The marathon before the marathon

The best way I know how to cope is by running.  When I applied for one of my running club's invitation numbers for the Boston Marathon this year, I had no idea what I would be up against.  At the time, we were planning on scheduling Mireya's surgery for the summer.  We were hoping to get past cold and flu season, out of the school year, and give her a little more time to grow.  But as always, she had different plans and she needed the surgery now.  When the scheduling department called me and told me they had scheduled her for April 2, I couldn't believe the timing.  Two weeks before Boston.  But in the end, it's really been good timing.  

During my last long run two weeks ago, which was great overall, I found myself overcome by emotion thinking about how much our family would have to get through in the coming weeks.  I saw dozens of Children’s runners out there, and thanked each one.  I thought about how normally the marathon seems so soon after that last long run, but for us it was so far away.  It has been about 6 weeks since I received that phone call scheduling her surgery.  It happened to come at the height of my training, a blessing really.  I was able to channel much of my anxiety into running and focus my attention on Boston instead of fretting over this giant surgery.  My heaviest training weeks came to a close this past Sunday, leaving me the space to focus on this next marathon.  Now to get through these next two weeks and the actual marathon will be a treat.    

The last two days have been a marathon themselves.  Yesterday, we got out of bed at 5:45AM to arrive at the hospital by 7AM.  It was an hour and a half before they took her back.  It was another 2 hours before we heard from the surgeon that they were about to make the incision.   2 hours after that until she went on bypass.  Another 2 hour wait from that point until we heard she was off bypass.  Another hour until the surgeon came by.  And then another 2 hour wait until we could finally get back to see her.  We spent a few minutes checking in with the nurses, then went home to collapse.  She looked great and she was sedated and intubated, so it was the one night I was sure I would be able to go home to sleep.  We didn't get home until 8:30PM.  Today has been another day of waiting around.  When we got here, she was still intubated, with the plan to extubate her shortly.  In order to do that, they had to turn off the sedatives and get her awake enough to breathe on her own.  More waiting.  We waited all morning and finally, after lunch, they were able to extubate.  She was pretty unhappy after extubation and had a stridor, meaning it sounded like she was working really hard to breathe and was making almost a croaking sound.  Her voice is weak and there is some concern they may have knicked her vocal cords again.  Unfortunately, her anatomy set her up for her to be high risk.  The collateral they unifocalized last night was up near her neck, so it would be easy to hit the vocal cords.   She's been pretty upset since she's been awake.  She's still on a lot of drugs and they're still tweaking things with her heart as she adjusts to new hardware and new flow.  She got some more blood.  So two pretty long days.  

The surgery went incredibly well.  Her surgeon, Dr Baird, is incredible.  He is confident and as our cardiologist says, "wiling to take on anything"  We were joking that maybe he'd like to take on Sanders.  He was able to unifocalize all of her collaterals.  He also removed the stents from her right side and said the pulmonary arteries look "normal" on that side.  He was able to place an adult sized conduit.  It is 19mm.  Finally he was able to close the VSD (Ventricular Septal Defect - the hole in her heart) with a 4mm fenestration, which allows for some shunting from left to right, which she does when she gets agitated.  Because of his amazing talent, we may be able to avoid any future surgeries, and do the rest of the work in the cath lab.    Due to the nature of her CHD, in particular the MAPCAs component, she will still need regular catheterizations, though hopefully not on an every three month schedule.  Hopefully we'll be able to space them out to once a year or so.  When we came in to see her last night, she was so pink.  I couldn't stop touching her skin.  For her entire life, she has had very mottled, splotchy skin and a dusky appearance.  Last night, for the first time ever, her skin was beautiful.  

I did get to hold her for about a half hour this afternoon.  She seemed to like that.  She relaxed a bit.  The music therapist person came by and played her "The Wheels on the Bus" and "Twinkle, Twinkle" which she seemed to like.  Then the blood pressure cuff went off and it upset her, so we felt she was safer in her crib.   Since then, she seems to be doing better if she can't see me.  I think I represent escape to her.  She wants to get out of here, and she thinks I can help with that, so I am currently hiding in the back of the room.  For most of the afternoon, she's been on and off agitated.  She will not settle and fall asleep, she's been awake all afternoon, pretty restless, possibly bored.    The anesthesia is also likely affecting her, we think she tends to feel pretty hung over after anesthesia.  She wants to roll onto her stomach, but is not allowed because of her chest tubes.  When we came back from dinner, she was in rough shape.  Gasping for air, despite being on 20 L of oxygen.  We’ve spent the evening trying to decide whether or not to reintubate or not.  They’ve decided she needs the extra support.  

We are hoping that at least one of her chest tubes will come out tomorrow and then she'll really start to feel better, especially as she settles out and adjusts to her new flow and hopefully successfully extubates.  Unfortunately, there's been a fair amount of output from these tubes, so it may not happen.  Each day should be a little better from here on out.  From there, once she is off large volumes of oxygen, we will go to the step-down unit, where mostly, they make sure she can eat and drink well enough and that she's safe to go home.  But that's not anywhere close at the moment.             

We are holding up ok.  We kept ourselves busy yesterday.  We've found leaving the hospital works best for us to keep our mind off of it.  We went to the BCH blood donation center across the street.  I was able to donate some blood.  It felt good to replace some of the blood that we knew she'd be using, especially since I am O+ so most people can receive my blood.  It was a nice morning, so we walked into the city to have some lunch.  Our tradition is to go to Stephanie's on Newbury.  We were hoping they'd have the terrace set up, as it would have been warm enough to eat outside, but it was not.  We had a nice lunch + cocktails then continued our walk.  We walked through the Public Garden then back up Newbury and over to Boylston to see the finish line.  It started to rain as we were walking back, so we hopped on the T and headed  back to the hospital.  We settled into the waiting room to wait it out.  We spent the whole day waiting to exhale, so when Baird finally came out it was a huge relief.   All in all, it was about 11 hours from when we said good-bye until we were able to see her again.  

So yeah, the marathon before the marathon.  Maybe the actual marathon will feel easy after all this.  I do know, that if she is home and on the road to recovery, Boston will be glorious.