Another Antibiotic, Another Illness

Thursday, after all of our running, Saxy and Mommy made a trip the the clinic.  His nose went from running a little and his head was congested, to blowing out large amounts of green mucus and wheezing.  Any other day, I would just call the doctor to get a script for the antibiotics, but the wheezing had me more concerned.  After talking to 3 different people on the phone, we had an appointment scheduled with one of Dr Ulrich's PA's for 10:45 am.  Much shorter wait time than going through Same Day clinic or Urgent Care, and we get a CHOICE over who we see, which is great. 

This PA Michael seemed pretty good like the last PA we had (Andrew).  He listened to all of Sax's symptoms, what treatments we've been doing, and what my thoughts and suggestions were on his illness.  Sax was really good about the exam - he even climbed up on the table by himself!  Michael looked in his ears, mouth, and nose and listened to his lungs.  He said Sax's lungs sounded ok and he thought any sounds he may have heard were made by the postnasal drainage.

We requested that Saxon not be put on Omnifec this time.  The Omnicef DOES work, but it also causes him not to eat and causes a lot of bm issues... and we've have success in the past with Augmentin, so that's what we decided to go with - 2x per day for 10 days, along with 3-4 vest treatments per day with Albuterol for the first 2-3 and Pulmozyme with the last.  At first it looked like this all was going to work... not so much now.  Many other CF moms suggest we give him probiotics to combat the bm issues - well that's all fine and dandy - IF he would EAT!  It doesn't matter what foods we try giving him if he's not going to eat them!!Last night was a really bad night for Sax... He kept Mommy up until 2am... If he decides to nap today, I think I will have to nap too...

Now, in fundraising, we are having a StridesForSax team meeting tomorrow night to plan for our upcoming fundraiser on March 5.  We are serving food for the annual Aragon Dart Tournament.  The agenda is to discuss and set pricing for the meal, make posters, and discuss any further fundraisers we may want to do.  It's also time to get registered for the Great Strides walk.  Just go to our site to register to join our team today!!  Or, if you would rather just make a donation, you can do that here too!!  We're hoping for a good turnout!!

Here we go again....

Another call to Vicki today at Mayo.  Sax's head is congested, but he really hadn't been having any discharge. Wasn't too sure what to do, since usually it's running pretty good.  I told her I thought I'd up him to 3 rounds of CPT with 2 albuterol nebulizers and one Pulmozyme.  She said that sounds good, with the addition of a saline nasal rinse.  He took the first one pretty good - a lot better than he did his CPT and nebby treatments!!  He even took his Nasonex without fighting!  (I'm not sure why, but he's been fighting us pretty good on those the last few days.  It might be because he hasn't been napping.  When he hasn't napped, he has a tendency to fall asleep during treatments.  And I think he knows this too....) 

Anyway.  The first dose of nasal spray seemed to loosen things up a little.  His nose started running a little.  It was all clear discharge at first... I kept wiping his nose.  Then I made him mad cuz I wouldn't give him a sucker.  So he decided to blow all the snot he could out of his nose.  And it was nasty green.  Yup, you guessed it!!  Infection, which means more antibiotics... back to omnicef.  Hopefully he won't get the gas and icky stomach he had with the last round.  If I'm lucky, I can get ahold of Dr Ulrich and maybe get him on something different that won't bother his digestive system so much.  The Zantac he's on doesn't seem to help with the situation at all.  He has enough trouble with gaining weight as it is, we don't need to do anything to hinder it anymore.

Sax's lungs seem to be sounding alright.  I think the cold/congestion is all in his head.  He coughs a little and sounds a little gunky, but it sounds like a stuffed up nose and postnasal drainage.  I'm really hoping that's all it is.  I'm worried too, though.  I'm worried he may have polyps again.  When I was trying to get him to blow his nose and was cleaning it out, it looked like the insides of his nose are swollen.  He's already had 2 surgeries to remove them.  We're hoping to be able to go 3-5 years before he'll need them again.  The Nasonex is supposed to help suppress them.  But until very recently, we had a lot of trouble giving it to him.  We go back to the ENT in Feb when we have our other appointments.... hopefully they don't find anything....  Keep our little man in your prayers...

Starting out the new year!!!

So I know I've slacked a little bit, so we're going to play a little catch up....

Saxon finished his omniceph and hasn't been having as many tummy issues or poopy issues!! Yay!!!  We're happy to say he is starting to eat more again too!!!  Not as much as he had been eating before, but still doing pretty good.  It's not an every day thing that he DOES eat, but he does eat more often than not.

On New Year's Eve, Raine had a couple friends over to hang out and one to stay the night.  The girls had so much fun, and so did Sax.  It was so sweet that they included him in on their games!!  The girls stayed up until about 2 am, and Sax had crashed about 12:30.  That's still pretty late for all of them though!!

He was especially enthralled with the noise makers and all the balloons.  I figured to have a REAL party, ya gotta have balloons!!  We drew pictures on them.  Sax still has a few of them around the house more than 2 weeks later!!

Today Daddy, Raine, and Saxon went sledding.  It was Sax's first time really going down a hill.  We've had him out playing in the show, and Daddy has pulled him in his sled before, but this is the first time down the hill.  Mommy couldn't go cuz I was helping Grandma and Grammy with a few things (Grammy broke her shoulder before Christmas, but she's doing good!!)  Daddy said Sax did really good, even when he fell out of the sled.  He went down all by himself a couple times too!!!  Our little man is fearless!!

Earlier today, though, he had a little incident.  We were making lunch and the kids were playing upstairs.  We heard Sax start crying, so Daddy went to get him.  Apparently he hadn't been in Raine's room playing with her - he had been in OUR room playing...... and fell and cut his eyelid!  Daddy didn't see anything at first.  A little later when Mommy was snuggling with him, I noticed he had a little blood on his eyelid.  Unfortunately we have to be super careful putting anything on it cuz the antibiotic cream says to keep away from eyes....  I did a warm compress that did seem to help....

Hopefully the next few days will be uneventful... Our next Mayo appointment isn't until the end of February, hopefully we won't have any more doctor appointments for him before then!!

Results

So I talked to Marilyn (our nurse at ALMC) today.  The culture results are in.  The results are negative - nothing was found in his bm's.  So that closes that one out.  I also talked to Vicki yesterday.  (We had to order more enzymes but we had to have her fax in the prescription because of his increased dosage.)  I told her about the appointment on Thursday and how I was waiting on the test results and that the x-rays only showed that his abdomen is distended because of gas, which we already knew, but there is no blockage.  Based on what Vicki told me, with the stool cultures coming back negative, we can pretty much chalk it up to the Omnicef (antibiotics) that he's on right now, because they can cause stomach flu-like symptoms.  He's on those until Thursday since all antibiotics for our little CFer have to be a minimum of 14 days.  By Monday, Vicki thinks, Saxon should be back to normal with eating.  Since he's still pooping, our big concern is keeping the weight on him.  There's no way he can be having daily poops with barely eating anything and keep up any weight gain.  We really don't want to go with a feeding tube, so we need to figure out WHAT is going on!!!!

Christmas Eve....

The kids are tucked away in bed, waiting for Santa to come as they sleep, excited to see all the toys and goodies they've been brought....  They deserve it... They're good kids..... 

Saxon is not back to 100%.... We had an appointment yesterday at the ALMC clinic.  Vicki told us that if his appetite wasn't back and if he was still having bad gas and irregular bowel movements, we would need to take him in.  I tried to get in to see Dr Ulrich, but he wasn't available, so we were referred to see the PA. 

The abdominal x-ray showed his abdomen was distended from gas.  Nothing else seemed to be abnormal, and his temperature was normal.  Andy, the PA, requested a stool sample, which had to be refrigerated and be brought back.  We were SURE to bring it back right away this morning!!  I didn't want that stinky poop in my fridge!!!!  I feel bad for whoever has to deal with that in the lab -- I wouldn't wanna be the one who opens that container!!  I have built up a tolerance for the CF smell, but even I was gagging when taking that sample!!!  So that's some potent poo!! lol!!  In the meantime, Vicki wants Sax on Miralax through the new year....

Tonight Sax did eat some ice cream.  I guess that's better than nothing.  And a few cookies.    Since he's not eating much, I'd rather him eat that than nothing....  I'm hoping we get some answers when the test results come back...... and that he doesn't lose any weight in the meantime...  But until then, we're going to try to have a good Christmas. 

(He was excited to open his Christmas Eve gift though!! A train from Raine, after they sprinkled reindeer food out in the yard)



Spreading reindeer food for Rudolph



(Hoping for) A Merry Christmas

Well, Saxy went back on antibiotics on Thursday.  He was getting pretty congested and had a lot of green nasal discharge.  He was breathing pretty loud at night and was running a low grade fever too.  Not fun!!!  He's on Omniceph, which seems to work pretty good.  We have to get it refilled about 10 days after getting it filled because once it's mixed, it's only good for 10 days.  He seemed to be feeling better after only 2 days, so that's a positive sign!!

But over the weekend, he started acting different....  We went shopping on Sunday, and he was getting crabby every time he passed gas.  And it's large amounts of gas, like an adult would pass.  It seems to be hurting him.  He hasn't been having as many bm's since we upped his enzymes, which he's not supposed to, but they have been VERY large.  He tells us he 'pooped' every time he gasses, and he cries.  He cries in pain for hours, and is inconsolable.  I called Vicki before doing anything since we can't mix meds with everything he's on already.  His Zantac should be taking care of the gas.... Vicki thinks that he's not completely emptying his bowels, so back on a regular dose of Miralax to help move things along.  I'm supposed to call Vicki back in the morning to let her know how things are going.  If he's still gassy and upset a lot, we may have to take him in to have an abdominal x-ray to make sure there's no blockage.  We will be able to do that here with Dr Ulrich, our regular doctor. 

Here's to hoping we don't have spend Christmas at or in the hospitals!!!

Living in MinneSNOWta!!

First blizzard of the year - and a full-fledged one at that!!!  It started about 7pm Friday night with rain and freezin rain and switched over Saturday morning.  We ended up with around 8 inches of snow between about 7am Saturday morning and lasted until the wee hours of Sunday morning.  Areas about an hour north of us and areas an hour east of us ended up with 15+ inches.  Daddy had a fun time trying to dig us out today - we couldn't even open the back door because the snow was part way up the door!!  And, as luck would have it, our snowblowers are not working!!  He got us dug out with the help of the neighbor's snowblower and the other neighbor's nephew.

The kids and I went grocery shopping on Friday after Raine got out of school - and it was CRAZY already at 3pm!!  We needed milk, eggs, bread, potatoes, and some snacks- ya know, the normal stuff - but the milk and bread were about sold out, not to mention the bottled water!!! (what happened to the days of just melting snow during a blizzard?  or filling empty milk jugs with water??)  Sax was really excited since we actually got one of the kid carts (for the first time).  I put a bag of taters in it right away so he wouldn't tip it over going around corners!!  Just had to be careful, though, cuz he had his own ideas of what he wanted to get....

Saturday the kids spent the day playing together pretty well, and Saxy clung to Daddy a lot.  Daddy woke up early and wasn't feeling too well. Mommy was sick all day, so spent a lot of the day sleeping, or trying too.  Stomach bug.... not fun!! It's a shame it was too cold to go out and play in it today!!  Our high temp was 0 degrees with a -15 windchill - not ideal for the kiddos especially since Sax won't keep his hat or mittens on!!  Maybe later this week we can get out and play - it's supposed to get up to 18 by Wednesday!!  If I can only find a way to keep him bundled up.... Hmmmm.....