When?
That being said, the number one goal is to not make a complicated situation worse. Since Alex just had surgery in November (to place the mesh), he will still have multiple adhesions/scar tissue. Performing the surgery now would be too big of a risk for loss of healthy small bowel. So...the surgery will be scheduled for about 4 months out.
Where?
The severity of the Crohn's paired with the complications of the mesh means that the surgery needs to be conducted by a team of the best of the best. That means we will come back up to Cleveland for surgery.
So what in the meantime?
Alex will be sent home on IV nutrition (TPN). He had a central line (long-term IV port) placed in his chest today that he will use for the administration at home. We saw the infectious disease doctor today (actually a team of three of them) and they do not feel like the mesh is infected at this time. That means he will most likely be sent home with oral antibiotics rather than IV ones. He will also be encouraged to eat and take in as much additional nutrition as possible. The GI doc has not yet decided exactly how his medication regimen will change, but it will likely be different as well.
When do we blow this Popsicle joint?
Turns out...they need a few days to cycle him through the TPN and monitor him. TPN here works a little differently than in KC in that they hang two different bags rather than one of milky stuff, separating out things like electrolytes from lipids. This has been proven to be easier on the liver and cause less complications. Looks like we won't be making our flight on Sat, but hope to be home early next week. We will hopefully finalize the actual day with the case manager and social worker tomorrow.
More good news...
The surgeon here is very pleased in the "compliance" and health of Alex's rectum. That means that he will plan on leaving the rectum in place with the plan of re-attaching it and the small intestine at a later date. That is not an option at this moment, but is something that he apparently feels is coming down the pike in the future. This is a key difference and worth every bit of coming to a center like this...to not exhaust options for future advances like this. He said several times that he feels Alex will be a good candidate for this and he expects his quality of life to benefit greatly from a future procedure such as this.
After all of this, Alex is still keeping his wonderful sense of humor. He refused to just smile for the picture...so here is his best "sick" face he could muster. The patch on his chest is where the ports go...
1 comment:
I had my entire colon removed as well as the rectum so reconnection to the ileum was not an option. Instead I have a stoma. And because I had complications after the initial surgery, two additional incisions were needed. My surgeon included a mesh to prevent a possible hernia. I was also on a "wound-vac" system for several months until the incision sites completely closed. I am adapting to my ileostomy and each day becomes easier. Keep all your options open as long as can and stay healthy. Uncle Mic
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