Sunday, July 3, 2011


I spent a good amount of time looking out our window last night. It was the best view we have had from the few room changes throughout the week. It seems that the longer you stay inpatient, the more emotional and sentimental you it the lack of sleep or extreme awareness of the delicate state you live in...the emotions do seem to go into hyper drive during each stay in the hospital. I spent a good amount of the evening looking into the nicely manicured palm trees that peppered the entrance of Shands Hospital. Across the street stood the lighted windows of the VA hospital and the fairly new Cancer Unit for Shands. I spent some time wondering who may have been looking out of those other lighted windows onto one of the busiest streets in our city. Who else was laying their head on a pillow that was not their own?

I was also spending that time thanking God for placing us in a home just a few short miles from a wonderful Children's Hospital...a few short miles from numerous specialists trying to figure out a way to improve the life of our littlest Ferrell. A few short miles from nurses and PCAs and therapists who want our dear son to succeed to his greatest ability in this life. I am exceedingly thankful that God has placed us in this area of our country...that is where my thoughts were as I looked onto those perfect palm trees encircling our hospital's entrance last night.Nathan is home tonight. He is currently tucked in on the couch in our bedroom with his feed running. We finally convinced him of wearing a pull-up tonight. After being in big boy undies for a year and a half, that was a hard thing to do. However, when a child has almost 470mls of fluid running into his body while he is sleeping, he will indeed have to "void" some of that fluid during the night. A pull-up is a must at this point!
During our second stay inpatient this week, we realized that Nathan was not doing well because his feeding rate was set too high. After playing with the rate a little, we found that his magic number seems to currently be about 35ml/hr of feeds. Once his body starts responding favorably to the feeds without the aid of narcotics, we will start to increase his rate to see if we can get him at a higher rate.

However, due to his struggle with feeds, we realize that the need for a trial with the gastric stimulator is needed (with numerous docs agreeing), and that if the stimulator does not work, a GJ tube may be needed. But, we want to give the little guy a little more time to prove us wrong. The post-op period has not gone smoothly like we had hoped, but we are still hoping that his motility shows some improvement with the feeding change.Anyway, the little guy was discharged again this afternoon. He made the rounds of goodbyes and hugs to the nurses on the floor. It doesn't matter what nurses you have in a visit, you get attached to most all of the nurses on the entire floor. They are amazing little earthly angels in this unusual life...people who you become attached to due to their personalities and intense love and devotion for your own child. They are people who you trust and rely on for physical, mental, and even emotional help in a life that needs constant medical intervention.

For doctors, you are usually on your game...questions at the fore front of your mind, stellar attention at every word they say, astute biding to their requests...but for nurses and therapists and other helpers, our minds and tongues are more free to explain what is in our brain and thought processes. I have never cried in front of a doctor. There seems to be some sort of mind barrier that is automatically put up when a doc comes into the room that shields me and them from the emotional outpouring of a heartbroken parent. But in communication with nurses and PCAs and therapists, my motherly heart is touched in a different way.
Being in the hospital stinks, plain and simple. While in, we are continually exhausted, sore, and emotionally spent. I lost 4 pounds this week alone (I am one of those weird people who lose weight when under intense stress instead of gain it). But being in our hospital, where the people we encounter every few minutes bring intense joy to our day, makes it more palatable. I thank God for those precious doctors, nurses, PCAs, med and nursing students, therapists, janitors, and others who spend their days walking the corridors of a hospital. Relationships in our daily life bring joy...and this rings true even in circumstances where we normally wouldn't imagine. I am exceedingly thankful for the blessings of various people in our lives. And I am even more thankful that our little guy is home...and awaiting the arrival of his Nana and Pawpaw (my parents). Relationships with others mean so much to us...and grounding family relationships make us feel more secure amongst the daily struggles of this difficult life. God has given us so many tools to remain joyful and thankful during our days on this earth.


Kyla on July 4, 2011 at 12:50 PM said...

Glad you are home and have found a feeding setting that is tolerable!

How much is Nathan used to eating/drinking orally at a time? We found that we had to start small to get KayTar's tummy used to larger amounts initially because she just never ate or drank much at once, but now we're up to 4 bolus feeds a day, 240 ml at 480 ml/hr. It was a process, though. When she gets sick or rundown, sometimes she can't tolerate the same volume and we back down temporarily. It is all a learning experience and there is lots of playing it by ear involved for us. Good luck!!

Anonymous said...

So happy you are home and amen to this post. Thank God for kind nurses--they can be ministering angels.

Our baby never made it past 32ml/hr 24/7 until the GJ at 18 months old. Now she's on 35 into the J.

(Did they tell you to use a pin--either Dritzpins or safety pin around a looped piece of tape to keep the tube secure to his clothing?) No one told me that and the entire button came out when it got snagged once. Feeding Tube Awareness on facebook has tons of helps and tips (a public posting group).

Amy B.

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