Sep
27
2008

19th Day Post Surgery – 10:00 PM

19th Day Post Surgery – Saturday September 27, 10:00 PM

Days are starting to run together and trying to get back on a schedule that is cohesive to some family life is taking its toll.  The night shifts have been OK and I have been getting a couple hours of sleep but the most important thing is that Afton is able to be with the kids at night and when they wake up.  I will be happy when we can all be together again!

I think that we will probably get out of the hospital before the house is livable but thats the way it goes.  With the help of a bunch of people I was able to get 100 sheets of 4x12 drywall upstairs and get the insulation in. Monday I have an insulation inspection and the drywall is already getting put up on the ceilings.  So we should see some real progress this week.  There are a lot of people that have helped with the house recently and I want everyone to know how much I appreciate it.  The help has saved me days worth of work.  I am truly grateful.  

Back to Lilee: The plural catheter didn't produce anything this morning.  The nurse was pretty happy about it but I kept saying that it wasn't right.  You don't go from 50ml a day to 0ml overnight.  Especially since this this was the first drain after being moved to a 24 hour schedule.  So from the time we tried to drain all morning Lilee was not happy.  She was breathing differently, wouldn't stay awake for long, and eventually the PA that works with Dr. King stopped by to mess around with the catheter to see if it needed replaced.  He replaced the cap and wamo - we had drainage.  He pulled 40ml without even moving her around.  Its always nice when they drain her chest because she is much more comfortable afterwords.  Afton was just coming for her shift so she got a happy baby.  In fact after I left this is what Afton was able to take a picture of.  Its important to note here that I have yet to personally see the smile but I cant see any signs of Photoshop in this picture so I will have to concede that she actually does smile. 

Feeding today was not the greatest and this is the area that I see becoming very long and drawn out.  Her "portagen allotment" is 65ml every three hours still and she only consumes 10 to 15ml on average.  There are some feedings that exceed that average but that happens about once a day.  To give you an idea 5mL = 1tsp.  So that typical feeding is 2 to 3 teaspoons, and we get really excited with5 to 6 teaspoons.  It is truly is amazing.  

Her medicines have remained constant the last few days as well.  She gets digoxin, lasix, aspirin, prevacid, and Tylenol.  She gets these meds via the feeding tube if its close to or a bottle feed and when thats not the case they give them to her orally.  She likes the feeding tube way better.  She also gets a little shot of heparin in her IV the same time as her meds to try and keep that IV line open..

Comments (4) -

It is so wonderful to hear about the progress with the house!  This is by far one of my favorite pictures of Lilee.  That is definitely more than just gas!  

I found your blog through Stumble and just wanted to reach out to you.  

I have five children also.  Four boys and one girl.  My oldest is 18 and my youngest is 7.  Out of my five children, four of them were in NICU after their birth, anywhere from 8 days up to 35 days.  I know where you are right now.

I pray that God would bless you and your family.  May He give you much needed rest, and many hands to lighten the load.  May He continue to give the Doctors wisdom to treat your daughter.

Children are truly a blessing from God.

Dear Larry and Afton--I feel like I just walked out of the Ozarks when I finish reading your daily report--it all makes enough sense so that I comprehend what is going on but have to admit that it is so amazing what those doctors know and what they can do--but, Larry, they mite not know a thing about drywall--does that make you feel better?  Forgot for a minute that you do have an expert or 3 that you can turn to for some answers.  My guess is that it is quite wonderful to have 3 experts at arms reach anytime you need them.  The Bond that forms at birth and even before birth in all family circumstances--I hope, all family circumstances--is a Spiritual bond and our glorious Father in Heaven provides this bond just for us, Bless Him.  And Bless you two--Talk to you later---Dan Boone

That has got to be one of the cutest pictures I have ever seen.

Add comment

  Country flag

biuquote
  • Comment
  • Preview
Loading

About the author

I am the proud father of 6 Children (5 girls and 1 poor boy).  Our second youngest daughter was born with a heart condition called Hypoplastic Left Heart Syndrome (HLHS).  In a nutshell the left side of her heart never fully developed.  Hopefully this site will chronicle the progress she is making and everyone who is interested can keep up to date.