Well, that's what I get for trying to put a happy spin on a not so happy prospect. It changes.
I learned today that Radiology wouldn't be able to place Payton's tube for 3 weeks. AND, to make it worse, they met with the surgeons and after reviewing Payton's file have determined that, given that Payton has unique anatomy, they aren't even 100% sure that placing the tube radiologically would be successful.
So, we have been given the choice. Place the tube Friday via the surgeons or wait 3 weeks to place it radiologically and run the risk that it doesn't work.
In the meantime surgery has requested OR time on Friday to do the proceedure.
There are pros and cons to both but the clincher is with the actual surgery, Payton could be home as early as a week from Friday. With relying on radiology she's in the NICU for at least another month.
So while we haven't signed the consents yet, I think we'll be relying on the surgeons to place her new feeding tubes.
The surgery involves cutting into her abdominal wall and into her intestine. They will then place 2 tubes (one for drainage one for feeding) and then tie the tubes to her stomach and then her stomach is tied to her abdominal wall (to keep everything in place and from moving around).
The thought is that with everything tied, the likely hood of the tube coming 'loose' is low and it keeps things secure.
There are good and bad things about this route.
The Good:
They will place 2 tubes - one drainage and one feeding tube. Payton will have NO tubes on her face (or tickling the back of her throat).
Its happening sooner so Payton should be home much sooner (we're still on her schedule but it looks good if she tolerates things well) and she'll have things out of her mouth/nose sooner (we may even do oral feeds very soon though likely her drainage tube will simply drain it, she'll still be getting the taste and sensation of feeding).
The Bad:
- Payton will go back on the vent. Apparently she needs to be back on the vent for the surgery. Its part of the process when the babies undergo anesthesia and it also relaxes her abdominal muscles that is essential for the surgery.
- Payton will be 'cut' open. They will use the same scar as her diaphragm surgery so she won't have any more scars (not that its a huge thing for us) but that means that she may bleed a bit more (apparently new scar tissue has lots of blood vessels that can bleed more) so she will also be on standby for another transfusion.
- There are risks (like any surgery) so we'll be approaching this like all the invasive proceedures Payton's had, with caution, hope and faith in the medical team.
4 comments:
I haven't caught up all the way on Payton since Grace passed, but it seems like she is having some issues with food moving through her stomach to her intestines? Is that right? Have they very throughly checked for pyloric stenosis? It is supposedly very common with CDH. Grace was not able to move food through her stomach, and they checked but missed it, it turned out that she DID have it, but they couldnt fix it cuz she had too many abdominal issues. It's a quick fix though if they are already going to go in and place the feeding tubes. Im so glad she is doing so well, I read through the beginning of your blog and I am just so glad for guys.
Hello, Renee
My prayers are with you All - for a successful surgery and a speedy, healthy recovery for Payton!!
Love yours, Auntie Bev
Very wise - sounds like a good plan and all of my fingers, toes, arms, legs and eyes are crossed for a nice clean go of it.
As always, keeping you in my thoughts. I continually hope that today will be the day that things move smoothly forward for Payton!
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