Jan
13
2009
Lilee Afton Foltz

PEG Tube Procedure - One day after Second Surgery

An article by larry 13 Comments

1:00 PM

The PEG tube - can you spot it?

Its the white tube with the square gauze around it.  Not the one with the blood in it or the one with black suture thread (respectively above and below the actual tube)! 

Things are going really well.  Last night Afton and I stayed at home since Lilee is still on a ventilator and completely asleep.  When we came in this morning the suction devices had been removed and replaced with a bulb.  They were getting everything ready for the 12:00 procedure for the PEG tube install (Afton insists its not an install but a procedure - I like install better).  A little before noon all of the equipment carts showed up and everything was laid out.  Dr. King the cardiologist was even here.  After everything was set up they asked us to leave and said they would come get us in about 30 minutes.  So we did, and they did.

Pretty uneventful except the now has a new tube (pictured above) but more importantly the NG tube (feeding tube through the nose) is gone forever!  Now when we get her home you won't be able to tell she has anything wrong with her.

As I sit here they are beginning to wake her up.  Before they completely do that though they will remove the ventilator and taper her off the pain meds.  They want to make sure she can breathe once the tubes are removed.  Once she proves she can do this she will get her pain meds back.  So for a short while we will have a grumpy baby.  We have also been told that she will have a pretty bad headache for a while due to the increase in the blood supply to the brain.  We are not really looking forward to that.  Staying on top of the pain management meds should alleviate that pain though. 

I don't know if I can ever say this enough but we are extremely grateful for all of the love, help and support from our family and friends.  It would be near impossible to deal with this and be here while also taking care of all the necessary things at home.  The meals, childcare, visits, emails, help at home it all really helps.  Both Afton and I thank you and wish there was some way we could thank you all individually.  Thank you, Thank you, Thank you!

 

Comments (13) -

Roxanne Hubbard United States
January 13, 2009 at 3:29 PM #

I'm glad that things are going well. I know sometimes when you're in the "thick" of it, it seems like it will go on forever, but remember where your true strength comes from --- pace yourselves, and keep your chins up. Love seeing the pictures of Lilee and those of all your family. Would love to see more when you have time.

Just a quick question, don't know if this applies or not, but when my dad had a peg tube, they gave him something for gastric upset (Nexium) especially early in the insertion process. I'm sure your doctors know, but sometimes it doesn't hurt for the parents to ask??? Keep us posted. So happy for all of you that things are going so well.
Love to you and yours,
Roxanne

smiths United States
January 16, 2009 at 8:32 PM #

Thanks for such wonderful updates!!  We are so glad she is doing well.  Please let us know if there is anything we can do to help!

The Smiths Smile

Lindsey and Joe Wilcox United States
January 18, 2009 at 9:48 AM #

I'm so glad everything went well! What a stressful time for you guys. You are in our thoughts and prayers.

Love,
Lindsey and Joe

Katie Carone United States
January 25, 2009 at 8:54 PM #

Wow. It really is a miracle that the technology is available.  You're daughter is beautiful.  You are in our prayers!  Say Hi to Afton for me.

<a href="http://www.rayfamilycharm.blogspot.com/" rel="nofollow" class="url">Michael and Bekah Ray</a> United States
February 7, 2009 at 6:54 PM #

Hi Afton and family.  This is Bekah Ray, Michael Ray's wife.  We met you at the BBQ this summer at Mark and Karen's.  Karen directed me to your blog.  I wanted to ask if there is anything we can do to help.  We'd love to come get your kids for a weekend playdate, or just do anything we can do to help.  We aren't too far away and would love to help.

Please let us know!  Our thoughts and prayers are with your sweet Lilee.

<a href="http://www.caringbridge.org/visit/andrewlove" rel="nofollow" class="url">Sarah and John Love</a> United States
February 8, 2009 at 8:50 PM #

Hi Larry and Afton! We thought it was about time for your 2nd surgery and wanted to check in with you. It looks like Lilee is doing really well. I'm glad you were able to get rid of that ng tube. I know that it seems like a step back when you get the PEG tube but the stress relief is SO worth it.  Andrew had his 2nd surgery in December. We also got his PEG tube changed out for a Mic-Key button. We have pictures of the button on our blog if you're curious.

I was searching the web and came across a national organization called "Mended Little Hearts". It's a support group for families of "the littlest heart patients of all". Anyway, I was thinking about starting up a group in Portland. Is that something you guys might be interested in?

Anyway, we should get together sometime. Ali still talks about the time she played with your kids in the waiting room. Send us an e-mail or give us a call. 503-639-5678. I would e-mail you but we lost your e-mail address. Luckily we still had your blog address. ;)

Sarah (and John) Love

Tiffany Haberberger United States
February 12, 2009 at 9:39 AM #

I hope Lilee is doing great!! I found a distant cousin in my family with the same Heart condition as Lilee and my Meleya.  He is 7 years old and 100% boy!!! You would never know until you seen his scar.  He hasn't had any problems been completely healthy. I wish you all the best. Smile

Tiffany Haberberger

Rebecca Lacher United States
February 19, 2009 at 11:56 PM #

She is a miracle....And so beautiful!  

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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.