Cody Updates by Mom

Good morning all!  Yesterday after my dilation Dr. Martin came in and high-fived me (really, he did) and let me know that he was able to get me to 15mm.  This is the largest dilation to date and I am looking forward to my eating over the next weeks! Everything has been going well and he is still injecting the steroids at each dilation.  This last 2 weeks between my dilations was the most positive as I didn’t have any symptoms of closure until the day before my dilation.  This is longer than I have gone in the past.  Everything is starting to fall into place and I am really feeling good about thinking that I have finally gotten over the big hill.  There may still be little ones but I am finally on the road that is moving at a pace I am comfortable with.  Dr. Martin said there was no sign of infection so I was able to stop taking the Nystatin.  He did mention to hang on to the bottle as this is common when you are being dilated and it very likely will come back in the future.  Unfortunately, I am getting used to the non-bubble gum flavored med.  More and more of the staff in the GI area are starting to recognize me.  Again, not necessarily good when they are wheeling you into a room and someone says, “Hey, your back!”

A quick update on food, if you are interested.  I have still not branched into sandwiches much as bread can get very balled up and not only potentially get stuck but can also sit in the intestine kind of like a rock.  I can do toast or a grilled cheese as the cooking process changes how the bread breaks down.  I have not been craving sandwiches much however have noticed that they are a staple in restaurants so I am sometimes limited on food selections depending where we go.  Lettuce is definitely not on the menu yet.  I tried a little bit last week and had pretty significant gastric pain associated with the digestion of it.  They recommend that if you have trouble with something that you wait about six months and try again.  They are not too worried about it as there isn’t much as far as calories in a salad but I do very much enjoy the taste so I am hopeful that someday I will be able to get there.  I have not yet tried steak.  It is a bit harder to digest then hamburger.  I do not want to have a problem with it so I have been waiting on this one.

Overall update.  I have lost a few pounds over the last month and am down a total of 46 pounds since surgery.  They haven’t been too worried about it because they are focused on the dilations.  As long as I am not continuing to lose significant weight they should be fine.  I was having some leg cramping and found out that I was not drinking enough water during the day to stay hydrated.  When you cannot drink much when you eat it makes it a little hard to manage this.  They days I stay focused on hydration, I find I do not have any issues with my legs.  Water, water, water!

Thank you to my last two buddies that have accompanied me on my dilations.  I have been adamant with Jim that he doesn’t have to be my one and only driver for these as the procedure is very routine.  It was great to spend the day with my sister, Linda, a couple weeks ago and my sister-in-law, Lea, yesterday.  I appreciate your ability to entertain me as we hang out in the room with me hooked up to machines and IV’s.  You guys are the best!

Thank you again to everyone that has sent prayers my way.  I know that someone is hearing them and helping me through my journey.  I could not do this alone and am so very thankful for your support.

Caring Bridge Comments

Joan Axdal, Prayer Chain, All Saints Lutheran Church, Cottage Grove|Jun 29, 2015 11:44am
So glad to hear that your “path” looks more smooth. We add our prayers for a level path.