Hola Friends,

Once again, my apologies for the lag time.
Abby is doing okay today, but that hasn’t always been the case. All of a sudden, she shut off regarding her feeding. She went from taking 3 bottles in one day, 2 the next, 1 the day after that to nothing. Not only that, she would freak out and scream about 10 seconds after we gave her the bottle. Was it the reflux? Was it the G Tube? We didn’t know. At her therapy appointment for her eating, Abby didn’t do well at all and Karen, the therapist was not happy to see how many steps backward Abby had taken. Abby was clearly agitated, but Kelly and I were confident that once we figured out what it was that she would do better on her feeding. There are basically 3 topics we needed to cover.
1 – Her reflux. It’s pretty bad and she is already on medication, which obviously isn’t working very well, so there was nothing we could do over the weekend. Today Kelly is going to call our Pediatrician to see if there is anything stronger we can give her.
2 – Her constipation. When Abby can’t go number 2, she gets super uncomfortable. And when was the last time you felt like eating a steak dinner when you were this way? Exactly my point. Abby has no desire to chow down when her tummy hurts like this.
3 – Her G Tube. At the sight of where the tube goes into her tummy, Abby has had some redness and irritation so she was put on an antibiotic in case it was infected. But then this weekend, we noticed some skin was raised up and puss was coming out. Oh no. We were freaking out. Was the infection getting worse? We can’t have an infection because of the shunt! If the infection spreads to the shunt, it could get into her brain and that is big time bad news. Kelly called the hospital and spoke with the on call surgeon who said to come in based on what Kelly was saying. There was a possibility that we’d have to take the G Tube out, put Abby on an IV for a stronger antibiotic and re admit her to the hospital! NO!!!! The doctor said to take Abby to the emergency room first thing Sunday Morning.

Bright and early Sunday, Kelly found ourselves going back to CHOC. We met with the surgeon Kelly spoke with the previous day and he took a look at the skin and the puss by the G Tube. “ Not to worry,” he said! It’s not infected! This is normal irritation. The puss isn’t really puss. It’s just a combination of the dampness of the skin that is forming and the bit of milk that is leaking out from her tummy. The mixture is giving the green look. (The leaking of the milk is normal for right now since the G Tube is still new) Thank Goodness. Man we were relieved. So what now? Well, he did say that the raised piece of skin can be very irritating and that he would burn it away with some black liquid junk. “Will it hurt?” we asked. “Yes. A lot.” And sure enough Abby screamed like mad and cried her big tears. All the while Kelly and I had to hold her down. The surgeon also noticed that there were some stitches still there so he took those out. He said that those could very well be a part of the cause of her irritation. One of them was a in a knot that looked like the knot you’d use on fishing string to put a fish hook on. It was huge. And if that was rubbing inside Abby’s skin? Of course that would hurt! So with that tender piece of raised skin gone and the stitches out, we were anxious to see how Abby would act.

By the time we got home, she did seem much more content and continues to do better today. Abby is taking more of a bottle now and she isn’t freaking out nearly as much. We haven’t gotten back to a full bottle yet, but I’m hoping we will soon, especially if we get some stronger reflux medicine today. Another good thing that came from our hospital visit is that she cried so much it must have shaken her tummy around because she isn’t having any trouble going poop, so that issue is now under control.

I really think that if we get this reflux under control Abby will get back on the right track.

We appreciate all the love and support that you all are STILL giving us. Thank you all for checking in. Please keep it up.

Pray that Abby’s reflux and her myriad of other issues will get better so she can do well with the bottle.