Monday, August 29, 2011

NG Tube Reflections

As Callie's time with a NG tube thankfully comes to an end, I have been thinking about our experience with it over the last 5 months (wow, I can't believe it has been that long).  Here are a few random thoughts that have come to mind:

I dreaded getting the ugly tube at first mostly because it was the first outward sign of Callie's special needs.  I did not look forward to going out in public with the tube because I did not want people staring and asking questions.  Up until this point people always just stopped to say how cute Callie was, etc.  We could not go to the grocery store without someone saying something nice.  These compliments helped ease the pain of our reality.  Now suddenly it was very obvious we had a problem.  Just one week after being home from the hospital we hopped on a plane to Puerto Rico and were very public for a week.  At first I was very aware of the second glances, especially as we spent time in airports, but then I noticed people were not looking in a bad way.  Instead they were mostly concerned and curious.  Several people asked if the tube was for oxygen.  With the exception of one person on a bus in PR who starred and then abruptly asked "What is wrong with her?", everyone was polite and caring.  Within a couple of weeks I did not even think twice about it when going out and could care less what anyone thought.

I am not sure if I mentioned this before, but there is a reason I am not a nurse.  I am not good with medical "stuff" and easily get queasy.  I am the last person who I thought would be able to do something like drop a NG tube into a little nose, down a throat and into a tummy, and then calmly check for proper placement.  But I keep learning on this special mom journey that you quickly adjust and surprise yourself at just what you can do when it comes to caring for your special child.  Soon I will be learning how to change out a G tube.  Today that makes my stomach turn and yet soon I will become an expert.  Crazy.

A huge thing I learned is how difficult it is to keep a NG tube in place on a 1 1/2 year old.  Going into this I was not warned and obviously did not do enough research to figure this out.  I would like to share this to hopefully help someone else.  Callie thankfully is mellow and has never seemed annoyed enough with the tube to intentionally try to get it off her little face.  Instead, it comes off when her fingers catch it while she does something like rub her eyes when she is sleepy or rub her nose when she has a cold or an itch.  You can be holding her and watching her like a hawk and it can still come out right before your eyes in an instant.  The worst situation is when she has a cold and her nose runs, which gets under the tape.  It is nearly impossible to keep the tape in place when this happens and the tube can (and does) come out very easily.  The tape also gets loose during baths or going to the pool.  It is a real pain.  This is a huge problem when it comes to her sleeping.  I quickly learned while we were in the hospital that you have to watch her during the night especially when she is feeding.  If the tube comes part of the way out during a feed, formula could get pumped into her lungs and cause major issues.  Just before we were released from our longer-than-planned hospital stay in April, a kind case worker informed me that Callie was eligible for nursing care through Medicaid.  She explained a nurse could come and stay with her at night to make sure she is safe during her feeds which would allow me to sleep and better care for her during the day.  After 9 days in the hospital with no sleep from watching her at night, I accepted the offer and unbelievably we had a nurse come over to the house just hours later that very same night.  I quickly learned this care was a huge blessing.  Five months later I am still feeling blessed and am happy to report that we have two good nurses who have been taking excellent care of Callie this whole time.  Miss "Y" looks after her during the weeknights and Miss "Z" comes over on the weekends.  They have grown to genuinely care about Callie and she in turns adores them.  They spoil her rotten when putting her to bed and I am not sure what I am going to do when they are no longer here!  I wanted to make sure to share this in case it helps someone else learn their child is eligible for nursing care.  If so, I hope you are able to get wonderful, caring nurses like Callie's.  

And now our time with this type of feeding tube is coming to an end.  On Wednesday we will check into the hospital for an endoscopy (to check for any EoE flare ups) and PEG tube placement.  We anticipate a 2 - 3 day hospital stay.  I am dreading the whole G tube thing and yet very much looking forward to just getting it and moving on.  I am focusing on how much tube feeding is helping her grow and develop.  The progress she has made since March has been incredible and we look forward to seeing her continue to thrive!  Thank you for your continued thoughts and prayers!

Wednesday, August 24, 2011

Little Daredevil

We have a little daredevil.  Well, we actually have two of them, but I am writing about the littlest.  I mentioned before that Callie loves to swing (the higher, the better).  She also gets a kick out of being bounced & thrown around on the couch and enjoys any other gentle roughhousing you can come up with.  She laughs and laughs, and then signs "more"!  At therapy Callie was recently introduced to their trapeze and she LOVES it.  Her therapist holds her hands on the bar, swings her out over a big pillow and then lets her drop.  Callie originally did this as part of an OT session.  Now she begs her PT and ST for the same activity since we work in the same gym right next to the trapeze for all of her sessions.  The other day during speech therapy she kept eyeing the bar, made her way across the mat to it, and signed "up".  There was no way to resist her clear request!

Thursday, August 4, 2011

On the charts!

Callie had a weight check at the end of last week.  I am very happy to report that she is now officially on the charts!!  Here are her stats at 20 1/2 months of age:

Weight: 20lbs, 15oz. (4%)
Length: 30 1/2in. (8%)
Head: 45 1/2cm. (16%)

Callie's weight to length ratio is 25%.  Her pediatrician was very pleased with these numbers and we are thrilled about her recent growth and development!


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