Harlie's original hardware removal date was May 12th. They put the metal in March 6th. Of course they shut down surgeries since then, so our date has been unknown. We did know that the 12th was cancelled, but didn't get the new date until last Monday, a week prior to the surgery. And that was after much discussion with her surgeon (more about that in a minute).
Honestly, that worked out okay because we didn't think about the original date very well. May 11th was Murphy's 16th birthday. So, if they still did surgery on the 12th, we would've missed his birthday. That would've been terrible. And there are limited flights now. There used to be several flights to/from Boston per day - now there are only a few per week. So, we would've had to fly to Boston on Mother's Day. So, all in all, waiting one week worked out better.
I have had some conflicting feelings about this surgery - a mix of excitement and fear.
I am so excited for her that she will be free from this metal. While it doesn't look that bad from afar, the individual pin sites are still painful for her. We started with having to clean her pin sites twice a day. After a while, we were able to go down to one cleaning per day. Lately, some days we have to clean twice a day again. It is like her body is trying to get rid of the metal. So, soft tissue is growing out of some of the pin sites and cleaning it, or touching it causes them to bleed more.
I was terrified of having to bring her out of her protective bubble and put her on a plane and take her to a busy city and into the hospital. Her surgeon and I discussed this at length during a video conference a few weeks ago. He said we do not want her to get this virus - and that is so true. But, this metal cannot stay in forever. And that is true, too.
We have a known risk with the metal - we are lucky she hasn't had an infection yet. We have an unknown risk of her getting this virus (or any virus for that matter). I don't see how we can make the unknown risk more important than the known risk. After speaking with nurse friends in the field, that has proved deadly for some (people not seeking medical attention out of fear of being exposed to the virus). And maybe it is better to travel while people are still not traveling as much versus waiting for things to pick back up. And what would we be waiting for? And for how long? Because that metal doesn't care about what is happening in the world. Her surgeon agreed, so he put her at the top of the list for surgery once they opened back up.
At first I was thinking we are risking her life going. We are also risking her life not going. But, honestly, we cannot live like that. That isn't living at all. I cannot live so fearful. I suppose that is because we have been doing this for 13+ years - not two months like most people. We have to trudge forward, whether we like it or not. Normally, I would say "and make the best of it" but that feels like too lofty of a goal right now.
Luckily, Tom was able to get the same Air B&B we stayed in last time, so we knew what to expect. This sounds like nothing, but when you are already stressed about every little thing, this is a welcome comfort. And he was able to talk to the owners and they said that the place has not been rented in a few weeks, so that is great, too.
Earlier this week, I received a call from a nurse from Boston Children's Hospital. She gave me all the details of our pre-op appointments on Monday. Harlie will be tested for the coronavirus Monday morning at 8am. She told me they are doing drive through testing and she continued to give me details like, "the patient needs to be sitting behind the driver" and "you will see all the nurses in full PPE, they are changing between patients." Okay, but, we won't have a car.
Silence.
Me: So, I guess we can just walk up and walk through?
Her: Um, no. We've actually turned away patients who didn't come in cars. Some patients take a taxi.
Me: Insert blinking here. Processing information...
If the nurses are wearing full PPE, how is being in a car with the windows down any safer (and for who)? We are just wearing masks - they have full PPE on. Does the virus know you are in a car vs. just standing there? Does something change in the air between a car window that doesn't happen when there is no car? And you think getting into a TAXI with a STRANGER that OTHER strangers have sat in is safer than me walking my child with heart AND lung disease (who cannot wear a mask, by the way) into the garage?
I get safety and am all for it - trust me. I am the mom that took my kid out of school in her 2nd grade to keep her safer. I've been washing my hands diligently (without being told) for YEARS. I've been avoiding places where kids gather for years. But, seriously, I don't get this rule. One size doesn't fit all. Have a medically fragile child and you'll get that fact. I'm going to have to come back to that later.
Anyway, she agreed with me that this was pretty crazy, and really made no sense. She offered to fight it for us. But, I have to pick my battles. And, this isn't one I wanted to fight. I told her the easiest solution was for us to rent a car. I wasn't super comfortable with taking an Uber from the airport to the Air B&B anyway. So, this just pushed me over the edge.
My problem is that we don't have gobs of money to throw around. Times are hard right now and kitchen renovation projects aren't selling like they used to. And when your one income in the house is very much adversely affected by a tanking economy, we have to be a lot more frugal. You'd think traveling right now would be cheaper - but our one-way tickets to Boston were the most we've ever had to spend - $263 per ticket (not counting luggage fees). Plus, parking isn't provided at the Air B&B, so we really didn't want the extra headache of having to worry about a car the whole time. Especially when the walk is easy and good for us.
Anyway, we will make this work. I did ask her if there was anything we could do about the 8am arrival time for testing. Her actual pre-op is scheduled for 1:30 IN the hospital. And an 8am time is a hard time to have her up and ready and already there. But she said it takes four hours to get the results of the test and they have to have them back before her 1:30 appointment. Huh, I didn't know they had four hour tests. So, I said, got it, 8am it is.
I was thankful for her kindness and reasonableness - I never felt like she didn't understand. In fact, I feel like she was so empathetic that we had to travel with her. It was a conversation - not an argument - how refreshing! I told her I would rather save my battles for more important things. She gave me her number and told me to call her. Haha!
Moving on...
Our flight was at 10:30 this morning.
Not a lot of people around. Such a difference from the way it used to be. But, of course I'm not telling you anything you don't know. The airport was depressing. Getting the rental car was depressing and frustrating. Tom got a message to go to the fast pick up in the garage. But then there were signs that said that was closed, so we went back to the counter. And despite the airport being a ghost town and being the 2nd in line (when we rented a car from here to get the boys from summer camp, we have waited for an hour or more!) it still took forever. Everyone is miserable. Whether they are pissed they have to work, pissed they have to travel or just pissed because life is so hard right now - it has created an unfriendly environment. It really is a sad thing.
In Richmond, only one security area is open, so you go through there and then if your gate is at the other end (as it was in our case) you get escorted by staff through the exit to your gate.
The plane was definitely not full.
Tom took Harlie duty on the flight. She is so sweet, but man is she high maintenance on a flight. So needy with all that oxygen monitoring and stuff.
On the shuttle bus to the rental car area.
I promise you, we thought through every extra exposure. Do we drive or fly? Driving means a 10-hour trip and having to stop for food, gas and bathroom breaks in busy gas stations. Do you Uber or take a rental car? But, taking a rental car means having to take the shuttle. Ugh. Thinking through these decisions like a life is at stake is exhausting.
Places that are normally bustling with people...
Harlie taking a selfie with us.
She's happy. And she's oblivious to what is going on in the world, and we are thankful for that. All this girl is thinking right now is that her life will be better without that metal. Tom asked her the other day if she was scared or worried about her surgery. She said, "No, it will be just a little bit of blood." This sweet girl is tough as nails.
As always, thanks for reading, thanks for caring and thanks for all the unwavering support. We appreciate it more than you know.
Much love,
Christy xo
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