Monday, August 7, 2017

Gearing up for Jaw Surgery #5

Hi all,

So, we are off to Boston again. The past few days have been a little crazy.

On Thursday morning I got a call from the scheduler (Amanda) for Dr. Padwa, one of Harlie's  surgeons. She said that the cardiologist at Boston Children's did not clear her for surgery on Tuesday.  He said he wanted some recent studies first, one of which was an echocardiogram. She was trying to get her in during her pre-op day at the hospital on Monday, but their schedule was full that day. I tried hard not to panic. But this has been scheduled since January. There are two surgeons involved with this surgery so getting them both on the same day meant having to shedule far out. I couldn't bear to think of how much longer we'd have to wait if we had to reschedule.

Late that afternoon I spoke with Amanda again, and she told me she had no luck. We entertained flying up on Friday, as there was room in the schedule that day. But, all the flights were booked. My older brother, Bruce is a pilot, so I called to ask him if he could fly Harlie and I. Unfortunately the plane he has access to is down for maintenance. So, Friday wasn't an option. So, I asked if I could get her in for an echo here locally, and I could bring the images and report with me on a disc. She said that she had already suggested that but something about echoes not always turning out, so she didn't think that would work.  I went on ahead and emailed her local cardiologist anyway, just in case. He said he could get her in.

That night was a difficult one for me. Life has been so good for the past two years that remembering how complicated her heart is felt like a punch in the gut. It's stressful leading up to a surgery when everything goes smoothly. This obstacle made it SO much worse. 

The next morning I woke up and sat in front of the computer and I emailed the cardiologist in Boston. I love how accessible all of her doctors are and how quickly they respond. I updated him on what's changed since he last saw her four years ago (decannulated two years ago!). And I also shared how I felt about this surgery.

I don't think I've told you what surgery she's having. Five years ago they removed her fibula from her right leg and used it to create her jaw bone on her right side. Four years ago they distracted that fibula graft (put pins and rods in her jaw on both sides, and we broke the bone each day by turning screws so new bone would grow in between the breaks). That fibula has continued to grow and fused to the base of her skull, preventing her from being able to open her mouth. I was thinking that growth destroyed her TMJ, but now I think I remember she never had it on that side to begin with.

Anyway, we don't know how long it's been that way. I'm guessing a year. Funny how it wasn't as noticeable as you might think. Her mouth has always been very small. Just the sheer thought of knowing that her mouth is fused shut freaks me out. Access to her teeth is impossible, and any kind of emergency that involves her breathing scares me to death (car accident). She also has two rows of upper teeth since her permanent teeth couldn't come in over her baby teeth. There's just not enough room in her mouth. So they are going to extract a bunch of teeth.

Soon after I sent that email to him, Amanda called to tell me that he wanted her last cardiac cath report. Her last Cath was 3.5 years ago in DC. I called there and got someone to listen to what I needed. It isn't so easy to get those kinds of reports (with images). They are huge files and can't just be emailed. It took many phone calls (including Amanda calling the person in DC and talking her through uploading it to Boston) and lots of time and hard work (plus many thank yous!) and they got it done! A hurdle crossed!

I also called and got her in to get an echo at our local children's hospital. I called at 10:30 and they gave me a 12:30 appointment! She did great for that. When I told her she had to have the echo to look at her heart Harlie said, "Oh, my heart is fiiiine, Mom." That kid seriously cracks me up. Its amazing to me that she can have so much inflection in her voice with her limited movement.

The cardiologist emailed me back and explained his concerns. He also shared his note that he sent to the plastic surgeons.

I understand, truly, how difficult it is to schedule an OR case like this, both for you and your staff and for the family.  I would like to do all I can to accommodate, even with this late notice.  However, Harlie has exceedingly complicated single-ventricle heart disease further compounded by comorbidities including restrictive lung disease.  I have not seen her in 4 years, and the available outside records provide scant details.  I regret I cannot provide cardiac clearance without reviewing the data from her most recent heart catheterization (report and angiograms), obtaining a full echocardiogram here, and examining her myself.  Additional cardiac testing may also be required.  It is likely, given the underlying complexity of her disease, that I will want to discuss the findings with cardiology and cardiac anesthesia colleagues to arrive at the best possible recommendations for her perioperative management.  It will not be possible to accomplish this all on Monday.  I wish it were otherwise.

Once I read that, I totally understood where he's coming from. It would be hard to argue with his reasoning. And, like I said, I have "forgotten" (blocked it out, maybe?) how complex she is. Plus, I know how scheduling works and I get that it would take miracles to pull this off.  

He also said...
I can’t tell you how sorry I am that you have to worry about this, especially under circumstances that are already stressful as you prepare to come up for Harlie’s surgery.  I have copied below the email I sent yesterday to the maxillofacial surgery team.  In the interim, I have received the report of the 2/6/2015 catheterization performed at Children’s National.  Our clinic, echo, and pacemaker staff are scrambling to fit Harlie in for evaluation in my clinic on Monday.  I have initiated discussions today with both my cardiac ICU and cardiac anesthesia colleagues so they can be prepared to weigh in on Monday, once we have all the data.  
It is truly wonderful that Harlie is doing so well overall, and I certainly understand the concern related to her jaw.  We all want only what’s best for her.  I will look forward to seeing her on Monday and hope we can agree to move ahead as planned on Tuesday.

Isn't he great?! The bottom line is that I get it. And I am so grateful to him for keeping her best interest in mind. At this point I have to accept that someone didn't communicate all the information to all the pertinent people. And I have to shoulder some of that blame. I should have asked more about cardiology. Must make a mental note to make a bigger deal of her cardiac care, despite my wanting to forget about it.  I just hoped and prayed that the schedule could be adjusted to fit her in on Monday.

I spent all day on the phone or the computer. It was exhausting. Then at 3pm Amanda emailed me that cardiology had worked it out and she had a full cardiology work up scheduled including a chest x-ray, EKG, pacemaker check, echo and a meeting with the cardiologist. Hallelujah!!!  
Harlie getting an EKG.
We also had appointments with all the pre-op people and the other surgeon (Dr. Resnick) since he is new to us and Harlie is new to him. That appointment was at their satellite office just outside of Boston. Our plan was to uber it there.  Amanda said the team didn't want us having to do that with our marathon of a day, so they changed her appointment to meet with Dr. Padwa here at the hospital. Ahhh, thank you!

I can't begin to say how grateful we are to all of the people who worked so hard to help us get what we needed! I feel very hopeful that all of her tests will go fine with nothing alarming and that he will feel comfortable to clear her for surgery.

It is now 1:30 and she has had all her cardiac tests and we are about to see the cardiologist.

It is now 2:30 and that went great! He said that her heart cath numbers were very reassuring. Her heart cath was done after he saw her last, so that was new info for him. I'm feeling so good about myself right now! He said he had never gotten a heart cath report that fast, and he didn't know how that happened. I said that was me! I called them and told them our situation. He said he bet I could be very persuasive. Haha!

He asked me if she ever has chest pains (no, thank God) and I told him about Harlie telling me that her heart is fine. He said, "You should have just emailed me that and it would have saved us all the trouble." Haha! I do love a good sense of humor!  He ended by saying that he wasn't going to stand in our way. She does need another heart cath, but really we are at a standstill with her jaw the way it is. Gotta fix this jaw situation in order to do that.

So, we are a go!! So, so thankful!

Surgery time is 7:30am, and we have to be here at 6am. Surgery should take about 4 hours.

We are about to meet with Dr. Padwa and I think we will be done! Marathon day (woke up at 3:45am) is almost over and its been totally fine/rather enjoyable with all cooperation and no complaints from Harlie! She really is an amazing patient. 

Check out the bling on her shirt! Thanks Lindsay!

It is now 5pm and we are DONE and back at the hotel. We are looking forward to some wine and some sort of dinner tonight. Thank you so much for your continued love and support!
xo, 
Christy

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