Wednesday, October 24, 2012

Oct 24, A "Little" Break From the Feeding Tube

Last night, Lindsey's feeding tube leaked out all over her bed, twice.  The end of the feeding tube has two valves on it.  They are right next to each other and you close them by putting a plug, attached to the side of the valve, in the opening.  We have been fighting this feeding tube since it was put in.  It is always popping open.  The down side to this is that whatever is in her stomach, leaks out the tube.  Whether that be feeds, medicine that was just taken, or any drinks recently drank.  It really makes a mess.  The nurses have tried taping it with all kinds of tape, but it doesn't seem to work.  The only solution to the problem is to replace it.  As this is NOT one of Lindsey's favorite procedures, we have been putting it off for weeks.  After leaking last night it was the final straw and the docs decided it had to be replaced.  Lindsey took out her old one this morning and was free from a feeding tube until 7:00 this evening.  She was determined to prove that she didn't need it, but of course it is obvious that she does need it.  Her appetite just isn't there.  They gave her some ativan to help calm her during the procedure.  It kicked in right as they were starting and she sat and took it like a champ.  She didn't cry or nothing. I was really proud of her!

Lindsey's infection is looking a little better today.  The doctors have asked that we pull back her activity level a little.  She has been climbing up and down some big steps, skipping, jumping and most likely is the cause of the infection.  It very well could be causing quite an irritation to that right side tubing. We consented and agreed.  It was looking better over the weekend and then we took her on a long crazy and active walk and that was the day it looked more red. Child life brought an electric piano into Lindsey's room for her to borrow.  She was really excited, this is a little less active activity that will do her well.  It was very nice of them to let us borrow it. Other than the feeding tube and the activity level there is really nothing more to report for Lindsey.  She had a great day.

Megan won their last game today and will go on to the championship starting Monday.  She is pretty excited.  Hunter went back to school today, had a good day. Lindsey is loving having her daddy back and so am I!  It is good to be back together as a family.  It really seems to make all this "doable" when we are all together.

4 comments:

Anonymous said...

Yay, for the piano!! That should make Grandma Leslie smile and I bet Linsdey has enjoyed the opportunity to let her fingers play a little music, such a nice change of activity for her. I bet the doctors never dreamed that they would ever have to tell a berlin patient to not be so active, just goes to show how amazingly brave and strong little Linsdey Lou really is! Go Megan, we're cheering for you and your team for the championship games! What a great thing to be a part of! Sending our love to you and your family. May the Lord continue to answer our prayers and bless Linsdey. loves, hugs, and many special and sincere prayers xoxoxoxo

Anne said...

We are following your posts closely here in La Grande and are very encouraged by all the positive news. We have you in our thoughts every day.
Anne

lisa mueller said...

I have been following your blog for a few months now. I am always in awe of your families faith and strength. My daughter has seen her share of ICU days (8 months, nearly solid in the CICU) and I know it is no easy task to keep up morale each day. I am truly amazed at the balance you guys keep with all the kids and their activities. You are a beautiful example of the strength God gives us when we lean on Him. I have you all in my prayers everyday. Just wanted to tell you guys we used to have the same problem with my daughter's feeding tube. The side port of the NG would pop open and we would lose the feed, or meds, or stomach content (yuck). I also tried every tape imaginable to no avail. In the end I figured out the culprit was a combo of the greasiness/fat in the formula, and one of her meds which had an oily base to it. To fix the issue I would take a dry Q-tip and insert it into the ports and twist to clean the fats/oils off. The tube extension connection would then be replaced snug and the cap for the side port would also stay snug as a bug. I did this as often as was necessary to keep a snug connection/cap. It took many frustrated nights of "feeding the bed" before I figured this out : ) Hope that helps. God bless you all.

Lisa Mueller

Kay Patterson said...

Lindsey, you continue to amaze me with your bravery. It was good to see Jason and my friend Hunter. We had about an inch of snow this morning. Kellee made a snow man that is slowly melting away. Our hunters have seen lots of elk but all of them on the wrong side of the fence. Elk seem to know when they are on posted ground. Love to all, prayers and good thoughts continue. -Kay