“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.
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| Swallow study at Nemours |
