Feeding Clinic- Week 2

Originally published 12/28/12

They say that the difference between a rut and a grave is how deep it is and how long you have been in it.  That said, I think that for the past four years we have definitely felt like we have been in a rut with respect to D&Z’s feeding difficulties.  But it is hard to know what you can do to improve it when you have no medical background yourself.  Sometimes I feel silly just “feeling” like we could do more for them, without knowing how to necessarily make that happen.  As a result, our trip to Kennedy Krieger has been a bit of a leap of faith.  We have been hoping that we would get some results, but truthfully were willing to accept any sort of progress for what it was...a step in the right direction.  

Thankfully, I am ECSTATIC to report that we have taken our first step toward decreasing both boys g-tube dependence!  After completing the boys initial evaluations they were able to calculate the amount of food/ drink that D&Z need to be consuming and start to analyze what steps we can take to decrease their dependence.  Right now, we need to have them eating 8 ounces of solid foods for each meal AND drink another 8 ounces of their high calorie formulas during each meal plus an ungodly amount of water.  They have been reducing the texture of their food from “regular texture” to “wet ground”.  (Wet ground is basically the consistency of oatmeal.)  When given the wet ground textured food they are currently consuming all 8 ounces for each meal!  And...with the therapy they are receiving they are now drinking their formula!  (For those of you keeping score that would be Zac-1 Cup- 1)  Zac is now taking 5 OUNCES per meal!  Dom is taking 2.5 ounces per meal.  This is huge considering they were 100% dependent on their g-tubes for formula prior to admission.  The trick is going to be keeping up with their fluid needs once they are placed back on regular texture.  By giving them wet ground food it is safer for them to eat (AKA less risk for choking/gagging) and it is increasing the amount of water they are taking in at meals.  They need to add water to make it the wet ground texture.)  So it is a huge step in the right direction!  The best news of all was that the doctor notified me last night that they are going to, and I quote, “Start the boys on their first g-tube decrease.”  They are going to start receiving less formula via g-tube and be monitored to see how it impacts their weight.  What was especially exciting to me was the way they phrased it.  You see, if they are going to have their “first g-tube decrease” it means that there could be a second, or third in their future!  It is all very exciting (and yes...I did tear up when they gave us the good news.   This whole process has been very exciting and overwhelming!)

Lots of other good stuff also happened this week.  I saw my first cockroach!  I screamed as it wiggled on the hospital floor; Zac rushed ahead and then proceeded to stomp on it.  It should be noted that no one rushed to my aide when I screamed for dear life.  Thank goodness Zac was there with his swift stomping ability.  When I did finally mention it to hospital staff they calmly said, “This is the city.  We get them here.”  I nearly died...and have not been sleeping as peacefully ever since!  

We also had visitors this week!  Justin and Jay came up for the holidays!  We ended up having to open presents in the lobby since it is RSV season and children under the age of 17 are not allowed beyond that point.  But for what it was, it was perfect.  It was nice to see the boys hanging out, enjoying their toys, and having a chance to spend time with one another.

But Christmas Eve was my favorite.  We took a TLOA (Therapeutic Leave of Absence) and left the hospital for 3 hours!  I know we were really living on the edge!)  One of our nurses told us about a Christmas display on 34th Street and we figured we would check it out.  It was BEAUTIFUL!  Dom and Zac’s eyes lit up when they saw all the lights and displays.  It was really

cool!

Afterwards we headed back to the Ronald McDonald House to meet Santa, hang out, and play a few games of air hockey.  It was untraditional, but fun.  I’m very grateful that we were able to spend the time together. 

 

I hope everyone enjoyed their holidays...I know that I did!  I can’t wait to see what blessings the new year brings!  Happy New Year!