Friday, September 18, 2015

Sinus Surgery #2

E had her second endoscopic sinus surgery on Tuesday.  We got to the hospital at 8:45 am and the procedure was scheduled to start at 10:55, but it ended up being pushed back to 1:15.  So for 4 1/2 hours we tried to keep her entertained and keep her mind off the fact that she hadn't eaten anything all day long!

The procedure went well. It turns out that the maxillary sinus on her right side was completely blocked and unable to drain which was probably causing a lot of pressure and pain.  He said that in a lot of cases with kids who have cystic fibrosis, they don't complain about this kind of thing because they are so used to it and they also have other problems going on at the same time.  But if it was you or me, we would be complaining about it!  So I'm really glad we got her in when we did.

We'll go back for a follow up in a month and I'm hoping we don't see new polyps developing already by then, but more than likely they will be.  They sent some samples off to get cultures done and we will find out in a few days if there was an infection in her sinuses that needs to be treated.

Thanks again to everyone for your prayers and support through all of this!  It means so much to us!

Thursday, September 3, 2015

Planning For Another Surgery

Since E had her sinus surgery in June she seems to have been feeling a lot better.  No snoring, no congestion, not even a runny nose until about 2 weeks ago.  So I was surprised when we went back for a check up with her ENT in July and found out that he already saw new nasal polyp growth.  It had only been a little over a month after she had surgery to clear out her nose and sinuses.  

He suggested getting another head CT done to see how her sinuses looked so we waited until the end of August (almost 3 months post-surgery) and got the CT scan.  I got a call that afternoon from the doctor and he told me that her maxillary and ethmoid sinuses are completely full again and he wants to go back in and clear them out.

When she had her first surgery, he told me there was no way of knowing how soon they would come back.  He's had patients that go 2 years in between surgeries, and others that only go 3 months.  Well, it looks like she's one of the 3 month ones right now.  She will go in for another endoscopic sinus surgery in a couple of weeks to get her sinuses cleared out again.

In the meantime she is getting used to doing sinus rinses,  which our clinic nurse referred to as "airway clearance for the sinuses."  Just like she does her vest everyday to keep her lower airways clear, she needs to do sinus rinses every day to keep her nasal passage and sinuses clear.

We also had her quarterly CF Clinic visit yesterday.  She is growing well and made it over the 30lb mark!  Her lungs sound clear, she's not coughing, no problems there.  But her lab results showed that her vitamin D level is low again so we need to add a vitamin D supplement.  Just one more thing!  No big deal!

I am constantly amazed at how she handles all of this.  As soon as we get used to a certain treatment schedule, things change and we have to adapt.  We add new medicines and schedule extra appointments and she just goes with the flow, because this is her life and that's just what we do!