So very relieved to have had this meeting. We had some misinformation and a lot of missing information so I needed to have it all straightened out.
We have hospital notes up until March 16. His surgery was either the 17th or 18th. The discharge papers say to follow up with his neurologist. (The surgery is on his stomach.) So not so helpful.
During the 6 weeks we've had him, he's been in the ER 3 times and they ask questions I cannot answer. The latest episode was where the tube was blocked and the ER docs thought they'd have to replace it and they asked me what type of tube he had. Uhhhhhhh...
So today. He had a Gastronomy tube put into place. a 14 French Pessar to be specific. He also had a Nissen Fundoloplication via incision.
The misinformation was that this would be via laproscopically. That was NEVER the plan per the surgeon. He says they never do that on a child this small. That was huge news because we thought that the surgery plan had changed, like maybe something had gone wrong and they had to alter the surgery plan. Truth is ... this was the plan all along.
The tube: We were told via the ER doc that this was a foley catheter and not a g tube. Truth is ... the tubing LOOKS like a foley but it is not. It is a very specific type of gtube. So nothing changed there either.
While there- they handled the granulomas. What's that? You know how when you have a foreign body in you like a splinter? You skin grows new skin to try to push it out. It's a really cool thing our body does. But in the case of the tube ... it NEEDS to be there. This new skin bleeds easily. So they have to cauterize it.
So they did. My Mama heart was breaking as he was crying. It looked painful. I would have hit the doc for him ... except I knew it was for his own good. Yikes!
But the coolest thing happened too ... he was kicking. Not a lot. Not like someone else would notice. But *I* noticed. My baby was moving his legs a LOT (for him). So as I was sad he was in pain but I was also amazed at his ability to move.
Finally ... the follow up plan. We know that they usually change these tubes to 'buttons' ... some are done at 2 weeks post op, some 3 months post op ... and everything in between. We didn't know their plan.
They recommend 2-3 months post op to change to a button. There are two types and will leave it up to me to decide which. So I have some research to do.
They also gave me all the surgery reports and said that the team in Tampa can do all the follow up. Yippee!! He will be seen by a team at the local Children's hospital. They have a GI doc and a pediatric surgeon. They will decide when and which type.
So it was a very productive meeting. I got EVERYTHING I needed from them. Mostly I got a sense of relief. I now know what happened to him and what the next step is. And if he needs to go to the ER again in the meantime, I know what to tell them! I feel a sense of peace ... finally ... something that's been illusive since March 26.
Our next meeting is with his team on Monday.
Stay tuned. I have a feeling you're not going to want to miss this journey.