Surgery #1

“She needs a biopsy of her GI tract.” Moments later, “while she’s under, we’ll do a pH probe to check her reflux and then we also need to put in a NG (nasogastric) tube to make sure she can tolerate feedings and to get her electrolytes normal for the G tube surgery, which will occur 2 weeks later.” He handed me a 7-page blood draw order and told me to wait for his nurse to come in to schedule. He was very kind and listened intently. He was very calm. I had brought all of the kids, thinking this was just a quick appointment in which he would throw up his hands and say, “Good luck with the G tube, you don’t need me.” But I was wrong. His sweet nurse must have seen my deer-in-head-lights look on my face when she came in. She did, however, tell me that the NG tube may need to stay in for those 2 weeks before the G tube surgery. She tried to soothe me by saying the nurses would be there to teach me how to use it and also how to put it back in, just in case it was pulled out. (Instantly, the image of Josslyn trying to cut off her cast 3 years ago with safety scissors came to mind. It was suddenly not as funny in this moment as it had been then.)

I am grateful to have an amazing medical team at Nemours in Orlando. I am grateful that after all these years of “Failure to thrive,” these doctors have answers.

But, let’s face it: I’m terrified. I don’t want to see her in pain. I don’t want to see her fighting with the nurses and with us over this tube going through her nose and down into her stomach. And I don’t want her to not be able to handle the feedings. Because, then it will be a whole another scenario and nobody has explained that yet.

I’m slowly counting down the days when this surgery will happen. No longer will I get to check “NO” on the questionnaires asking if she’s had surgery in the past.

I’m also not sure she’ll be ready to go back for her G tube surgery just 2 weeks later. Will she ever want to go back to Nemours? She went from loving it there to dreading it. She’s not excited about the G tube anymore. Too many appointments with too many trips to the x-ray department. We haven’t gone to have her blood drawn because I know she’s going to freak out and I’ll have to hold her down again.

 It’s not easy to do that even when you know it’s for a good reason. Just like, when my grandfather passed away. I’m rejoicing that he’s in heaven with his family and being the life of the party as he was here, but I miss him. He hasn’t really been “him” for years due to dementia, but that doesn’t diminish the fact that I miss him. I’m so thankful I went to see him before he passed. The moment I sat down on his bed, our eyes locked and he smiled at me. Then he took my hands and pulled me to his cheek, where I knew he wanted me to kiss him, which I did. And he smiled for a moment after that, before his eyes stared past me and he didn’t smile at me again for the rest of weekend. Yes, he’s home now. And he’ll smile at me again someday. But for now, I vacillate between sorrow and joy.

I heard today that my friend’s son is going through some of the same testing. I was immediately happy to have someone to talk to, and also, very sad that she is going this with her son too.

It’s hard to have such differing feelings at the same time. I’m stubborn. I pick a side and I stick with it. Having to be 2 things at once is beyond my scope. It makes me want to bury my head in the sand and not come up until I have figured things out. Except, I can’t figure things out. I have to trust these specialists. Most importantly, I have to trust God.

He wants me to do something with all of this…He’s trying to tell me something. (Kinda like in Nemo…I’m Marlin about to escape the East Australian current to head to Sydney; not understanding a thing the turtle is trying to explain.)

But for now, I frankly don’t want to hear that Josslyn will be ok. I don’t want to hear that I shouldn’t worry. I just want people to pray for Josslyn and send her lots of fun things to do in the hospital and at home. 

And I want to help those who will follow in our path. I want to make it easier for my friend and her son.

I just want the best for my daughter. Even if it’s a worst-case scenario for me.

Swallow study at Nemours