We have been catheterizing Emma now for 3 1/2 days. I can honestly say that it is not nearly as bad as I anticipated it would be. On my first 2 attempts, I was unable to do it, and had to have the nurse do it (and it was quite challenging for them as well). It was pretty frustrating, as Emma looked rather uncomfortable, and I couldn’t see where I should be inserting it. But on my third and fourth attempts, I was on my own – and LUCKILY I was able to do it pretty easily. Since then, it really hasn’t been a big deal. And most importantly, Emma seems much more comfortable during it. She has even slept through the procedure 2 times!
The strange thing is that Emma has only had 1 wet diaper since Tuesday. Though the urologist told me that she wouldn’t become dependent on the catheter, we are finding that is the only time she is emptying her bladder (and boy, does she store a lot in there!!). While the process isn’t that big of a deal when we’re at home – it will make it more of a challenge to be out of the house for more than a few hours. Depending upon where we are, it can be tricky just finding a comfortable, clean place to change her diaper – let alone a discreet place to cath her.
Rachaeli’s dad was so thoughtful to call me last week and tell me that Robinol, a medication Emma takes to dry up her secretions, can have the side effect of urinary retention, since it is a systemic drug. So after taking to her pulmonologist, we decided to take her off the Robinol and use Adavent (an inhaled medication through her nebulizer). Hopefully, it will help somewhat.
We met with the GI doctor this week. Though we have seen 2 other doctors in her practice, we haven’t seen Emma’s original doctor (who I love) in about 1 1/2 years, as she was out of the office for quite while. She really understands Emma and is so knowledgeable. It was good to touch base with her. She didn’t make any big changes to Emma’s medications or feedings. She couldn’t get over how big Emma has gotten – especially since she first saw her when she was an 18 lb. peanut!
And speaking of that little peanut, I brought out some old home videos, so that Jake could see himself as a 16 month old toddler (like Zack). We started watching other tapes, and got to see sweet Emma when she was 8 to 10 months old, just after her diagnosis. It was so nice to see her moving, eating, looking at things, and especially laughing. However, even then, with her big brown eyes opened wide, she had such a serious look on her face. And her movements were very slow and reserved. It seems SO long ago that Emma was at that stage – how quickly it was all taken away. And while I had a very hard time videotaping and taking pictures of Emma for the first several months after her diagnosis, I am so thankful that I did. Those are the memories we will forever cherish.
Have a great weekend!
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