This is Saxon, our energetic little man who was diagnosed with Cystic Fibrosis when he was a week old. We gathered together many friends and family members and created Strides for Sax. Our mission is to raise money and create awareness for the Cystic Fibrosis Foundation to find a cure for cf. This is all about Sax and our team's efforts for the cause. As of the creation of this blog, Saxon is 21 months old, has been hospitalized several times for pneumonia, and had undergone 3 surgeries since his first birthday.

Friday, September 23, 2011

Prilosec Pills and Omnicef

I have some updating to do, as usual.  Up until today, we haven't had too much in the way of health issues for the little man. Or, not major ones anyway.

Sax just moved into his sister's room into new bunk beds.  He likes going to bed more now because he has a big boy bed now!  The top is a twin bed (Raine's bed) and the bottom is a full-size futon (Saxon's bed).  For now we're leaving it set up in couch format since that's all the bigger his crib mattress really was anyway.  It seems to be ok with him, plus he kinda sinks into the crease, so he doesn't move around too much and hasn't fallen out.  As a precaution, Daddy has been putting up the baby gate in the hallway so that if Sax tries to go from their room to ours, he can't accidentally fall down the stairs.  (This isn't too much of a problem unless pregnant Mama needs to use the bathroom in the middle of the night!! lol!!)

We tried Sax on Prilosec liquid suspension for a while.  This was a total failure.  He hated, and I mean HATED, the taste of that.  No matter how we tried to disguise it or hide it or mix it into anything else, he still wouldn't take it.  Well, Vicki came through for us again.  She called and asked if she had heard me right when I said before that Sax was swallowing his enzymes whole.  This was GREAT for the little man!!!  There is a 10mg Prilosec capsule that is very similar in size to Saxon's Creon 12, which is the right dosage for him.  Well, since he'll swallow his enzymes, we just told him it's like a white enzyme, and he swallows it with no problem!  If this works like it's supposed to, it SHOULD cut down on his tummy problems even more, help him absorb more of his food, and boost his weight.  We're keeping our fingers crossed!  He's already started eating more!

We are also monitoring Sax's weight since at his last appt he was down again.  I have set up bi-weekly weigh-ins with the clinic here in town.  Last week, Sax weighed in at 14.2 kg.  Today, when I had to take him in to Urgent Care, he weighed in at 14.4 kg.  Pretty good for only a week.

Yes, we were in Urgent Care today.  Not fun.  Tuesday Raine had been sent home from school with a sore throat and fever.  She's started a cold around Saturday or Sunday with a little coughing and a runny nose.  Took her into Urgent Care when the school said that strep throat was going around.  Sure enough, strep and an ear infection.  10 days of antibiotics for her.  I kept her home Wednesday, per doctor's orders, while the antibiotics took effect.  Wednesday night she was up half the night blowing her nose and coughing again like she did Tuesday night, so I kept her home on Thursday too.

The problem with having a sick child at home is that the other will usually end up sick.  I'm surprised it took as long as it did. 

I tried to keep the kids separate, Raine kept her hand sanitizer and Kleenexes with her at all times.  (Poor girl has been blowing her nose so much that she's been having nose bleeds.)  I told her she needed to rest so that she'd feel better.  Couldn't send her to her room to lay down because then the little man wanted to be up there.  He wouldn't nap and would just keep her up, so I just told her to lay on the couch.  Her number 1 complaint?  "It's no fun having to rest and watch your brother play!!"  Of course, this meant about every 5 minutes I was telling her to get back on the couch, or telling him to get off the couch and off his sister, or telling her to put his toys down before he spread too many germs.

Today we sent her back to school - she wasn't resting much at home anyway.

This morning, at 5 am, we got a wakeup from Sax, wanting to crawl into bed with us.  And sounding congested.  And gunky.  And just plain clogged up.  Have you ever listened to someone talk or breathe, and you just can't help but clear your throat or cough because you can just hear the junk in their throat??  That's what he sounded like.  And as much as he coughed, it didn't sound like it was loosening up.  Him and Mama went to sit in the recliner so that he'd be a little more elevated and could maybe breathe a little better.

Daddy did a thumps and nebby treatment on the little man about 6 am.  Sax and I went to Urgent Care about 8 after dropping Raine off at school.  The nurse thought it was cute that Sax knows the routine for getting weighed in - walked over to the scale and took off his shoes, then stepped up like a big boy!!  We went to the exam room and waited for the doc from there.  I made sure to let them know that yes, he's already gotten his flu shot (family activity Tuesday night - lol!!  Except for Raine, who can't get hers until she's feeling better.) 

The doc we saw today was a new one for us.  Her name is Lynn Kelley and she is semi-retired.  I was very surprised when I told her about Sax's CF, and she said she spent some time studying specifically in CF!  She also knows Dr Henry, the other pulmonologist that we see at Mayo when Dr P is gone.  We thought that was pretty cool, and she completely understood our concerns with Sax's breathing.

Sax did pretty good for his entire exam, including his throat culture. She said his lungs are sounding good and pretty clear. His O2 sats are 98% (which she said was due in part to his morning nebs), and his ears look fine. She did think his throat looked a little red and irritated and his glands are a little swollen. The rapid-strep test came back negative, but she said they will still culture it and I may get a call in a day or two if it changes. I asked if we could do an antibiotic to fight the cold/congestion and to head off the possibility of strep. She said that's exactly what she thought too - and the antibiotic will help prevent the cold from turning into pneumonia too.  Sax is sounding pretty hoarse anyway and he's got a pretty nasty, barky sounding cough.  It's the kind of cough that makes your chest hurt just listening to it.

We're running him on a 10 day dosing of Omnicef.  Hopefully with the changed medications, we won't have the same digestive issues we've had in the past with it.  Honestly I think Omnicef is about the best antibiotic he can be on since it seems to really take care of the problem pretty quickly.  I was surprised that the dosage is so low (only 1/4 tsp) but Sax love the strawberry-vanilla flavor and asked if he could have more after taking it.  We're keeping his treatments at 3 times per day - hopefully that will do it.

I'll post later in the week with how he's doing.