Sunday, December 15, 2013

Four More Weeks

This seems like an appropriate time to write a post about dealing with an ostomy bag because I have averaged about one bag change a day for the past week.  (We usually get about three days out of one bag.) Johnny had an X-ray with contrast medium done on his colon yesterday to make sure there were no kinks in it, and it looks great! So barring any bout of the flu, we are on track to have the take down procedure done January 9th.  Just four more weeks of dealing with an ostomy bag and it can't come soon enough.  There have never been two parents more eager to change a poopie diaper than Alex and I!

While changing Johnny's bag is not fun, and worrying about it leaking at inopportune times is a constant stress, his bag is a perfect example of how a person (me) can get used to just about anything. When we were learning how to change Johnny's bag in the NICU it took both Alex and me with the help of a nurse to get it done.  I ask the nurse if she ever did this by herself, and she nonchalantly replied, "all the time!" I couldn't imagine ever being able to it on my own.  But I was forced to pretty quickly. Johnny's bag leaked on Alex's first day back at work-- my first day home alone with the baby.  It took two attempts and 45 minutes to change that bag. Johnny screamed the whole time, and I was crying by the end. Now, if all goes well, I can do it in about 10 minutes, no tears!

For those who are curious: here is what a typical bag change is like!

Here is Johnny with the leaking bag.  The book is to keep him distracted  so he doesn't pull the bag completely off and get poop all over himself.


This is an ostomy bag.  While I get the new bag ready Alex takes the old bag off, using a damp cloth, and gets Johnny all cleaned up. 


Using a pattern saved from the previous bag I trace an opening the size of the stoma.


Then I cut out the whole.


This is a sticky putty called cohesive, I make a ring of it to go around the opening I just cut.


Like this!


Now the bag is all ready to be applied.  But today we had time to give Johnny a bath, which is nice to do because then the skin at the sight of the stoma can get really clean and makes a better seal for the new bag. So here's a picture of Johnny checking out the water faucet.


Clean baby!


This stuff is called "No Sting". It is very very sticky and makes a seal on the skin so the bag sticks better, and also protects the skin when we remove the bag. 


After applying No Sting we can put the bag on. This is the new bag over the stoma.  Yup, that is Johnny's intestine you see there!


Then we use a very high tech piece of equipment called a Tootsie Warmer to help melt the seal.  Just kidding, it's just a bag of beans that we used to heat up and put in the bottom of our bed when it's cold.



There was a small window, when Johnny was about 3 months old, when he was old enough that he didn't cry during bag changes, but young enough that he wasn't rolling around.  Now the hardest part is keeping him still while putting on the bag and waiting for the seal to set. But other than that it's not too bad!


When Johnny first got his colostomy and the doctors told us he would have it for 6 to 9 months it felt like it would be a life time. But now we're almost done! Just as we are getting some closure (literally!) to one big phase of our life a new chapter of uncertainty is opening up.  We had an appointment with an orthopedic surgeon this past week to do some more x-rays of Johnny's spine. After we found out that the original concern that his tail bone might be tethered to some other part of his body was not an issue I began to breath easy about his back.  He has some curvature in the thoracic region of his spine, but lots of people live with scoliosis and it's no big deal.  But on Wednesday the doctor was concerned that Johnny's head tilts to the left, all the time. He pulled up images from the MRI he had done in September to look at the top two vertebrae.  He has an atlanto-axial instability.  Which means the bones didn't form right and the junction in the top vertebrae is too loose and his head is not being supported as it should be. Babies bones take a long time to fully form, so we will be repeating some imaging when he is a year old, and that will give us a better idea of how much, if any, intervention he will need. Worst case, he would need another surgery to put his head on straight. ie: locking his neck into place. I'm told it's not a risky surgery, but he would have limited range of motion in his neck for the rest of his life. If it's not too bad, he may just need a neck brace. There is a chance that his bones will form well enough that he won't need anything. But for now we just don't know.

This appointment was very frustrating. When we are at home living our lives it's very easy to forget we have a baby with health problems.  We're reminded when his bag leaks. But soon we won't even have to deal with that. He wears hearing aids, but I'm so used to them now, it's like having a kid with glasses. I was really beginning to feel like we were putting medical issues behind us and that things would become normal, only to be thrown back into uncertainty and worry.  

This weekend is the third Sunday of Advent- Gaudete Sunday. Rejoice! And in the readings there was a theme of healing. 

Be strong, fear not!
Here is your God,
he comes with vindication;
with divine recompense
he comes to save you.
Then will the eyes of the blind be opened,
the ears of the deaf be cleared;
then will the lame leap like a stag,
then the tongue of the mute will sing.
~Isaiah 35:4-6

I don't believe in flipping open the Bible at random to get an answer from God. But I do believe He has a way of telling us what we need to hear when we need to hear it, and I needed to hear those words. Our God heals; bodies, but also hearts. He heals disease, but also fear. And he is with us, and Johnny. If you are reading, will you commit to praying for Johnny spine between now and his first birthday? I know that the Lord's will will be done. I know he can heal Johnny's spine. I want my will to be aligned with His. 

//Thanks!//

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