6/7 Doctor Visit – One Less Tube

A milestone day for Josie. Tonight she’s one tube lighter as her pancreatic drain finally came out. Up until yesterday she had three tubes still entering her body through her belly: her feeding tube going into her stomach, her T-tube going into her duodenum, and her pancreatic tube entering her duodenum through her tummy and ending inside the main duct of her pancreas (supposedly that is, but there’s not a snowball’s chance in H – E – double hockey sticks that it was still in there).

Back in February, just after the big non-Whipple surgery she had those three tubes plus two other JP drainage tube which were removed within a month. The T-tube and the pancreatic drain both needed to stay intact several months to ensure there was a strong enough fistula (scarred tunnel within which the tubes lie) between the duodenum and the outside so there would be the least chance of infection when it would be pulled out. Her feeding tube must stay in there until she doesn’t need anymore supplemental feedings, which will be about the time she’s 39 or 40 at this rate.

As Josie’s pancreatic tube was pulled, she was a little anxious about it thinking it was going to hurt awot…but the hardest part of the whole thing was taking off the band-aid. The Doc just slowly pulled the drain and it slipped out – all 24cm of it. Josie watched it and said in her funny way…”that tickles”. The bad news is that there is a huge dimple in her tummy where that drain was. It’s likely scar tissue attached to her muscle which will probably not ever change without a cosmetic procedure…but that would be years and years down the road and isn’t even a thought right now. Let’s just say the modeling agencies are not lined up in anticipation of a strong bikini modeling career for Josie with all her scars…although by then the scarred look might be the in thing.

Next will be the T-tube duodenal drain which will come out in a week or some. They didn’t want to do both today just because it’s better to stagger these things.

Dr. Vehe checked out Josie’s skin issues and was pleased with how delightfully pale she looked. He was encouraged by her spunk and activity during our visit (which was borderline obnoxious)…she was all over the place. He’s seeing clear signs of strengthening throughout her whole person…even with the broken leg and all – way better. He was a teensy bit concerned about the splotchy marks on her body but was at the same time somewhat encouraged because he thought the spots hadn’t changed too much in the last week. That said, he’s getting a little impatient that her treatments are still not calming her underlying disease better. It’s still active and smoldering. Dr. Vehe made a change in her IVIG dose and if there are signs of further involvement next week then we’re going to try a different tact again as this one isn’t quite doing the job totally.

Stay tuned.