So, um , yeah.... we took Wyatt's G-button out last Wednesday.... then we put it back in on Thursday... Let me tell you about all that...
So last Wednesday we took Wyatt's G-button out at his GI appointment. I wasn't expecting it. I didn't think she'd be happy with his little weight gain but she trust us to know when we're ready and a couple months ago I said we were ready. They usually want you to go 6 months without using the button and get through the flu season. My argument there was that if he's sleeping and needs meds and I can take the easy route of pushing some meds through his button, I'm totally going to and know that if the button isn't there, then we'll wake him and do it. Also, there is ALWAYS a flu season around the corner, it's going to come every single year and he's not a baby anymore. So, anyway, she loves Wyatt, has known him (and us) since he was in the NICU and trust that when I say it's time, it's time. So, we took it out.
He has a lot of granulation tissue (extra skin from the movement of the button is the best way to describe it) or it could actually be some of his stomach sticking out- they aren't really sure. I guess it kind of looks the same. ;-) I had a feeling we'd have issues with that but who listens to mom, the non medical professional. lol. When we got home Wednesday, I fed Wyatt lunch and then lifted his shirt to look at the bandage covering the site. It was leaking horribly. I changed the dressing and it continued to leak. Repeat that about 6 times,me changing the way the dressing looked each time. I finally made a GIANT dressing with 2 maxi pads that held and wasn't leaking. PTL!!!! That was messy and stressful.
While doing all that over and over again, I called into the general surgery office. We already had an appointment scheduled at the 1 week mark to have the site looked at per GI request but I wanted to be seen ASAP. I knew from friends' stories of taking their buttons out, this wasn't an issue like was for us.
We went in Thursday afternoon and the doc questioned me a little bit but then when he saw Wyatt's site, he agreed that it did in fact need to be surgically closed. When we put a G-button back in , he noted that it had not even begun to close and wouldn't have. Due to how long he had a g-button (about a week or 2 shy of 3 full years - waiting for my time hop to give me the actual date ;-) ) and the tissue, it's a good looking hole that would remain a hole until it's surgically closed. I asked if he could do it right then, he laughed a little until he realized I was serious. lol. Then I asked about Friday and he politely said he'd go check with his surgery scheduler to see when either him or our actual surgeon, Dr. Schindel (He did the placement and Wyatt's CDH repair) could do it.
With all that said, Wyatt is scheduled with Dr. Schindel at Children's Health Legacy at 8:00am tomorrow (Wednesday) to have his g-button hold closed. He will have to undergo anesthesia. Nothing new for him and PTL he always handles it great but there are always risk. He also had a fairly good fever this weekend and technically that can delay surgery but he woke up yesterday and this morning fever free. If he doesn't get one again, I will let it go. If it goes up at all, I will call and we'll probably reschedule. He had no other symptoms and acts fine.
So there you have it, no more G-button as of tomorrow. He's still eating only blended foods and low volume. We just boost EVERYTHING! I actually spoke with his speech therapist today about how we've kind of come so a stand still a bit and she's been trying to figure some things out with him too. I mentioned the Day Patient feeding program... basically like the inpatient one we did over a year ago except it's a few hours a day and you go home instead of spending the night. She agreed we might be to that point. It'd be a long 5 weeks but he may need that intensive push to get him to taking actual bites of solid foods. I told her that if she thinks that we are close, I'd like to get the process started so that we can get it all finished before the end of the year. We've hit our out of pocket max for insurance and I'd sure hate to pay for that. lol. :-) We'll see how it all goes.
Last week was just emotional and exhausting. I started some solids with Gabe and he did great and it brought my heart a great deal of joy and I'm so grateful God is redeeming those things that I missed with Wyatt. But we are still going through some of that with him too and so my heart ached watching Wyatt gag on some of his blended lunch and throwing up. I pray for the day they can sit down to eat and Wyatt can eat what Gabe is and they are laughing and goofing off at meal time. ;-)
I had a hard time finding JOY in all of this. This should have been (at least in my mind) this big, bright, joyous moment. It wasn't. I was overwhelmed, worried about the granulation tissue and leaking. I am so grateful we are finally here but I worry too. I just have to pray and remember, God is total control as He always is. He hasn't let go or forgotten about us one single time. Wyatt is important to Him and He very purposeful in every single little detail. I'm grateful for that. It's hard to accept at times but it's still good.
My aunt sent me a couple of verses recently that have resonated closely in my heart relating to all of this...