Surgery Take 2

Hi all!

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.

Much love, 
Christy xo