Just stopping by for a (hopefully) final Charlie update for at least the next few weeks! Sorry if you're getting sick of them!
"Oh you thought I was actually going to wear the mask? Good one, mom!"
So we left off our delightful tale with switching antibiotics to Bactrim. We did this and the cough improved but was not entirely gone by Tuesday when we went to visit the CF Clinic. The doctors decided to pull out "the big guns" since the typical antibiotics weren't working as effectively as we had hoped. The strongest non-IV antibiotic they could offer is something called Levaquin, which is pretty heavy duty. It also contains some heavy duty side effects like joint pain, tendon tearing, fevers, etc etc. However, it tends to work really well (they just never offer it as a first resort for various reasons), so we stopped Bactrim and started Levaquin. If this doesn't work after 2 weeks they'll admit him, but the doctors seemed confident that it would work so I am too :) In addition we have to continue with "sick plan" (4x treatments per day) and continue doing a slow steroid ween.
This is about half of his meds
So this is Charlie's new medication list
- Nebulized Albuterol 4x per day (we ran out of the inhaler being on sick plan for so long!)
- Nebulized Pulmozyme 1x per day
- Nebulized Pulmicort 4x per day
- Nebulized TOBI 2x per day
- 20min Physiotherapy Vest treatments 4x per day
- 3.7mL Levaquin 2x per day
- 4 Creon capsules before meals 3x per day
- Saline spray 3x per day
- 1 cap Miralax 1x per day
- 6mL periactin 1x per day
- 5mL prednisolone 1x per day, every other day
- 4mL azithromycin 1x per day, MWF
- 2.5mL Vitamin D 1x per day
- 2mL AquaADEK 1x per day
- 4mL pepcid 1x per day
- 2 containers of culturelle yogurt per day
- 2 cans of Pediasure 1.5 per day
So that's over 30 doses of medication per day (sometimes less depending on the prednisolone and azithromycin) and about 16 different "medications", if you count the OTC stuff too . Pretty crazy right? I don't bring it up to complain, but more out of sheer amazement that one tiny little 3 year old can withstand that huge amount of medication and still be happy as a clam :) Plus it could be much worse, so we're happy he's not in the hospital for the time being.
One hand holding a nebulizer and a vest shaking his entire body, but he still uses his one free hand to try and make a tower. Kids got balls.
In addition to not spending Thanksgiving in the hospital we have the go ahead to proceed with our original Thanksgiving plans of flying to Orlando to visit Robb's mother and sister. Our doctor said the risk of him getting sick is the same in this circumstance or if he was healthy (altho flying during winter is a risk no matter what) so we could still go. This infection is definitely going to make things a bit harder but I'm sure it will be manageable, maybe we'll just have to do treatments in the airport waiting room...who knows? I'm sure we'll be getting weird looks from other passengers so ideally we won't have to do that. We'll try and have Charlie wear a mask during the flight too, but if he does happen to get sick at the worst we will have that hospital admission already lined up for 2 weeks after starting the Levaquin. But hopefully all those antibiotics in his system will prevent that from happening :) Charlie has a real knack for timing, between him going to the ER right before our trip to Puerto Rico and now this right before our trip to Orlando! It's never easy I tell ya ;)
I'm a little nervous about this antibiotic. It was the first medication we've gotten that had a hold from the pharmacist on it and also came with a full size print out of all the side effects. Here's a taste of that bad boy:
Reassuring huh? I really hope there are no permanent or serious side effects, we are keeping a very close eye on Charlie just in case. If he gets any side effects we'll take him off and switch him back to the Bactrim.
So that's the update, hopefully it will be smooth sailing for the next few weeks!! Thank you so much to everyone that's been asking how Charlie has been doing, it's so thoughtful of you and we are very appreciative that we have such caring friends and family :)