Tuesday, April 14, 2009

Rough Day

This photo sums it up. Maryam had a rough day. Her button was hurting her so badly today that she cried for hours. I'm not exaggerating at all, I literally mean HOURS. No position was comfortable, she was in pain and she was exhausted from being up for a few hours in the middle of the night because of the pain from her button. And to pile it on, she couldn't get comfortable enough to nap today. We saw a surgeon back in January to assess whether or not it was time to move her button so that it wouldn't hit her rib bone anymore. We decided against it at the time because we wanted to try everything that the surgeon suggested first. Well, we've been doing everything he suggested and up until now, it worked, but she's in more pain than ever now. The pain only started a few days ago, but today we could tell that it was excruciating.
Yesterday she came up to me and said button hurt. She lifted her shirt and it was bleeding. We took out the button to see where the blood was coming from and there were two cuts. One of the cuts was actually in the hole, the other was on the outside of her stomach right below the button. It looked like she had pinched the skin on her button and it cut the skin. Today we went back to bandaging with the hopes that putting the bandage between the button and her skin again will help stop the pinching. I also put some Mederma on the cut and the bandage will help keep the Mederma from getting on her clothes. (I guess having Mederma on her clothes would be better than the blood though.)
Earlier today we tried deflating the balloon by an ml to see if maybe that would help with the pain. It did help with the pain, but it also loosened the button enough to cause her stomach to leak. If you look closely at the above picture you can see that her shirt is wet, that's from the button leaking. If you see discoloration, that's from the bleeding.
We'd HATE for Maryam to have surgery on her stomach to build a new track and put in a new hole and button when she's so close to maybe not even needing it anymore. We have to decide between her level of discomfort and pain and the potential of going to the feeding clinic in less than 3 weeks. These are the kinds of decision parents never dream they'll have to make.

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1 comment:

  1. Poor little gal! That picture really does sum it up. I hope your patchwork helps her rest today (and lets mommy and daddy rest too) and makes her much more comfortable. ((HUGS)) from Ohio
    Ellen & Ally