Tuesday, August 8, 2017

Surgery day

Hi! All is well here so far. She had a good night's sleep and woke up early and in a good mood. Yesterday we had to wake her up at 4am, and today at 4:45am, and no complaints from her.

All went well during check in. Risks were nerve damage to her forehead and right eye and airway issues. They said they had a trach ready, should she need it. They plan on keeping her intubated because she has an increased risk of excessive bleeding due to her cardiac issues (her circulation is different because it's been "rerouted"). They are going to wait and see how she does. So, no hard plan as to when they will extubate (hopefully this afternoon) and they might extubate in the OR to provide the safest conditions. Time will tell. But I'm betting she'll be fine and won't require that.

She went back like a champ, in a good mood with ZERO stress, worry or anxiety of any kind.

11am: Dr. Padwa just came out to say she was done and Dr. Resnick was finishing up. They took a fat graft from her abdomen to put in that area. She said she thought that was the hardest part - finding fat on her! I am NOT surprised. Tom said he'd be happy to donate some of his, but they didn't take him up on his offer.

12pm: Dr. Resnick just came out to tell us he's done and that all went well. He thinks her nerves are going to be fine. She might have some muscle weakness in her eyelid and right upper cheek, but he expects that to go back to her normal at some point.

They removed about a centimeter of her jaw bone to release it from her skull. That's where they put the fat graft to try and create soft tissue scarring to try and help prevent it from fusing again. Although both surgeons said it could grow back and we would have to do this again.

He extracted 8 baby teeth and the 2 permanent canines that were sideways in her chin. The permanent ones were too far gone to try to save (as you can see in the pics above and  below). One, it would've taken heroic efforts (which no one wants to ask that of her because it would be very painful) and two, in the attempt to save those two, it could cause the loss of other teeth. And really, there just wasn't room for them.

The unfortunate result is that the canine that the arrow is pointing to was helping to support the tooth beside it. So, now that the support is gone... We'll just have to see.

The other unfortunate situation is that she will get a Therabite to help her open her mouth and try to keep her bone from refusing. This is an image I found. I have no idea if this is the same device she will get.

And her front teeth on the bottom have only a little bit of bone supporting them.  Also, she has no molars on the bottom in the back (circled in the xray pic above) so there's not a lot of support overall to distribute the pressure when she bites. And it might be really hard on those front bottom teeth. Add that to the mix of losing the support to that bottom tooth and I don't know how I'm going to make her use this thing! It's damned if you do and damned if you don't.

Here are her teeth...

Wow, those permanent ones look scary. That's gotta hurt! She has now lost at least 17 teeth in the operating room.

5:30pm: So, no extubatation today. She's on too much breathing support (ventilator). They think she might have some atelectasis (collapsed lung) and/or some blood got into her lungs.

The major problem with that is that she really shouldn't wake up. Generally, you don't want to be awake with a tube up your nose and down your throat.

Soon after she got moved into the ICU and we got to see her, they took a chest xray and said her tube was way too high. So they had to push it back down. There was still a lot of people in her room and Tom and I didn't really want to get in the way, so we left to get some lunch.

She seems to go from resting to awake very fast and it's very unsettling to watch her struggle. She is trying to sign water (her arms are restrained to keep her from yanking out her tube). She spit out the gauze in her mouth. So we wet a toothette and just put a little in her mouth.

Her blood pressure is low, they have been working on that all day.

She just moved over and woke up. The nurses came running. She really can't (meaning she shouldn't) pull that tube out because its just too risky of an airway (hence the critical airway sign above). Several people came to help and  Tom calmed her a bit, but they gave her more meds. Its really crazy how much they've given her already (Dexmedetomidine, Propofol, and another one I didn't recognize).  She's on a Fentanyl and Dex drip now.

She totally understood what Tom said and she tried to talk, but no sound came out (the tube goes through her vocal chords). She is way more aware than I would like her to be. The respiratory therapist just came in and said she had to increase her breathing support. NOT the direction we want to go. I really hope that they can safely extubate her tomorrow. She would be so much more comfortable. But I guess at this point her lungs have to be able to support her. Ugh. Her poor lungs. As strong as they've gotten, they are still so fragile.

Okay, so things aren't great. This is never easy. It hurts so bad to see your child like this. Hopefully tomorrow will be much better. I'm already hating that Tom has to leave tomorrow. I focus on Harlie, and he focuses on me.

So, I'll leave you with this pic from last night. Tom was removing her toenail polish. I love her little giggling face.

As always, thank you for the continued love and support!



Aunt Sandy said...

So love you guys. My heart hurts for you all.

RunHapi13 said...

Thinking of you all. ❤️