Thursday, November 7, 2013

A Near Miss to the ER and Flashing My Pharmacist

Hi everyone! Let me just say that the last 24 hours have been ridiculous.  It all started with my dear son, Charlie.....

Charlie has CF, as you know, and one of the more serious side effects of CF can sometimes be intestinal blockages (all the mucus gums up his intestines and blocks the way).  In fact 20% of newborns with CF have a condition called meconium ileus (which is the meconium getting stuck and blocking the intestines) and require bowel surgery, and meconium ileus is a very likely indicator that a baby has CF.  Luckily Charlie did not have this as a newborn but we are pretty vigilant about keeping track of his BM's and such to make sure he doesn't get backed up.  BTW this post is pretty poop heavy, so consider yourself warned and leave now if you don't like it haha.

Over the past month or so Charlie hasn't been going consistently like he used to, so we were told to start using a laxative to help keep things moving and if he goes more than a day without pooping to call it in.  We started this about 3 weeks ago and haven't really seen a huge difference. This past Monday he went around 830am but then by Wednesday afternoon he still hadn't gone so we gave the CF center a call.  They called back and told us to bring him to the emergency room for an X ray because there was likely an intestinal blockage so Robb left work early and rushed home.  On the way home our nanny called and told us that he had a very small #2 so Robb called back the CF center to tell them and they said we wouldn't have to go the emergency room after all.  PHEW, good timing Charlie!  They think he still has a mucus plug blocking up his system but it's not fully blocking it, so instead of the ER Charlie was put on a heavy dose of laxatives to flush out the plug.  OH also, he's been coughing and snotty for a month now so we told them about that and now he's on sick plan and a new antibiotic as well.  SOOOOO for the next week or two Charlie's schedule looks like this

1 cap of Miralax (this is an adult dosage)
2mL of Milk of Magnesia
4 Creon Pills + Breakfast

3-5 puffs of albuterol
1 vial of pulmozyme via nebulizer
1 vial of pulmicort via nebulizer
20 minutes of Vest therapy

4 Creon Pills + Lunch

3-5 puffs of albuterol
1 vial of pulmicort via nebulizer
20 minutes of Vest therapy  


1 cap of Miralax
2mL of Milk of Magnesia

3-5 puffs of albuterol
1 vial of pulmicort via nebulizer
20 minutes of Vest therapy  

3-5 puffs of albuterol
1 vial of pulmicort via nebulizer
20 minutes of Vest therapy  

4 Creon Pills + Dinner
6mL Periactin
4mL Pepcid
2mL Aqua ADEK
2.5mL D-Vi-Sol
6mL new antibiotic (I don't even remember what it is)
4mL Zithromycin MWF

UGH.  Poor kiddo, all that time in between treatments, meals, and meds will probably be spent on the potty
 :(  Sounds like a good time for a 3 year old eh?  Plus we had to call him out of preschool this AM and they were going to meet a fireman!  Oh well, at least it's an off-TOBI month so his treatments are 30 minutes shorter than they are when we're on a TOBI cycle.

So moving on, since Robb didn't have to go to the ER he stopped and got Milk of Magnesia on the way home and started him on that.  On my way home I stopped at our pharmacy and picked up his new antibiotic prescription so we could give that to him right away too.  I figured since I was there it was the perfect time to get my flu shot.  I'm a wimp about needles (which is odd considering I've had 12 piercings...) so I was kind of distracted as I pulled down the side of my sweater to expose my shoulder for the shot.  I was chatting with the pharmacist for a few minutes when I looked down and realized I had pulled down the tank top I was wearing under my sweater as well and my entire fucking bra was showing!  Like completely exposed boobies.  OMG I was mortified.  Then I got my shot like a wimp, ran the fuck out of there, got home (to which Charlie said "NO MOMMY! GO AWAY" which has become his favorite greeting lately), gave Charlie his meds, read him books, put him to bed, and promptly started worrying about what would happen if he didn't go to the bathroom the next day (thankfully the laxatives have started working this AM).

And that's where we are at.  I hate how quickly CF changes everything.  One day everything is fine and the next day all the shit hits the fan.  Oh well! At least he's not in the hospital and at least we can manage everything from home, so I'm grateful for that.

Speaking of hating needles, I'm on my way to donate blood today.  I'll try not to flash the phlebotomist but no promises....

1 comment:

  1. Oh my word! You need a day off my friend! :)


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