Operation

Ahh this one sounds like it should be fun. You know, the old game called "Operation" where the guy has all these different body parts that you have to insert back in his body and you have the tweezers attached to a wire? If you touch the metal side, the guy's nose lights up and makes a really loud beeping or I guess I should say honking sound telling you that you screwed up? Don't you wish that real life operations worked that way? That the patient's nose lit up every time you almost screwed something up?

In my last blog I wrote about how I received a phone call from Lady L talking about Baby Girl's Dr asking questions about a G-Tube. Well, I sucked it up and made an appt today. I was nervous because I didn't know how it was gonna go and I certainly had a right to be! Little did I know that when I did this he would want to do surgery right away. Meaning, my appt with the surgeon is in the morning and we are doing surgery, presumably next week, to get a G tube placed.

It was in the back of my mind, but I guess that I never really thought she would need it. I thought she would get better by now. That her reflux would get better, that she would start liking food more, that she would be more than in the 10th percentile in weight and height.But it hasn't. She has stayed the same. The only thing that has changed is the fact that we have been able to move from a 1 hr feeding schedule to a 2.5 hr feeding schedule, which, yes, is a heck of a lot better. But we are at a standstill. At the beginning of the NG tube placement, we said by August, if nothing had changed, we would consider something different, and the Dr came up with this solution. She has been on the NG tube now for 3 mo. It is so dangerous and is not a permanent solution. Not that the G tube is a great solution either, but it is a bit more safe for at home care.

All that being said our best outcome is us having this for less than 2 years. Our worst outcome is 10 years or more. No one will give us an estimate. I am hoping for the 2 year range. I pray that Baby Girl will enjoy foods and begin to eat more and more! But that was our prayer with the NG tube as well.

Now about the surgery:

With an ordinary child, this could probably be done as an outpatient procedure. However, an LCHAD child cannot go without fasting, therefore Evangeline will need to be admitted the day before so that she can be hooked up to IV fluids so that her sugars remain stable. Ordinarily they would ask that she not eat from say midnight till she gets out of recovery. For Evie, this is impossible. They will also need to be in close contact with Dr Marble, he specialist, during the surgery, should anything happen, like her sugars dropping for no reason, as commonly does with LCHAD patients. She will also probably have to stay the night that night to ensure that she tolerates the Gtube and the formula pretty well so that we don't end up right back in the hospital. And if she doesn't tolerate it, then we stay another night until she does. This is what is scary to me. All these "what ifs".

It is so hard for me to pray for "God's Will" because God's Will is not "Brittany's Will". My will would be for her to be perfect. Digest fats, no tubes, take all of her bottles, and be in the 90th percentile. But instead, she is in the 10th percentile, can't digest Long chain fats, needs a tube to help her eat, and is not "normal". I realize that the NG tube is dangerous for her and is certainly not helping my marriage or myself but this just seems so unreal. So permanent. The G tube will be better for all, if the surgery goes well.



I don't really know what more I can say. It is out of my hands.It really does feel like I am living someone Else's life. It is a very odd feeling.