TIS BUT A SCRATCH

To quote Monty Python and the Holy Grail, “It’s just a flesh wound!” What an insurmountable problem is to some, others see as a mere “flesh wound”.

When we found out that Kadlin had a bacterial infection I told everyone how that was phenomenal news.  Kadlin was diagnosed with C-diff (Super basic terms means crazy diarrhea that needs antibiotics to fix). I was NOT being sarcastic about my excitement. Let me explain.

The lens of life our family looks through tends to be fairly different than the average human. Kadlin has a unique set of complications. We never know when something will change and her body will stop working. It’s just part of life with a complex child. Her chromosomes are missing a huge chunk of info that tells her body how to work. So, she has organs that are working in overdrive 100% of the time to compensate for the spots that aren’t working at all. We have no timeline for when something in her might “break” completely and can’t be fixed or helped. One of the things we DO know is that people with a chromosome deletion in the same area as Kadlin, their lungs generally give out because of the amount of  pneumonias they get over the course of their lives. Many of those pneumonias are brought on by aspirations.

“Aspiration pneumonia is a complication of pulmonary aspiration. Pulmonary aspiration is when you inhale food, stomach acid, or saliva into your lungs. You can also aspirate food that travels back up from your stomach to your esophagus.”- www.healthline.com

We have 2 main reasons we become inpatient. The first is respiratory. Second, only slightly behind in that race, is food complications. We have the respiratory fairly well under control, there is a general arc her viruses follow, but her food is always a gamble.

Because of her complexities, Kadlin has what we cutely call “neurological misfires”. Meaning, sometimes her brain just sends the wrong signals. Specifically, her gut is affected by this. Sometimes she just doesn’t handle her food, meaning she throws up and displays general discomfort. But we give her a day or so off and she pops right back up to normal. Or if it’s an illness that made her throw up, it takes 2-3 days and we are completely back in business. (Deciding if its a misfire or an illness can get exciting too).

This hospitalization we have had a lot of issues getting her food back on. A few hours after we’d start it, and we go incredibly slow (in average people terms, after throwing up you start with broth, then chicken noodle soup, a slice of buttered bread, then maybe a grilled cheese sandwich over the course of a day or two), but then before we could even get past the “broth” stage, she would gag, retch, cry and start having respiratory problems.

After a few days of this my brain jumped to worst case scenario. We were dealing with feeding intolerance and her gut was just no longer working. Can you do long term IV nutrition?  If that was possible would we WANT to? How would that affect her quality of life? If we COULD do it but decided that wasn’t quality, how could I let my baby starve to death? These were all things my brain immediately went to the last time we had to turn off her food because she wasn’t handling it.

(By the way, I asked about the IV nutrition and you CAN do it but only as a short term “band aid” while working on an actual solution. It is not considered a long term solution when your gut stops working permanently)

After those horrifying thoughts, I was able to calm down slightly and go to another scenario where we just needed to find a new formula. That is something that could take a while to find the right one, we have spent weeks in the hospital figuring out that in the past. So, that option is MUCH nicer, but still pretty difficult.

Adding those two options together, I hope you can see a glimmering of why I’m so crazy ecstatic about a bacterial infection.

Kadlin’s brain doing weird things we can’t “fix”. A bacterial infection though? 7-10 days of medication and we are done with the issue! For us, this nasty bacterial infection truly is “only a flesh wound.”