because it was bleeding through and getting everywhere. I got her dressed gave her a dose of pain meds and took her to the ED.
I wrote all that yesterday, but the day got so busy that I couldn't finish. Now, my memory is a little foggy and I am really tired. So, trying to remember everything and then putting it in writing is a little exhausting. So, bear with me...
They wanted to get an IV, so the nurse used an ultrasound machine and tried her best, but was unsuccessful. I guess there were four of us or so holding Harlie down (including the surgeon) so Harlie certainly doesn't make it easy. The nurse got some blood, but couldn't use it for an IV.
The results of that lab work was very concerning. Her platelets were very low and so was her white blood count. The resident mentioned Aplastic Anemia and, unfortunately, I googled it. So, I was trying to keep calm and not freak out - but between the labs and her inability to stop bleeding, it made sense.
They ordered some blood for a transfusion, but they needed an IV to give it to her. So, they had to try again. I can't tell you how hard sticks are when your kid is off the chart anxiety and PTSD ridden. I told the resident that the same person who tried the first time, couldn't try this time. He needed to get the best they had and forget about that ultrasound machine. Just get someone who can stick a kid one time, successfully.
Well, this nurse did. So, they took more labs and those came back all within NORMAL ranges! WTH? Not that I'm complaining! I did NOT want her to have that. But, geez, way to scare a mom!
But, now we were back to not understanding what is going on. Now that I've had an entire day to learn it, I'll try to break it down for you.
She isn't bleeding like if you cut your finger kind of bleeding. It is old blood (very dark). So, she doesn't have a vessel that's actively bleeding. So the surgeon said he doesn't have to go into the surgical site and look for the source of the bleeding, thank God.
The bleeding is really more like old blood seeping out. They put in a drain line in her neck during surgery to allow the blood to come out. When it appeared to stop draining, they pulled the line out. I guess the line was a little smaller than the diameter of a pencil. It appeared fine for a couple of days. But, then blood started seeping out of that hole. So, the bleeding is blood that is coming from her tissues. That's what all the bruising is. And he thinks that is why the bruising is so much worse on the left side - because there is no way for the blood in the tissues to seep out. Whereas on the right side, there is an opening for it to escape.
He's afraid to put a pressure dressing on it, or close it with a suture, because then it will back up internally. Although maybe the pressure internally might stop it. It is hard to tell.
I asked him about the suture removal because it is very clear at this point that there is NO way in hell she is going to cooperate for that. He agreed. So, the plan is to take her into the OR on Friday (I think) so he can remove them, clean her up and get a good look at what's going on.
So, around 4pm or so she got moved up to the floor.
I forgot to pack food for her in my haste to the leave the house, and the hospital doesn't carry her formula. So, she went ALL day without feeding! I did have the tubing with me, so I was able to give her water. Once Tom got things settled at home, he packed a bag with some stuff for me and Harlie (including her formula) and brought it to me along with some dinner. It was the only food I had all day.
Things are a little more challenging now that Murphy has a job and is working more. We can't count on him to help with Cooper. And Cooper takes what is going on with Harlie a lot harder than Murphy. So, Tom left a little after 8pm. When he left he said good-bye to her and on his way out he told me that he thought she felt hot. Well, an hour later her nurse checked her temp and it was 101. Crap. And that is while she's on Tylenol around the clock.
So, the resident came to tell me that they had to get more blood cultures and she had to have another IV placed. Damn it. So, I told him the same thing I told the resident down in the ED. No ultrasound machine, send someone really, really good.
It was probably around 11pm or so, when in walked two people - with an ultrasound machine. For reals? I will say he introduced himself as a doctor from the ED. Well, that's interesting. I told him our experience with the ultrasound machine and that I wasn't loving the idea of trying it again. He said that the ultrasound machine was "his thing." This is where it gets so hard. I have heard people say things like that, then they end up sticking Harlie three times. I mean, I don't know these people, I don't know their track record. Are they really good, or what? And I can't stop them. I have to let them do their thing. But, there is still an instinct to protect your kid, and I didn't want them to have to stick her any more than necessary. Also, they do it and leave. I am the one telling her she has to do one thing after another that she hates or causes her pain.
He got it on the first try and he got a big vein. I told him good job. And then he said thank you for trusting me. Nothing personal, but man was that hard! They added Vancomycin (antibiotic) or her meds (along with Zosyn). Vancomycin can be hard on veins, so great job to him for getting a big vein!
At some point late in the night, Harlie's nurse asked me if I wanted her to bring in a bed for me to sleep in. Um, are you kidding me?!
Oh, I was so happy!!! You have no idea! The only time I've ever slept in a bed in a hospital is when Harlie was in rehab. So, yay for that. Although, according to my Garmin I slept for a total of 1 hour and 46 minutes, and not in a row. And, boy do I feel it.
Anyway, I had to change her neck dressing at 1am, 4am and then the docs changed it at 7am. All three times the dressings were completely saturated. Crazy. And she wasn't moving around, she was just sleeping.
Thursday
Tom came by in between appointments he had close to the hospital. He always brings energy with him. I am lacking in the energy department, that's for sure.
The other night Harlie received a package. It was from "Friends in the Neighborhood." There were actually two packages and this awesome face mask was in one of them...
Hahaha! Sooooo funny! Thank you so much!
We've had to do a few dressing changes today. And we are trying warm compresses on that really bruised side because they said it can help the blood break down and get dissolved by the body easier. Or something like that.
Well, this is all I have time for today. Thank you so much for your continued love and support. We appreciate it so much!
I'm sorry I haven't posted in a few days. There just hasn't been time. I've been writing what I could, when I could, so this post might be a bit choppy.
So, on Sunday, Tom got up early and went to the airport to pick up our rental car. I headed to the hospital and when I got there plastics was in her room. He asked me if Harlie had ever had an unusual amount of swelling post op before. No. He said that she does have more swelling than they expected. He wondered if one of her heart medications might have had a negative affect on her swelling. He also asked me if we put ice on her face after surgery.
Well, this is a real problem with Harlie's care. Because of her heart defects, she always has to go to the cardiac intensive care unit. But, the negative is that those nurses don't normally take care of craniofacial patients after major jaw surgery. So, they don't do that kind of care on a regular basis. Ice wasn't mentioned for a while (hours/next day, I can't remember) and they were not great ice packs. I really wish her care could be handled differently. There's got to be a better collaborative approach to her care.
Anyway, after they left, Harlie asked me for her tablet. I looked everywhere, but it was gone. I held out hope that her night nurse put it somewhere, or that it got mixed up in the linens, etc. I really wanted there to be a reasonable explanation that ended up with her getting her tablet back. But, that wasn't the case. Someone took it from her bed while she slept. Her room is right across from the nurses station (they said they put her there to keep an eye on her). So, it was an employee. The trash had recently been emptied, so it could've been whoever took her trash. Seems like it would've been worth asking who did the trash in that unit. Yet, no effort was made. They called security (what a joke). There are no cameras. Tom did the "find my device" thing and it was still in the hospital until late afternoon/early evening. Tom locked the device, he made it alarm, etc. Unless Tom and I searched the hospital ourselves, there was no way we were getting it back. I just can't explain how infuriating this is, how violated we feel, how incredibly awful this is for Harlie.
I know the easy solution is to replace it with a new tablet. A better tablet, even. But, it isn't that easy. Harlie gets attached to things. She doesn't go to school. She has no friends. She has no activities she's involved in (soccer, dance, etc.). When you have less in your life, what you have means a lot more.
A few years ago she had a tablet that was full. She couldn't put new apps on it and that was driving her crazy. Easy - get her a new tablet with more memory. So, Tom got her one and excitedly gave it to her. She took one look at it and said, "No. Take it back." She didn't want a new tablet. She wanted her tablet to work better. We tried several different ways to explain that it was full. I don't know why this was hard for her, but it was. Tom took a few days to think about it. He came home one day and said, "Harlie let's do an experiment." She was all about that. So, he put several different sized bowls and had her fill them up with water. He asked her to put more water in a bowl. She said, "It is full, no more water will fit." So, he reached for a really big bowl and he said, "See how much water it holds? This is like a new tablet...." And she said, "No way!" and left the kitchen. But, she thought about it and realized what she needed to do. She couldn't watch him transfer the stuff from her tablet to the new tablet. She actually sat there saying to herself, "Go to your happy place, go to your happy place. Daddy! I can't find my happy place!" Haha! The thought of letting go of her tablet was so hard for her - even though the new tablet was going to be better, and she was still going to have all of her stuff the way she wanted.
Now, her tablet is gone. Taken from her while she slept in a hospital that was supposed to be watching her, taking care of her and keeping her safe.
The realization that we had a new, huge problem that we couldn't solve, and that was going to hurt our child, was awful. There is no getting her tablet back. Period. It is gone. We will get her a new one. A better one. And she will have to get over it. She has no choice. We have no choice but to tell her. She keeps on asking if they have found her tablet yet. We don't have the heart to tell her the truth - that they aren't looking for it. They don't care. And whatever employee took it will continue to work there, with access to do it again.
We have had an amazing amount of people that think this was equally as despicable as we do and they have offered to help. My sister-in-law, Kristie, started a GoFundMe and collected just over $1,000. We received an Amazon gift card from friends. And so many friends have reached out to me personally offering to do whatever they could. We appreciate you all so much. I know it must not be easy to have to watch Harlie and us go through so much and you not be able to do anything. We just appreciate that you're there for us. However, if you still want to help in some way, you can donate to We Heart Harlie & Friends. This hospitalization cost us over $5,500. We Heart Harlie & Friends helps with costs like this, not only for us, but for other families, too.
Back to my story, her nurse came in to take out her IVs (the last thing they do before discharge) and Harlie said, "No!" I said what I normally do, "Harlie, don't you want to go home? They have to take them out so you can go home." Then she said, "But, I'm not ready." That is a first. Then she pointed to her face. I told her she can't stay in the hospital until her face heals. And I went on to say that we all love her and think she's beautiful and we aren't frightened or bothered by her swelling or bruises. That wasn't as comforting as I hoped. And she still protested and was extremely uncooperative, which made the nurse call for more help. So, after another nurse got there, I had to step away. Ugh, that was really hard and I had a really tough time keeping my stuff together. After they were done, I took her into the bathroom to get her dressed and she told me that she wasn't leaving without her tablet. Ugh.
That was the most unhappy, uncomfortable exit from a hospital stay we have ever had. And that's saying a lot.
We got in our rental and drove home. We had to stop three times. It broke our hearts to see Harlie hang her head, trying to hide her face from other people. The trip home was actually quite difficult. It is just very challenging to take care of a kiddo (who still needs a lot of care) in a moving car. We had a bag of prescriptions and there wasn't Tylenol or Motrin in there. Luckily Caylee had packed us some, but it was in Harlie's suitcase, which was under everything in the back of the SUV (including her wheelchair we had to break down to fit in the car). So, Tom had to take everything out, open up her case, dig out her home meds, and then put everything back in. All the effort and stress just adds up.
Anyway, we made it home a little after 8pm.
This is how she looked and why she hung her head.
Oh, our sweet girl.
That night was a rough night. We set our alarms to get up to give her meds on schedule. I took the 12:30am one, and Tom took the 4:30am one. After I got up and gave her meds, I couldn't go back to sleep. At around 1:30am she was coughing and sounded like she needed suctioning. So, I went in there and she said, "I keep hearing loud noises." She wanted me to hug her, so I just laid with her for a few minutes until she seemed settled, and then I went back to bed.
I don't like to cry and I've mentioned that several times in my blog. But, I couldn't help it. In that moment, I hurt so, so bad. And I was so afraid. What if her hearing was damaged? What was happening in her head? And I thought about the suicide of the CEO of Longhorn Steakhouse, who took his life after experiencing unbearable tinnitus. My thoughts just ran away and I was so, so afraid of her being in pain that we don't know, understand or can fix. And, all that lead me to an overwhelming feeling of regret. Complete and utter regret. I did this to her. And I hated myself. I woke Tom up, which I felt terrible for doing since I knew he needed his sleep. But, I knew he'd want me to anyway. It was a really hard night. Once I finally fell asleep, I had a dream that I went into Harlie's room the next morning and she looked totally normal, the way she used to. And I knew I was dreaming.
I keep trying to tell myself that this is all temporary and she will heal and everything will be great. But, it doesn't change how hard it is right now.
Monday was a busy day of just getting settled. In the early part of the day Harlie came downstairs to work on her Lego set. While sitting there, blood kept dripping off her chin and it was annoying her. It was annoying her enough that we were able to convince her to let us clean her up. So, we cleaned her wounds as best as we could. But, since her ear is still bleeding, it drips down and then makes the whole wound site bloody, which then dries and becomes a big, unhealthy mess.
Tom has a client who is a plastic surgeon. He reached out to Tom and asked him if we needed anything (like suture removal). So, I called him and gave him an update on Harlie and what we are struggling with (her bleeding from her ear, trying to keep her wound sites clean, etc.). He asked me where we live and said he would come by and take a look at her that night! How great is that?! As much as I feel beat up by the universe, we are so incredibly lucky to have so many wonderful people by our side.
So, he came by and looked in her ear and said he could see her ear drum, so that's a relief! He also had a tool that we don't have, that helped get the caked dried blood off. He was able to get her cleaned so he could see her sutures. The ones under her chin (that go from ear to ear) look good. Her surgeon said sutures should come out 7-10 days after surgery. He took a look at them and said he thinks they need till Wednesday or Thursday. And he said he would come to our house to do it! Yay!
A few minutes after he left, Harlie had blood dripping down her face. I took a picture and texted it to him. The good thing is that you could clearly see that the source of the bleeding is not her ear, it is the top of the incision in front of her right ear. And her drain site in her neck is bleeding. He told me to apply gentle pressure for 20 minutes. I said, sounds easy. Haha! So, I did and we all went to bed. I did the 1:30am meds and Tom did the 5:30am meds.
I woke up to Harlie standing in front of me covered in blood. Yeah, not a fun way to wake up. She wanted to show me her pillow (which was also covered in blood). So, I put her in the tub and got her all cleaned up. I had to empty the tub several times because of all the blood. It was awful. And it wasn't fun for Tom or Murphy who had to take lukewarm showers after I used all the hot water. Oops.
I put her on her bed and had her get on her left side and I held gauze on both the neck drain site and incision for like 30 minutes! Caylee arrived to work and she took over and held it for like another 30 minutes. It will NOT stop bleeding. We put gauze on it and taped it as tight as we could. But, it just bleeds through.
So, I sent some photos to her surgeon and he said she might need some more sutures. Ugh. There is no way she is going to be cooperative for that! So, I'm not sure what I'm going to do about that.
All day today she was really quiet and hardly spoke a word. I wondered if she was just feeling really down. Her swelling is no better today than yesterday. And, honestly, her left eye looks more closed than yesterday. It is really hard to look at. I was thinking that the bath and holding her sites for an hour just stressed her out or wore her out. But, into the evening, she made us worry more. Her heart rate is elevated for her, she was unusually out of breath after walking up the stairs. She's been on Motrin/Tylenol around the clock for a week, so I'm afraid that would mask any fever she might have. And, at this point, she's been bleeding continuously for well over 24 hours. Maybe she's anemic?
So, I spoke with her pediatrician and she said getting some labs would be a good idea. So, we are going to watch her really closely tonight and evaluate in the morning. I might be taking her to the emergency department in the morning. Between her needing stitches and blood work, the ED is the best solution. I just really don't want to take her at night if I can help it.
The good news is that she got her new tablet today. We ordered her a new one while we were driving home from Boston. Yes, we got her the latest, greatest and nicest tablet we could get. I guess not having a tablet at all (and she now understands that she is not getting her tablet back) made her much more agreeable to the new one. She figures things out in her own time. Honestly, Tom and I are shocked (and grateful) that she handled it as well as she did. Tom was able to download most of her stuff from her old tablet onto the new tablet, so it had the same screensaver for example and we ordered her the same cover that she had. She seems grateful to have it. So, thank you to all the good people who contributed to Kristie's GoFundMe and donated in other ways. We are overwhelmed by your kindness and generosity!
Ok, I have to wrap this up. Thank you so, so much for being there for us. I have so much more I want to tell you about (and thank you for) but it is late and I know I won't sleep much tonight, so I have to stop writing for now.
