Post Surgery: Days 14 - 17... No Expectations.

I started writing this post early last night and although EVERYTHING has changed in the last 18 hours, I am posting it all for records sake.  

April 29, 2012 @ 8pm...
In the last few days, we have really gotten a hang of this hospital gig.  We are now in room 408 on the peds floor, which is the 7th room that our family has taken over since the day this whole journey began.

Every day, Londyn is surprising us with how well she is handling this entire experience.  From what we are told, she has been a peach at Gma Milne's and Auntie Nell's.  She has even been able to come visit for long amounts of time, napping with Daddy here at the hospital and enjoying sweet moments with her sister.
{2 hour nap on our air mattress in Zoe's room}

Friday night was the first time I left the hospital since Monday.  Andrew stayed with Zoe, so I could have a night with Lulu at home.  I got lots of snuggles and sweet moments with Londyn, a bowl of top ramen (odd comfort food, I know), a hot bubble bath and 7 hours of sleep in my own bed.  Normally, Lulu waking up at 6am would be the pits... but a 6am wake up call isn't so bad when you aren't up every hour, tending to alarms... a crying babe... or just the fear that your infant isn't breathing.  It was such a nice break, and while I thought I would be nervous and missing the Mr. and littlest Miss, I took full advantage of the short break.

Zoe has been working hard to wean off of the oxygen canula, but just couldn't kick it completely.  Until last night, she had been flirting with 50-30 cc's of O2 and anytime we tried to knock it down to 20, her sats would drop.  When I fell asleep last night, she was set at 50 cc's.  When I got up with her at 3am, I checked her oxygen my jaw dropped when I saw that her oxygen was completely turned off.  On top of that, her O2 sats were in the low 80's!  I was amazed!  It was like she just all of a sudden decided to fly solo and did just that.
{Look!  No oxygen canula!}

Dr. King has been in various clinics since Monday, so we have only seen the other cardiologists in his group this week.  I was so relieved to finally see him during rounds this morning because with all of Zoe's progress, we are ready to bust out of this place!  He said her chest x-ray and echo looked great.  She no longer needs regular CPAP treatments, only as needed.  He said she no longer needs all the monitors and wanted us to stay today and get comfortable caring for her, without relying on the monitors to tell us how she is really doing.  It is so nice to have all of the wires, tubes and IV's off of her.  I was able to snuggle Zoe on the boppy with Londyn on the air mattress today.  It was such a sweet glimpse of my future with these two cutie girls.

{Singing "I'm a Child of God" with my girls}

The best part of Dr. King's visit was when he told us we would probably be able to go home tomorrow!  As long as she continues to do well with her feeds and breathing through the night, she can be discharged tomorrow.  One of the last items of business is the "Car Seat Challenge".  It sounds like a reality tv show for babies... but instead, she will be hooked up to the monitors and must sit in her car seat for 90 minutes - that's right, NINETY MINUTES without her HR or O2 Sats dropping.  They do this test to make sure she tolerates the car seat well, so as not to have any problems on the car ride home.  I'm super nervous because those 90 minutes will make or break Zoe's chances of getting out of here.  Ultimately, I only want to be discharged if she is 100% ready and stable enough to go.  Really though... as much as I have loved and appreciate this hospital, I will not be sad when we bid ado!

April 30, 2012 @ 5:30pm...
Remember when I said that I was going into this without any expectations?  Well, apparently I needed a  reminder!  About 18 hours ago, we had spent an entire day sans monitors and oxygen support.  Zoe had been fussy all day, but we didn't think much of it.  I just assumed she was getting her energy and acting like a normal baby.  Wrong.

We started the Car Seat Challenge at around 10:30pm and after just a few minutes, Zoe's vitals started to drop drastically in every area.  Her O2 sats were as low as 49 and her temperature reached a high of 102.  Along with the nurses, I spent the rest of the night trying to keep her as cool and comfortable as possible.

Dr. King came in @ 7am to check on her and he ordered another chest x-ray labs and culture of her incision that has been having a difficult time closing completely.

When I realized that something was seriously wrong this morning, I was crushed.  The sleep deprivation and overwhelming amount of worry was a bad combination and I was a mess.  Dr. King suggested that I go home and get some rest and our nurse Katie offered to call me if there was any changes.  

After I got home, I took a hot bath and got some good snuggles from Lulu.  I then took a 2 hour nap, spent some time with Londyn and Andrew and then he dropped her off at Gma's, so I could get another 2 hours of sleep.  I took a shower, curled my hair and grabbed a Diet Coke.  It wasn't nearly enough, but definitely made a difference!  I wasn't such a puddle and getting out of the hospital for a bit was SO necessary.

Katie called and left a message, letting me know that Zoe's white blood cell count came back elevated and with the combination of her fever and oozing wound, they are pretty certain that her incision is infected.  They started her on an IV of antibiotics and continue to medicate and re-dress her wound regularly.  The antibiotics helped almost instantly as her coloring is much more pink, her O2 sats are in the mid 80's and she isn't whimpering constantly, like she has been for the last 24 hours.

I am now back at the hospital and by her bedside.  She looks and sounds SO much better!  Dr. King and case manager Tami came by before they left for the day.  Dr. King said that it will be at least 1 to 2 days before we get the results from the incision culture and the blood culture.  If the infection is in the blood, we could be looking at months of serious antibiotics and a tougher bug to kill.  If it is a local infection in her wound, we are looking at 1 to 2 weeks of antibiotics.  Either way, we will be here for AT LEAST another week... if not longer.

Really and truly, we are so blessed and fortunate to have caught this before leaving the hospital.  With how weak Zoe is, this infection could have been fatal if not treated right away.  If we had been home, who know's if we would have down-played her symptoms or been able to recognize the severity of her discomfort.  We'll never know... but we will know that we were and are very lucky to be where we are, in the care of such great doctors, nurses and various therapists... all working so hard to give Zoe the best fighting chance.   


plpamlee@gmail.com said...

what a roller coaster you are on..but the Lord knows best and has blessed you with a great staff of people that care about you and your little Zoe.. take care of yourself so you can be your best self when the time comes to take her home..hugs and prayers always

Amber Kline said...

Yeah my sons first surgery we went home for 2 days an came back because he had a staph infection in incesion site.