So Much Has Happened

It's been a long time since I've blogged.  I think it's mostly because I've been so immersed in stuff.  We haven't had a quiet moment in over two months and it has all been so very hard.  I have been robo-medical-mommy for over two months and I feared that if I came here to tell our story... all the emotions that I have worked so hard to keep under control would come flooding.  And with everything we have been through since October 14, I would be absolutely worthless if I allowed myself to feel it all.  People are always telling me how brave I am and asking me how I get through each "event".  The truth is, I only allow myself limited opportunities to feel.  The truth is, if I felt it all... every desat, every blood pressure change, every bad gas, every blood product, every ecmo alarm, every surgery... If I felt it all I would be of no good to my little girl.  And she needs me.

I know several of you follow Sawyer's story on facebook, so you've gotten the updates as they happen, but I bet you haven't stopped to think about just how much stuff she has been through in 2 short months. Here's a synopsis... in order... to the best of my recollection. I challenge you to read it ALL, from beginning to end.

• October 13: we had clinic with our cardiologist and were sent home on oxygen for low-ish oxygen saturations (65 - 70%... little did we know that later we would pray for these numbers)
• October 14: we came to the Riley ER for continued low oxygen sats and a fever with high Heart Rate
• October 14: we were admitted to the Heart Center Stepdown unit for observation and a little "boost" of oxygen through the nasal cannula. 
• October 15-18: Sawyer continued to battle low oxygen sats (now in the 50's and low 60's) and high fevers. Blood cultures confirmed that she had a staph infection that got into her blood, attached to her heart, and grew a large infectious vegetation in her aortic valve. 
• October 18.. morning: Sawyer's sats were steady in the 50's... she could no longer feed... she was extremely agitated, and I didn't feel like stepdown was an appropriate place for us any longer so I called a "cart" which sends the ICU doctors to your room.  They rushed Sawyer over to the ICU and she was immediately intubated.  That only helped her sats for a short time, so she was placed on nitric oxide as well. 
• October 18... night: Sawyer was on full vent and nitric support and we watched as our doctor paced the room coming up with possible solutions. Her shunt was closing, and she needed a patent shunt in order to oxygenate.  The only options were emergency cath lab or ECMO.  He finally got a cath lab doctor on the phone, but then we all watched as her sats dropped to the 40's...30's...20's...We watched as our daughter's oxygen saturations dropped to 1 and then we were out of options.  They called general surgery and within minutes our room was full... an ECMO circuit was outside the door, everyone was in yellow gowns and masks, sterile and ready to put our daughter on full life support.  We went to a quiet room to wait. About 10 minutes in, we received our first update... her heart had reached its limit and they had begun compressions.  The next 17 minutes would crawl by... it felt like hours.  We sat anxiously awaiting an update, yet not wanting to hear what they might have to say.  Try as you might, it's impossible to push the scary thoughts from your mind... then you hate yourself for thinking it... and you pray that just because you thought it doesn't mean it would happen.  Dr. Lutfi comes in.  He sits down beside us and he says "She's on... she's on ECMO."  She made it.  27 minutes of compressions... one of the fastest ECMO cannulations ever, but our girl made it through what would be the first true fight for her life. 
• October 19-20: Sawyer's body got the break it needed.  On ECMO, there is no real need for your heart to beat or for you to breathe.  The machine pulls the blood from the body, oxygenates it, and circulates it back through.  ECMO did all the work for Sawyer in this time.  She was medically paralyzed and mechanically vented. 
• October 21: Sawyer went to the OR to have a new shunt placed by Dr. Turrentine.  Remember, she was on ECMO because her previous shunt failed.  
• October 22: Bleeding. Lots of bleeding.  Like... liters of blood and constant replacement with blood product.  The ECMO circuit is very sensitive to clotting so they maintain high levels of heparin to keep the blood thin... because of the heparin... injuries bleed. Sawyer had a great deal of internal bleeding from her thoracotomy.  She was losing too much blood so it was back to the OR for exploratory surgery to try to find the source of the bleeding. 
• October 24: Bronchoscopy to reinflate lung after the pooling blood collapsed it. 
• October 25: More bleeding.  We had to quickly come off ECMO and just hope that her body would tolerate it.  I can't explain to you how I felt when they clamped her cannulas.  My eyes were glued to the monitor watching her heart rate and her sats.  They clamped and I watched her sats drop 1 percent at a time... holding my breath... wondering when they would stop.  Thank GOD!  70's and 80's.  Her new shunt was working!
• October 29... NEC Watch.  After starting to feed Sawyer again, her stomach got very distended.  Feeds were stopped and she was placed on antibiotics.  We would start/stop feeds about a thousand more times during this journey. 
• Sometime later that week:  We went to MRI.  There is an increased risk of seizure/stroke on ECMO.  After an ECMO run, it is standard practice to have an MRI.  With about 5 minutes left of her MRI, something happened... still not sure what... and they called a code.  They called it over the hospital speakers.  I was sitting in my room watching TV and I heard it. *ding* Code Blue: Simon Family Tower: MRI  ... I heard from the hall "Sawyer? What?" and I saw our team go running.  Thankfully this is what we now refer to as a "mini code" as she only got about 10 compressions. P.S. turns out she had a small stroke while on ECMO.
• In the next few weeks, we tried relentlessly to wean her vent. We were having issues with her CO2 being too high whenever we tried to wean.  We finally got to a point where they thought they could extubate.  We tried... we failed. She was extubated for 10 hours.  She never physically looked good, but her blood gases were stable ... until they weren't.  She coded.  Right in front of me.  I was standing by her side and she went lifeless.  Then, in the blink of an eye... her room was full, she was reintubated, and she received 20 minutes of compressions and countless code drugs.  My husband had just left for the night and I called him "She's coding... come back!" "what?" "SHE'S CODING!"  I can't begin to explain to you what it's like watching your child code.  Watching as a team of amazing doctors and nurses take turns giving compressions... RT's take turns bagging her... people are shouting from every corner of the room "Push Epi... epi is in... how long before bicarb... time, push bicarb... let's get a gas... Where's echo?!?... still no pulses"  All the while.. I'm desperately watching her numbers wondering why  this is happening again... praying that when they stop compressions, she will have her own heart rate back.  I spent a while feeling guilty about this code... like I knew she wasn't ready to be extubated but I allowed it and we failed. 
• November 10: My very dear friend and ICU neighbor lost her baby boy.  My heart broke in ways that I never knew it could.  Sawyer gained an amazing angel. 
• Somewhere in here she had a "almost code" or "could be code".  Her night nurse noticed that her feet were cold and her pulses were weak so he drew a gas.  It was terrible.  Like... really, really terrible.  They were able to use medicine and vent settings to balance it all out, but it was scary.  
• Why did her earlier extubation attempt fail so miserably?  An echo would show that the vegetation from her endocarditis (remember... she still has this!) had eaten away at the tissue of her aortic valve and it was causing a great deal of leaking.  Her body had to work EXTRA hard to pump blood to all the places it needed to... particularly her lowers (kidneys, liver, gut). She, rather emergently, got open heart surgery to correct this and remove her vegetation on November 17. Our surgeon, who we absolutely adore and respect, prepared us for the potential of coming back on ECMO... he prepared us for the potential of not coming back at all.  She was very very sick going into a very very complicated surgery... further complicated by a few respiratory infections acquired by the vent.  Surgery took all day 7:30 - 5:30.  She did come back on ECMO and nobody knew if she would ever recover.  There are not many kids who have two runs of ECMO.  We were very scared. 
• November 17-November 21: Sawyer had a fairly uneventful run of ECMO.  She maintained her blood pressures really nicely and it gave her heart a chance to recover from her huge repair.  She did have bleeding, but instead of pouring out the chest tubes, it oozed from her incision.  
• November 21: Sawyer went to the OR to attempt coming off ECMO.  Success! She had her chest closed a few days later. 
• We would spend the next week weaning the vent.  She had a CPAP (practice breathing) trial to test how she would do off the vent and it went poorly.  From a respiratory standpoint, she did AWESOME, but her heart did not like it.  This was very disheartening.  We knew she wasn't strong enough for another surgery, and started to lose hope that she would ever be able to come off the vent. We decided to give her a couple of weeks on low vent settings to exercise, while her heart had a chance to heal.  It was all about growing and healing at this point. 
• December 17:  Things had been going so well aside from some pretty persistent and unexplained fevers. We were on very low vent settings and Sawyer's heart rate and sats had been looking really good! It was a normal day, then at 3 AM, Sawyer coded.  In the moment, we had no idea why, but there we went.. down that same sadly familiar road.  Room full.. shouting out code drugs.. giving compressions.  I'm in the hall watching absolutely beside myself.  I tried to call Pat 11 times before I finally reached him (it was the middle of the night after all).  I just keep saying "Why is this happening?  How can this be happening? She was FINE!"  It was so scary.  Just so incredibly unexpected.  Shakes your whole world.  Beyond it being a super scary 20 minute code, there was added fear knowing that she couldn't just be placed on ECMO as she had no access for it.  That if the compressions and drugs didn't work.. that would be it.   Beyond it being a code... it was a code that was completely out of left field.  It was just like life laughing at me saying, "You are getting too comfortable, don't you know that things can happen in a matter of seconds with heart kids?  How dare you try to sleep.  How dare you say it's been a good day."  We later discovered the reason for her code was that her potassium was incredibly high.. which would make any one of us code as well.  
• December 21: Only a few days out from Sawyer's code, we were ready to try to take her off the vent.  She had been on the vent for over 2 months at this point.  Her body hadn't had to breathe on it's own for over 60 days.  She had failed her last extubation so miserably.. to the point where she literally went lifeless.  It was scary, but now... Christmas Day.  She is still off the vent.  Only time will tell! 

Phew.  I know that was a lot.  Telling it is overwhelming. But the story of the last few months had to be told so that you all can understand why my daughter is the absolute coolest, most amazing human being on this planet.  Every day I find myself endlessly grateful for her strength, perseverance, and sass. I'm amazed at her ability and drive to soldier through.  When her doctors and surgeons tell us they can't believe she's here... that they can't believe she has made it this far, my heart melts.  There are just no words for the pride I have in her.  I find myself tongue tied just thinking about it.  I want to shout it from the rooftops but I can't find the words... the magnitude... to properly describe how much I love this child and how much I admire her strength and strong will.  I thank God daily... hourly... for my perfect child.  This life is so challenging, but I wouldn't trade it for another.  My daughter is a constant reminder to me and countless others how precious life is, how small our problems can be, how BIG our God is, and how attitude is everything.  She is my fighter... my miracle... and she has my whole heart.