Thursday, January 2, 2014

Up and Back, Up and Back

Brrrrrrrrr! We have found out the hard way that Minnesota is COLD in January! And December for that matter. Alex has progressively gotten worse since our previous appointment in early November. Let's start there...

At our appointment with Dr. Loftus (GI doctor) in November, Alex was diagnosed with cellulitis and put on some "heavy duty" antibiotics, along with the ones he takes regularly. Despite the increased medication, Alex's infection continued to progress and become very painful. He was in frequent contact with Dr. Loftus and his nurse to keep them updated on his status. They continued to be hopeful that the medication would clear the infection. Late in December, (on Lydia's birthday, actually), a fistula broke through the skin, allowing some of the infection to escape. Whew...relief. Scary relief, but it did provide some pressure relief and intermittent decreases in pain. At that point, we decided it was not a good idea to travel to OK, as planned, for Christmas this year. We scheduled appointments for two days following Christmas including a CT to assess the infection and a consult with Dr. Loftus. We set out for MN on Thursday after celebrating the holiday at home.

The CT confirmed that Alex has 3-4 fluid collections/abscesses and Dr. Loftus agreed that a drain needed to be placed to more effectively drain the infection. A surgical consultation was also "not a bad idea," as Dr. Loftus put it. However, with the holidays, Dr. Devine (the surgeon who is familiar with Alex) was not in the office. As late as it was on the Friday between Christmas and the New Year, our only option for getting a drain placed was admitting to the hospital to get the on-call interventional radiologist to do the job. Read: low man on the totem pole who doesn't typically do these procedures during the week, but is forced to work over the holidays. Dr. Loftus voted for going home with plans to return for a consult with Devine and drain placement at that time with more exprienced IR's. we are. Alex had a drain placed this morning under CT. Then we met with Dr. Devine and his (rather large) team to discuss our options. This is where nerves of steel come in handy. If anyone has some of those, please send them my way. It felt like a million little men were dancing in my stomach. Then again, maybe that was Claire trying to wriggle her way to the floor to see what was down there to eat. Ewwwww. Will Alex be put in the hospital? Will he have to have major surgery again and we will become temporary residents of this frigid land? Will the kids stay in KC with Nana and Papa, stay here, go to school like usual? And so on...Dr. Devine however, had already reviewed the CT(s) and talked with Dr. Loftus. "I would not recommend major surgery or resection in the case at all," he said as he sat down and his team swarmed into the room. We have two options, he continued. To see if the drain allows the antibiotics to do their job (at an increased dose) and allow the new Crohn's medication Alex started last week to work or to do a debridement of the area where they open the infected area and clean out the infection. This would leave the area open to heal from the inside out. The fistula will likely never heal completely, but this would clear the infection. Then we heard a lot of "It's up to you"'s and "I could go either way"'s before we finally pressed him to tell us that he was leaning a bit more towards surgery. "However, it is more invasive, and I am certainly not opposed to seeing if the drain and medication can also do their job." So, it was up to us. After meeting again with Dr. Loftus (who clearly leans more toward the drain/medication option), we decided to meet somewhere in the middle. We will return to Antarctica, errr, Rochester, in about a week and a half after Alex's second dose of Remicaid, giving a bit of time for the drain to do its job and maximize the potent antibiotic regimin that he's already on. If at that point, Alex is not feeling significantly better and an additional CT does not show improvement, we will schedule the surgery during that visit. Dr. Devine will then open the abscess to clear the infection surgically. It would be an overnight stay following the surgery for observation, and then we would return home.

Well, it feels good to have a plan. It feels even better to know that major surgery with more bowel lost is not involved in said plan. Alex's appetite improved with his first dose of Remicade and he has resumed eating like a horse when he feels like it, and sleeping when he doesn't. :) He's finishing off his Cinnabon as I type. Which is not Paleo, by the way, but is preeeeetty calorie-dense. It's a delicate balance!

Thank you all for your continued prayers and support. So many of you have offered to help by watching the girls, bringing meal or offering prayers. We are so very blessed to have such loving and supportive friends and family and even an addendum to this novel would not adequately cover how much we appreciate each of you. We are so blessed and God is so very good.

1 comment:

Caitlin Burk said...

Wow! My thoughts are with you. Gena, I can see from your actions and smile everyday I work with you that you are a wonderful person.