Developing Negatives

Well, sometimes a misdiagnosis can be a blessing in disguise, I suppose. This has been a super tough blog entry to man up and write.

She really did have a leak in her esophagus. (See that funky vulture beak shape off to the side of her throat in the x-ray? That's it.)

But, we got to take her home anyway, and she got three days of Clindamycin (a heavy duty antibiotic--intended for the aspiration pneumonia she apparently did not have), a lot of Tylenol, and a lot of sleep. But our poor, poor baby was just not herself. So lethargic and unresponsive, and the reflux was unbelievable. Every few minutes it was like her whole gut would just cramp down and twist her like a dishrag-- squeezing wet stuff out both ends. I was on the phone waiting twenty minutes for my turn to make an appointment with the pediatrician (for the required ER followup) first thing on Monday morning, when her surgeon Dr Downey called me. I was so surprised because I thought he was still on vacation, but he said he'd been reviewing her file all morning (this was about 8:20 am) and wanted us to come in for tests and a chat as soon as possible. He said there was no doubt from the fluoroscopy images; she definitely had a leak, and depending on how it was progressing she might need to be admitted for a couple of weeks to receive picc line antibiotics.

Packed my two year old to visit the babysitter, and Audrey and I packed off to visit the lab. Her little veins were so scarred from the ER visit (it had taken them five tries and an hour to get a little blood over the weekend, plus the surgery from the previous Friday had used some for IV attempts), that I was dreading the blood work more than anything. But we were blessed to have a fantastic staff at the lab that morning, with compassionate and experienced techs to get us through. Audrey gave them exactly the blood they needed for the test, and not a drop more, on only the second try. In fact, the blood stopped flowing just shy of what they needed, and I quietly pleaded with her for just a little more, and she looked at me so intently with her eyes as if to say, ok mommy, but only because you asked so nicely--and then exactly the last few drops they needed seemed to eke out then with her permission, counted drop by drop like precious coins.

Two hours later the surgeon and I wrapped up our visit, and we went on our way with lighter hearts. The images he'd shown me were amazing--there was no possible way the doctors could have misread that fluoroscopy up at Primary. Why didn't they tell us she had a leak? Maybe the report got lost in the shuffle? Maybe they just didn't want us to freak out because Dr Downey was going to be back so soon and it would be better for us if he handled it -- that seems unlikely, but it was the happy end result. Because yes, we would have totally freaked, and so would the hospital. I am sure they wouldn't have let her come home. But, the lab results were encouraging-- Audrey's infection was responding well to the Clindamycin, which also meant the leak had stopped. After consulting the hospital pharmacist, he switched her from Clindamycin to Metronidazole so that he could add a drop of Erythromycin to her daily meds to aid motility (help the stomach empty faster) to help with reflux, (because apparently there would have been an interaction with the other two, and) because he feels it's the reflux making her stricture clamp down again so quickly after dilation. We left with a "watch and see" plan that was easy to live with.

The next morning Audrey had her monthly visit from her home therapists.  They listened to our crazy tale and saw how sick she still was, and one thing they said was to watch for diarrhea with mucous or blood in it, because Clindamycin was famous for causing a nasty bacterial infection called C-diff. Audrey was already having terrible diarrhea that was burning her poor tushy, and after a couple more days I finally called the surgeon on call to ask if we had been on the antibiotic for long enough that she could stop-- because she was actually crying with pain now when I would plunge the med into the G-tube--SO SAD. Luckily, it had been long enough and we were ok to stop. The diarrhea stopped within a couple of days, then came back with a vengeance a week later, but my true worries came when I started seeing mucous in the stool. C-diff is pretty nasty stuff from what I read, and can be really dangerous. I took her in to the pediatrician, all stressed out, only to have her perk up and be happy and cutesy for the doctor visit! He recommended some probiotics and to my great relief, in just two days, they worked! The reflux finally stopped too, and suddenly, it was like the calm after the storm-- leaving me with that bewildered feeling like, well let's get back to normal life already, why are we so behind on everything? We snuck in the quick chance during those short healthy days to take the family on a mini vacation to Zion National Park. During which I came down with the NASTIEST virus, courtesy of my second grader (who managed to sleep it off in about a day and a half, which may explain why I got it so horribly bad--because moms just can't do that, although my husband was a huge wonderful help). Fever, chills, aches, and oh the horrible coughing and sneezing! I am genuinely afraid for Audrey to be coming down with this, but yet, she is smiling and happy. Her nose runs, she has a little cough, and she has started spitting up her own saliva again, but all she's really managed to need is a priesthood blessing and some Tylenol so far. I thought we'd never make it to Friday, and here it is already-- a month since her last dilation, and I think we'll make it just fine to Monday when Dr Downey wants to do her next one.

So, exactly why was that so hard to write? Well... here's the thing. When her (major) surgery was done in August, as you may recall the repair was extremely tight, and they were working with unnaturally fragile tissues already in her "blind pouches." Partly because of that tight strain, her stomach is now bent out of shape, increasing her reflux and putting further strain on the unnatural esophagus. All of these things mean that she is delicate in there and could tear when they do the stretching-- it just hadn't happened before. Now that it has, it could happen again. And worse, he said if it tears badly, they would have to abandon the esophagus, go back in and do a gastric pullup. In other words, another major surgery akin to August 8, this time with a intentional hiatal hernia and pulling the stomach up into her throat. So, we are treading on thin ice. He was debating whether to even do another dilation, because she is so fragile in there--or whether to consider trying an alternate method of keeping her throat from tightening down with that scar tissue. He researched the innovative idea of using a stent designed for keeping airways open, but ultimately abandoned the idea because studies found that they became easily dislodged and then became stuck in wrong positions. Now we are back to anticipating the next dilation, with more nerves than before, and hoping that the erythromycin will help her milk empty out of her stomach faster. (I hope you checked out the image at the top-- it is so amazing, you can totally see how her stomach is small and round instead of the normal oblong kidney-ish shape of a regular person. You can also see the leak at the top left-- it looks like a side pouch, well, it IS a side pouch, because that's what the leak does to the esophagus, creates a protective membrane as soon as possible to contain the leak, in whatever shape it has to. Fortunately in her case, somehow her throat closed that pouch back in and gave her a more straight line again. It doesn't always happen, I've heard.) Anyway, Dr D went through a sort of Plan A, Plan B, Plan C, and so on list, of lines of defense we will try, ideas to implement, as we try to avoid the drastic alternatives should her esophagus fail. Meanwhile, she is still 100% G tube fed, but boy does this baby want food to try putting in her mouth (check out her first taste of bacon--she sucked on that thing like it was never to be allowed out of her mouth aGAIN). Maybe this dilation will be the one to get her there. But meanwhile I have been processing the news that she might need another major surgery, and trying to regroup and find my courage and hope again. He hasn't given up. She certainly hasn't given up. So, I guess it's time for me to man the heck up too. The best bacon is yet to come, right?