Thursday, June 5, 2014

Tracheostomy & Gastrostomy Scheduled for Friday

We apologize for the late notice, but Roscoe has two surgeries scheduled for Friday. Doctors had presented the ideas of a tracheostomy and gastrostomy to us back in early May (near the end of the "Purgatory" blog post), but they wanted to see how Roscoe's breathing fared for the next few weeks. He hasn't fared well enough, so the surgeries are scheduled for this Friday (his 8-month birthday). Roscoe's breathing hasn't improved, so they have decided that a tracheostomy will aid in his recovery and development. They also noted that since Roscoe still requires a feeding tube to get his full food intake, they will opt for a gastrostomy as well. If you don't know what either of those things are, just keep reading and I'll explain.

First, Roscoe will get a tracheostomy. This is a process where they cut a hole into Roscoe's trachea (neck just below his Adam's apple) and insert a long-term linkage where they can connect a respirator. The linkage will be strapped to his neck to prevent him from dislodging it. It will look something like this:
The advantage to having this done will be that the breathing mask, tubes, and stickers will all be removed from Roscoe's face. The benefits aren't just cosmetic either, since they will also have better control over the air delivery to Roscoe's lungs. Right now, air can leak out of the mask around his nose, or leak out of his mouth, or even be pushed into his stomach instead of his lungs. With the tracheostomy tube installed, the air will get delivered much more reliably to Roscoe's lungs. Initially as he recovers from surgery he will require more breathing support, but within the first week we hope to see his breathing support come down from the current levels (since it will be more efficiently delivered to his lungs). Roscoe will probably have a lifelong scar on his neck from this, but our hope is that it helps him recover faster and come home sooner, safely.

Second, Roscoe will get a gastrostomy. This is a process where they insert a long-term tube directly through his stomach wall. This tube will give them direct access to supplement his oral feedings, if he isn't taking in all of the calories he needs to grow. It will look something like this from the outside:
and from the inside it will look like this:
Doctors ran an experiment last week for 2-3 days where they let Roscoe feed only by mouth (without a feeding tube) and he didn't eat a sufficient amount and lost several ounces of weight. Mainly he is working so hard on his breathing that he's burning more calories than a baby his size should be. That means that to maintain his weight, he needs to take in more calories, and his brain isn't telling his mouth to eat as much as he needs. This tube will stay in until Roscoe starts eating a sufficient amount to maintain a proper weight.

Roscoe has undergone 3 surgical procedures so far (cardiac catheterization, hernia repair, pyloric stenosis) so these will be surgeries #4 and #5. The surgeon joked with us that this would be the 3rd time he'd opened up Roscoe's belly button for a surgery, so he said that he was going in so frequently that "maybe I should just put a zipper in there".

As always, we ask that you pray for our little man. The next few days will be very hard on Roscoe, because early in the day on Friday they will stop his feedings so that his stomach is empty during the surgeries. As he recovers from the surgeries on Friday and Saturday he will be on heavy pain medication (possibly even morphine) and will be kept bound up so that he doesn't agitate the surgical areas. The tracheostomy tube will be stitched to Roscoe's neck for the first 4-5 days until the surgeon returns to inspect the surgery results and perform the first tube replacement (which will be done periodically for cleanliness). Roscoe is also on a higher level of breathing support than he was for his prior surgeries, so that is in the back of our minds as an extra risk (although the doctors don't seem very concerned about it).

We know that these surgeries will turn out better for Roscoe long-term, but in the short term they will be very hard to stomach ... I mean the notion will be a hard pill to swallow ... okay, enough with the surgery puns. You get it: just pray. :)


  1. Oh my. So much for a little guy. Will be praying hard for him! And Mommy and Daddy.

  2. Praying, praying, praying for all of you and for the surgery team!!!