Friday, September 3, 2010

Fortunate Friday...g-tube and all

Yesterday was one of those days...those kind of days that you think everything is going a little too perfect. Yeah...I let my guard down. I should have realized that I can never get too relaxed, too "OK" with everything. I actually was writing a "Thankful Thursday" post last evening (in between doing this and that for the kids). I was writing about how I am thankful for how good the kids were being yesterday. I mean...they were actually getting along...not one fight! It was very, very nice. I went on to write how I was thankful for how good Kenny did on his third day of school. After getting the 5 other kids to school...without any problems...and we even got there early, Gina and I drove Kenny to school. We parked and his teacher opened the van door. I got him out of his car seat, put his backpack on...then I waited for him to start with the crying thing that he usually does...NOPE! He walked over to the open van door and put his arms up for his teacher to hold him...and that was it! Not a tear shed (from him anyways)! The feeling I was experiencing was such a great, joy. I mean, my little boy is able to break away from me now without crying. He gets to do fun stuff. He is learning and getting therapies. I am so grateful for this.

Fast forward to picking the kids up from school...They all got home and did their homework. Sydnie and Kayleigh, Taylor and Morgan...and even Tony. Kenny was actually drinking from a sippy cup...he grabbed one of the girls cup and just was walking around drinking was filled with juice which is another big step.
So, as you was a very nice day. A day to be very thankful for...until around 8:00 pm. that is. Dun dun dun...

Why does everything have to happen when my husband has to go to, or is at a job? He was at the school putting up names on the banner for the PTU when my son, Tony calls him to get home...why you ask? HA...Kenny's G-tube came out! Talk about a mom trying to say calm but slowly losing it...yep...that would be me! Backtracking just a few...

Kenny was very sitting in his highchair and I figured...ok...well, its almost 8:00, so I am just going to start his night time continuous feed while he is awake. Got him all hooked up and it was going just great when he ended up falling asleep in his highchair. I unhooked the long tube that is connected to the bag but left the smaller tube that locks and disconnects one piece to the other...I figured I'm just going to carry him up and re-hook him up to the pump. Tony (little) was carrying the pole with the pump and bag attached to it, upstairs., when I pulled out the tray of the highchair and then proceeded to lift Kenny out...and THAT'S when I felt a lot of fluid pouring out onto my hand and all over him! He started screaming, I looked down and his tube was laying there...balloon inflated and all! I thought...ok, ok...I can do this. They told me when he first got the tube in that if it came out, to put the tube back in (balloon deflated) and get him to the ER within 2 hours so the hole doesn't close up. I didn't know which way to turn. Kenny was crying, I was standing there holding this tube that was once inside his stomach and I couldn't for the life of me figure out how to deflate that stupid saline filled balloon to put the tube back in! Talk about panic setting in! UGH! Then...I took one look at his g-tube site on his stomach and it was bleeding! UGH!!!! I was just going to drive him but I wasn't sure it it was safe...I mean, he had a hole in his stomach...and not to mention I was just too upset. Tony came home at this time (thanks to the kids calling him to tell him) and we decided to just call 911 because they probably would know what to do. Talk about feeling like a newbie to all of this feeding tube sucks! I mean...its a great thing...I have to say that. I can see the difference in Kenny since he's had it...but between the infections and this popping out... I am becoming a very strong stomached person. LOL. Our days are definitely not boring that's for sure!

So we (Kenny and I) went to the ER again...with our two favorite paramedics, who happen to be working every single time Kenny needed the ambulance. We were there for about 3 hours...they put a new one in...yes, Kenny screamed, but its in and all is good.

This morning he woke up with the other kids and got on the school bus for the first time this school year...again...without tears...from him anyhow.

So my Thankful Thursday post is now a Fortunate Friday post.

I am so fortunate to have a great support system of family and friends...those friends that have BTDT (been there, done that) with issues that we are dealing with with Kenny have been a God send to me. I sometimes feel like Tony and I are very alone with the struggles of having a micro preemie who now has special needs...not just developmental, but medically. It can take a tole on a person...with all that it entails. Tony and I have learned to go with the punches and not let our guard down (except for last night), and to hold every moment very near and dear to us because, honestly...we just don't know what tomorrow will bring. We have been knocked down time and time again with one thing or another...we thought that the NICU stay was the worst that could/would happen...boy were we wrong. Not saying that having the g-tube pop out is a horrible thing...It is actually one of the easier things that we have faced. It just so much that this little guy...our family...has gone through in a short 3 years...sometimes its just overwhelming to think of everything we have been through (as a family) and yet, we are still here and still going strong (even though we are very exhausted from it all and could use a break...this testing us is getting old...tee hee).
I am so fortunate to have everything that I have no matter how hard it has been.
Now I must end this post because I have cleaning to do and setting up for a Camp Rock 2 viewing party that I promised the kids we'd have. They have invited some friends from their classes over so...this should be a fun time. You know me...I love throwing parties!


Life's Happenings said...

He's jumping amazing hurdles. Sippy cup? Major! Holding his arms out to his teacher and recognizing a routine? Phenomenal.
All after a night at the emergency room.

My oldest son was born with a digestive order and gross motor delays. There were time days I wondered if he would ever learn to walk.

Today, at the age of almost 10, he is a seasoned jazz dancer and a runner. Nothing held him back.

There are no limits for children who are determined to overcome any obstacle. Just look at your precious Kenny.

Keep up the wonderful work!

John and Jenna Gensic said...

When Mikan had a Mic-ey inflatable balloon g-tube, we went through last winter with it bursting every couple weeks. We went through 6 g-tubes in a month. We always had a back-up, so thankfully we never had to go to the E.R., but he always had irritation at the site. In fact, every since he had one placed at around 6 months old, he kept getting infections and nasty granulation tissue to form. Our blog archive lists many complaints with the dreaded thing.

But last January, desperate for a solution, we switched to a Mini-One non-balloon. It has to be placed in a doctor's office and can't be changed at home, but it lasts for up to a year. We have had ZERO problems after switching to this one. It hasn't come out (because there is no balloon to pop it), and Mikan hasn't had any irritation. It just magically disappeared.

If you keep having problems, ask his GI doc about the Mini-One. We found out about it when we switched from a pediatric surgeon to a pediatric GI doctor.

Good luck, I empathize!