Friday, November 15, 2013

More Waiting.....

Hi friends!  I'm stopping by to give you all a Charlie update.  I think the last update I gave was about a probable mucus plug and a lingering cough, so we had started an extreme dose of laxatives and sick plan.  Since then Charlie has spent much of his time pooing his cute little brains out (poor guy) but no more blockage so that is definitely good news!  His lingering cough, however, has continued to get worse and worse.  He was put on amoxicillin and after 5 days of his cough worsening he was put on steroids (prednisolone), and after 3 more days of his cough still sounding junky and nasty we were brought in for a chest X ray and sick visit at the CF clinic. 

Charlie makes hospital visits and X rays look goooooood :)

Now it's hard for me to write about this and not feel like we are being "alarmist" about this cough because Charlie is acting FINE.  He's got plenty of energy, is happy, and has been running around like a nut ball this whole time (some of this energy is care of the steroids haha).  And I know that plenty of 3 year olds with CF have a constant "junky" cough as part of their CF and it's not anything to get worked up about.  But I guess the difference that Robb and I are worried about is that Charlie pretty much never has a cough.  I don't know if this is because he hasn't been sick very often because he never went to daycare and/or we're just lucky that he's on the "healthier" end of the CF spectrum thus far.  But now he's had a cough for over a month now, not anything super serious until the last 2 weeks when it's really gotten junky.  Because this is not normal for HIM and the antibiotics and steriods seem to make no difference we are apprehensive and worried.

So anyways, I took the day off yesterday and we headed to the CF Clinic.  We were unsure if Charlie would be admitted or not so I packed up 4 bags with all of his belongings (literally FOUR bags, just for him) including his vest, nebulizer, nebulizer parts, medications, medications on an ice pack, blankie, doggies, books, PJs, sippy cups, etc etc.  Since we've never had to be admitted I had no idea what we needed in terms of medicines and equipment so I erred on the side of caution and brought it all.  For those who have had to do CF admissions: do you bring your own vest? Nebulizer? Medications?

 Playing I-Spy with the pictures in the waiting room

We got there and went to get a chest X ray which was saved by a nurse who has a 3 year old son who was great at getting Charlie to "pose for a picture" despite his desire to hide in a corner.  Then we had a 40 minute wait to be seen at the CF Clinic.  And then 20 minutes of waiting in the room.  I was so nervous because I wanted to just know if he needed to be admitted or not, I've had anxiety over this for the past 2 weeks and just wanted to get it over with.  Finally the doctors came in and we discussed everything.  They asked Charlie to jump around which elicited a big junky cough so they were able to hear what we were talking about.  The X ray didn't show pneumonia- phew!  The final reccomendation was that they wanted to try more outpatient therapies before admission but if we didn't want to wait we could admit him that day. 

I wasn't counting on that.

I assumed they would say either "yes admit him" or "no he's fine".  Not leave the decision to us!  This threw me for a loop, we didn't WANT to admit him but seeing as the oral antibiotic wasn't working it did seem to be a good idea.  I already had all of his things packed.  But if we could avoid a stay in the RSV and Flu filled hospital that would be best.  So Robb and I were torn but mostly leaning on the side of trying everything we could before having to admit him.  Then the decision was made for us because the hospital was filled and there were no beds anyways!  Phew- so admission avoided for now!

It's not an exam table, it's a race track.  Obviously.

The new plan is to try a new antibiotic (Bactrim), start saline spray 3X per day, start his TOBI early, stop the old antibiotic, add a few more doses of steroids, continue his sick plan (4X daily treatments) and give it a few days.  We have an appointment scheduled for Tuesday, and if he is not better than that will be an immediate admission for 14 days.  Hopefully this will all work!  It will be very difficult for everyone involved to do a 14 day hospital stay, especially Charlie.  He is boisterous, energetic, and hates to be still-- so an IV would definitely be a huge challenge.  In addition, Robb and I both work full time and Robb has lots of sidejobs that he does as well, so it will be very difficult to figure that part out.  The hospital is also an hour away from our house, 2 hours from my job, and an hour from Robb's job, so the commuting would definitely be hard. 

But we'll try and stay positive and hope that this new regimen works!  I hate all the waiting, I just want to KNOW already instead of floating in the limbo we've been in for the last 2 weeks.  I certainly appreciate the doctors doing everything in their power to prevent him from having to be admitted, but at the same time all this "try this and wait, now try this and wait, etc" stuff is stressing me the hell out.  To any CF parents out there- can you give any tips for hospital admissions?

Okay, I'll be back with some scrapbook layouts tomorrow for those of you that prefer scrapbooking to CF talk :)  I'll let ya know what happens about admission next week too! 


1 comment:

  1. I hope Charlie is feeling better! Keeping you in my prayers.


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