The good, the bad and the yucky.

-

When Case was tiny and in the NICU I knew that if he didn't eat and grow he would get a G-tube placed. I was relieved that he was sent home tube free. I don't know why the G-tube made me uneasy back then but it did. Maybe it was the unknown of it all.

Well, at age 11 months we bit the bullet and he got the dreaded tube. After 11 months of forcing, begging and pleading with him I stopped fighting the inevitable and buckled up for the G-tube journey. I have to say, I am very thankful for it. Without it Case wasn't thriving enough.  He was loosing weight and looking sickly. He now is gaining around a pound a month and has filled out nicely. The G-tube is a wonderful gift that has enhanced his life. That's the good.

The bad is that what he eats by mouth has dropped significantly. It's almost like he knows the eating by mouth is hard work for him. He'd rather just sit and be fed through his trusty tube Also, with feeds as frequent as they are he is rarely hungry. Some day down the road we will start focusing on feeds by mouth but for now we rely on his tube to sustain his beautiful life.  Oh and one more "bad". Clothes! He can't wear those cute zip up pjs and it's a pain in the butt unbuttoning onesies all the time to hook him up to feeds. A friend of mine and I are thinking up some ideas on how to put "Mic-key pockets" on his clothes.;) I'll keep you updated on that.:)


So now, for the yucky. If I got a dollar for every time I poured Pediasure on my lap, spilled it on the floor or forgot to close the medicine port I'd be a millionaire. One time I forgot to close the medicine port (a little "hole" with a cap at the end of the G-tube to put his Meds in) and his Pediasure leaked all over the crib. I checked on him in the middle of the night because he was crying but just patted his back and didn't notice it was open. By morning, him and his bed were covered in the "feed" thar was suppose to be in his belly. Poor baby. Also, if I'm not careful (which, generally...I'm not) I end up getting stomach juices on me by forgetting to close or clamp something. Also, we had another accidental Mic-Key button yank out last week. This time there was no need to rush to the ER. It has been long enough that I can now place new buttons on my own. Just because I know how to place a new Mic-Key in an emergency, doesn't mean I want to!;)

All of the bad and yucky aside, I have grown to love his Mic-Key and am forever grateful for that life-saving device.;)


It turns out there is a feeding tube awareness week! I just missed it! It was February 5th-11. I suppose it's beter late then never.;) I have listed some links to some resources if any of you are interested:


http://www.feedingtubeawareness.org/
http://www.bellybuttonsandbelts.com/ I plan to order Case some of these soon.:)
Really cool "tuby jammies".


Comments

Post a Comment

Popular posts from this blog

About Case.

-
Image
Let me tell you all about the boy that is the inspiration behind A Very Special Family. Before Case was born we knew he was sick. During the routine "gender scan" ultrasound they found a "spot on his kidney and a spot on his heart." They referred us to a high risk OB about an hour away from our home. In order to not drive myself crazy, I decided to tell myself it was nothing in the days counting up to the appointment. It was something. It was a lot of things. I'll never forget that day, the day I heard the laundry list of birth defects, health problems and complications my sweet baby had. I remember my world starting to blur. That day, in the OB office right after I was told our baby was sick I don’t remember much but I remember hearing the word “Grace”. It was clear and unmistakable. At the time, I thought the baby was a girl and that was to be her middle name. Once we got home from that appointment, I looked up the word Grace. Blessing and
Read more

About Case.

-
Image
Case is our fourth child. He has 3 sisters. At 22 weeks pregnant I had a routine ultrasound. The tech seemed calm, ordinary. She said we were having another girl. We named her Parker. "She" was healthy. Typical. Fine. A week or two after that "normal" ultrasound we got a call. There was a spot on our "baby girl's" heart and one on "her" kidney. Not a big deal. At about 25 weeks of Pregnancy, We had a second level sonogram about an hour away from our home.  I was told our baby would be different. Very different. It's limbs were way behind in growth. It had heart problems, kidney problems, and was small. Very small. The doctor strongly suspected Down syndrome or Trisomy. He did an amnio. I cried. He told me this was not my fault. I was doing everything I could. The baby was just made different. Two and a half weeks later, I got a call. I was there, in that hotel. On a mini "getaway" with the family. The doctor called an
Read more

"This is not the end of the road."

-
Image
"This is not the end of the road. You don't want to see the end of the road...I have, and it's not pretty"-Dr. Ruldolf's response to me saying, "I just really feel like we are at the end of the road..." We're doing it (by we I mean Case). He's getting the GJ, this Friday. It's not the end of the road but the beginning of one. A new adventure. The GJ will help him grow. The food running straight into his intestines and bypassing his stomache means that it will absorb correctly. And if all goes well, the vomiting will cease, and Case will steadily and painlessly grow. This GJ will be put in at radiology while Case is awake. They will take the Mic-key button he has now out and put a new something (not sure what it is called) in. It will have 3 ports. One that feeds food to the stomache, one that feeds food to the intestines, and one to fill the balloon. If it gets ripped out, we can not put it back in. We will drive to Pittsburgh, and they will
Read more