The Story of Lillian Part II

It only took about a scant 60 minutes to fly Lillian from Albany to Syracuse.  She had been rushed by ambulance from St. Peter’s to Albany International Airport and arrived at Hancock International Airport.  Luck was on her side as it was apparently a slow day for the New York State Troopers on I-81 who gave her (so we were told) not only a police escort through the city, but that the police also went ahead and shut down intersections and ramps to allow her to get to the hospital as fast as possible.

She arrived in poor state, and it was quickly assessed she needed ECMO.  This involves a surgical procedure where a cannula is inserted through the artery in the next directly into her heart.  Another tube runs from her neck down into a machine which warms it and adds oxygen to it before returning it back into her through her neck.  That was only one machine, there were many, many more and lot of other wires and things sticking out from her.  She looked like some sort of sci-fi experiment gone wrong.  We arrived at the hospital and were quickly shown to where she was.  She would have 3 nurses monitoring things at all times as well as a Doctor on call.  When we first saw her you wanted to puke, its the only reaction you can really have.  But on the other hand she looked so much better.  Her color was pink, she was no longer vibrating from the oscillator and it was the first time we got to really behold her.  We talked with the Doctor for a few moments (a really strange lady), when the nurse who had been on the transport team, looked at us and said “She is doing well and I expect she will have an uneventful night, get some sleep.”  It was all we needed to hear.

My parents rented two rooms at a nearby hotel, in the morning Danika and I would go to the Ronald McDonald House and get set-up there.  We had no idea how long we were going to be in Syracuse.  Between 9 and 9:45 (and again at 4) the NICU is closed to everyone, so that the Doctors can make their rounds.  At St. Peter’s it was a small one room NICU, this NICU took up the entire floor, and it was filled to capacity.  There was really nothing for us to do, we stopped in every morning got an update and then left.  There was no place to sit and you couldn’t touch her.

The next day she was stable, stable enough that the nurses finally gave her a much deserved bath.  She even pooped during the night showing that her body was relaxing.  Tests showed that the pressure in her lungs and arteries were slowly going down, but she was still in a lot of danger.  Because the blood is being taken out of the body and all the tubing in treated to be as free of particles, there is a significant chance of blood clots.  As a result they had her on high doses of blood thinners, which in newborns can cause bleeding in the brain.  She got an ultra-sound every 4 hours to monitor.  Danika and I got set up at the Ronald McDonald House, which are amazing places.  They are stocked with food, movies, cable TV anything you need to take your mind off the fact your child is very ill.  My parents stayed in the hotel.  Then the flu hit.

We were sick, myself, Danika my parents all of us.  We even got a phone call from back home that Sophia had come down with it too and was trying hard to vomit on the cats at my aunts.  As a result we had to limit our time with Lillian even more, which wasn’t a bad thing.  We spent half an hour a day 15 min in the morning, 15 in the evening.  We also called several times for updates (its quite the process to get a phone update you have to give the secret password and such).

By Saturday, the pressure had reduced significantly and she was tolerating the ECMO and medications well.  She was still mostly sedated because of the cannula in her heart, but apparently one night she fought the nurses tough and they actually had to up her dosage!

We still were sick and spent most of the day sitting in the hotel room watching TV (The Ronald McDonald House had cats and so Danika was double miserable).  On Sunday, things had settled down enough that we could actually return to Albany to get things we forgot in haste and generally check in with the world.

At our Sunday evening update, they told us they felt she might be able to bee weened off the ECMO machine, that her lungs were recovering and the pulmonary pressure was significant reduced.  By the next morning when we called, they not only had weened her, they took her off it completely!  The first time they tried, they saw no change in her oxygen levels, the more they turned the machine off, the more her lungs took over.  Once off the machine she was out of most of the danger, although she would still have a long recovery.

On Tuesday morning, when we called we got some even more surprising news, that she was being sent back to St. Peter’s in Albany.  Apparently St. Peter’s had been calling daily for updates on her and were only more than happy to take her back to finish her recovery.  This was very unusual for them, and she was likely the first ECMO baby ever returned to them to finish treatment and the Doctors and staff were only too eager to get the chance.  Before we knew it, she was on an ambulance back to Albany and so were we.

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