Tune Up 1 Day 3

O.M.G.!!!!!

This little boy really needs an off switch or button!!!  He is bouncing off the walls today!!  That must mean he's feeling better.  But I've had to threaten him with time-outs and taking away toys because he's taking things a little too far.  He started to do the gator death roll while getting his antibiotics.  That can cause his PICC line to come out if he pulls too hard on it, which would mean another surgery to put it back in.  We've tried explaining that, but he's just not hearing us.  

I know it's a little taxing to spend so much time in the room, but he hasn't been confined.  We've been going down to the play room, but we've also explained that he has to do his treatments and medications or he will be here longer.  Sax has also been chewing on his feet and sucking on his toes which, of course, is not a good thing either.  Hopefully when he gets to go outside in a few days he can run off his pent up energy.  I don't think it helps that, as much as I tried, I couldn't get Sax to take a nap.



I slept by Saxon for a little bit last night, but I just couldn't stay comfortable, so I went back to the window seat.  I'm glad I did, because the night nurse said his nose had been bleeding during the night.  She cleaned up his face pretty well but it was still on his pillow and blankets.  After some breakfast, nasal spray, and morning meds and treatments, we figured a bath would be the best way to get him really cleaned up.

Have you ever tried to bathe a 4 year old with a PICC line in?  Especially one as energetic as my son?  Let me tell you, it was a very trying experience.  His day nurse wrapped his PICC area in plastic wrap and then wrapped the rest in a stretchy rubbery tape.  

Showing off his arm wrap and a fishy toy behind his back

She told us not to get it wet because he'd have to have it redone.  I only put a couple of inches of water in the tub, but still had to cut his bath short.  He just couldn't understand he shouldn't get it wet.  He would ask me if he could put his arm in the water, I'd say no, and he'd try doing it anyway.  It was hard enough trying to get his hair washed without getting the bandages wet. On the plus side, they gave us baby shampoo to use, so he smelled like baby soap and baby lotion when we snuggled afterward.  

This is his right arm - these spots are where they had originally tried putting in his PICC line.

Being silly after his bath.

Since he had still been pretty good at that point, I agreed to go to the playroom for a while.  I told him he could play until about noon because we had to go back, order, and eat before it was time for his afternoon thumpies and antibiotics.  I was surprised when he didn't go straight to the computer and opted for a tote of cars and Monster trucks instead.  He found a couple different tracks to drive them on and was quite content while I sat back and watched. 

The weekend worker from Child Life came in to visit since we were the only ones in the playroom.  Sax was interested in playing some board games, but we couldn't find any.  All the cabinets have locks so we hadn't even looked in any of them.  She pointed out the board game cabinet and told us it is never locked and we're welcome to take a game or a few back to the room with us if we'd like.  When I asked about weekend activities, she said there would be one around 2.  Unfortunately that is when he is scheduled for his meds.  If we didn't make it back down there, she was going to bring the activity to us.  Sounded like a good plan to me!!!

Dr Pianosi came to see us while we were still in the playroom too.  We lucked out that it is his weekend to work.  He repeated that Saxon's lungs looked really good on the bronchoscopy and asked if he'd been coughing.  He seemed happy to hear that he has been quite a bit.  As of right now, Sax's lung cultures are still only showing h. influenza, which is normal for him, along with a large amount of white blood cells.  Sax's nasal cultures have started growing staph.  I was just trying to absorb all the information, so I didn't ask him to elaborate on that.  We'll see him again tomorrow so I'll be able to get more information about it.  Dr P did order a change of antibiotics to treat the staph for now.

When we got back to Sax's room, we played a couple games of Candy Land after ordering lunch.  It took over an hour for our lunch trays to come and they forgot some of the order, so that was a bit of an ordeal.  Fortunately it's the only time it's happened and normally it doesn't take long for most meals to come.

Contemplating where the picture is so he can jump ahead

Loving the game!!

Can you guess who's winning?

After beating me twice in Candy Land, Sax threw a fit - and a few game pieces - because I drew a picture card and was close to winning.  That was the end of playing that game!

Our lunch didn't show up until almost 1:30.  By the time I got Sax's food cut, salted, and buttered, the nurse was already coming in to do his meds.  Shortly after that, the RT showed up.  Sax decided it was a good reason for him not to eat then.  That was disappointing because he'd had such a good appetite the day before.  He also had to have the cap changed on his PICC line.  He didn't like having to wear a mask for it, but to make things easier, Buppy wore one too.

I suggested we nap for a bit since Daddy was coming to visit today.  I told Sax that he would have a lot more energy if he got his nap out of the way, then he could play with Daddy a whole lot more.  Child Life came in while I was trying to get him down.  The volunteer that was supposed to come today didn't show up, so they didn't have a formal activity.  Instead, she brought the planned activity to Sax's room for him to do - a ceramic elephant piggy bank to paint!  That made him happy!!  I still insisted he had to lay down for a bit longer and try to nap before he would get to paint.  After another hour, I gave up and let him work on his project.

He got his own brand new set of paints with the piggy bank

Trying to decide on the next color

The artist hard at work - I love this picture of him!!!!

His finished bank

We played Go Fish until it was time for supper.  

Mommy told him Go Fish!

That didn't cause too many problems because I only won one game, and all the rest we either tied or he won.

Daddy got here after supper and made a certain little boy very happy with the gifts he brought - especially the balloons!

BALLOONS!!!!

He also got cards from Grammy and Raine, along with a few presents, which he loved.  It was difficult getting him to leave all of his stuff in his room so he could take Daddy to the playroom.  But he forgot about that once he had the chance to show Daddy the trains, aquarium, and Monster trucks.

Which one is the little boy???

All of a sudden Sax grabbed his pants and said he had to use the bathroom.  When he realized there wasn't a bathroom in the playroom and we would have to go back to his room, he changed his mind.  I insisted we go back because I really wasn't in the mood for cleaning up any accidents.  And that is when the tantrum began.  Besides the yelling, which is pretty typical for him, he kicked off both shoes, then kicked them out into the hallway.  I picked him up and started back to the room, and he yelled and cried the whole way.  His punishment?  No more play room for the day if he's going to act like that!!!

At least we had a nice view to accompany his 'musical' talents!

I love sunsets

He finally settled down for his treatments when Daddy laid down with him in the hospital bed.

Like father, like son....

Since Daddy is here, I made a quick trip over to the NICU since it's night time.  I wanted to see if our favorite NICU nurse was working.  I was just going to leave a note letting her know that Sax was here and, if she had a chance to stop over, we'd like to see her.  The receptionist said she was working and brought her out.  She came over to Sax's room and visited with us for a little while.  The kids loved her too, and she was so great with Baden.  We still get cards from her and have sent a couple of our own to her via the hospital.   She said she still thinks about our Little Warrior quite often - that little man who touches so many lives.....  She's going to try to make it back later this week to visit again.  I told her we'll be here all week!

Now, at 10:50 pm, Sax is watching 101 Dalmatians for the 10th or 11th time today... still not asleep....  I'm hoping he crashes soon because he is definitely overtired!!

Tune Up 1 Day 1 and 2

WARNING: This post is kinda long somewhat graphic in spots.

I know I promised to update yesterday as things progressed, but honestly, I was 10 kinds of worried and completely exhausted.  I had been up until 11 pm on Wednesday packing and getting things ready for our stay here.  Then I was up at 3:30 am on Thursday to help get the van loaded and be at Mayo by 6:15 am to report for Saxon's 7:45 am surgery.  We got through the drive here without incident, and no complaints of starving from the little man (although I was starving by the time we got to eat breakfast!)  Sax insisted we wait in the family waiting room because he wanted to play on the computer.  

Normally I'd say no because it's full of snotty kids coughing, but since we were the first ones there, that wasn't a worry.  As a matter of fact, he was called back before we even saw any other kids come in!

I love how the OR has a screen that shows the progress of the procedures.  Each patient is assigned a number at check-in, then their number appears on the screen.  It tells if the patient is waiting to go to the OR, is in surgery, when the procedure is done, and when they are in Recovery.  

We took him back to the pre-op room and helped him change.  I was surprised when the doctors told us that he was going to have a PICC line put in.  At first we were both against it after what had happened with Baden.  After the specialist came and explained it in more detail and the benefits of having it, we consented, although we were both near tears.  Then another doctor came in and told us they decided they weren't going to do the PICC line because there wasn't a team scheduled to put it in....  In the end, they did end up doing it.  (Today when the PICC specialist came in, I heard her and the nurse talking, and one said the line is a "peripheral line" and not a central line, which is what Baden's line was.  Apparently that makes a difference when it comes to administering some of the antibiotics.)

Posing before going in to surgery

 Scrappy went in to his procedure at 8:14 am.  Daddy wore the "bunny suit" and took him in.  He stayed with him until he was asleep, then the two of us went back to the waiting room.  Since we had fasted right along with him, we checked out and headed to the visitor's cafeteria for some breakfast.

We hadn't been gone long, but when we got back, one of the doctors was already looking for us.  I was worried until Scot pointed out that they had both of our cell phone numbers and would have called us if it was anything serious.

A few minutes later, Dr Boesch, the pulmonologist from his surgery, came to talk to use.  He said that he had completed the bronchoscopy and lavage, but there wasn't much in there - which is a good thing!  He said there was a small concentration in his lower left lobe and his upper right lobe, but overall things looked good.  They cultured the lung samples separate from his sinus samples.

Another bit of time passed before we heard anything more.  Next was the anesthetist to tell us about the PICC line and get our verbal consent.  He said the PICC line was going to be put in after ENT was done with the polypectomy.  He assured us that there was a lot less risk taking this route with Saxon than leaving in an IV.  For the surgeries, he did have an IV already in, but leaving it in can lead to several problems.  It can cause scarring of the veins, it can blow a vein, or it can more easily become infected.  In the last 2 cases, the IV would have to be replaced, in which case any of those 3 things can happen again, and the cycle would continue.  The PICC line is less likely to cause those problems.

Again, I told them the best bet would be to put the PICC line in his right arm, as I had told them with the IV, because we didn't want it to interfere with his thumb.  His left is the only one he sucks, and when he's tired or not feeling well, you do not want to mess with that thumb!!  From what I can see, they must have attempted to insert it in his right arm, but for some reason it didn't work.  He has a band-aid on his upper arm, and the line is inserted in his left upper arm.  It doesn't seem to be causing any issues so far... thankfully.

They said the seepage is normal.  They cleaned it up today and rebandaged it, plus wrapped it in gauze to keep the line from hanging down.  It looked a LOT worse than in this picture today.

Finally Dr Cofer came out to give us the report on his sinus surgery.  She said there was very little to see in his actual nose, but the left sinus was full of polypoid tissues.  There was a lot to clean out in there, but in the past his actual sinuses were too small to get into.  They are going to culture everything extracted from his sinuses to see what grows.  This will be kept separate from the lung cultures.  She said he was "doing fine" and that we'd be able to see him soon because the PICC team was working on inserting the line.

He ended up being in surgery a total of 3 1/2 hours - his longest surgery yet.  But he did have a lot of work done, and it's better to only put him under once instead of repeatedly.  When we got to the recovery room, he was still pretty out of it.  He came to enough to pull off the bandage they had put under his nose to catch the bleeding, so his face was pretty smeared.  After a bit, he rolled his eyes up at me and asked for a drink.  The nurses brought him a freeze pop, which worked pretty well.  I fed him as he dozed in and out.  He asked for a second one when he was done, but we decided to wait until we got him up to his room because we didn't want him to have too much too fast.

He dozed for a while when we got to his room.

Buppy and Saxon snoozing.  Buppy is wearing Sax's scrub cap.

 

When he woke up, he got another popsicle as he was coming around more.  He was not a happy camper at first.  When RT came in to do his first nebby and vest, he freaked out because they brought the mask to use.  We think he was having memories of the anesthesia mask because he said he could smell cherries, which the anesthesia mask was scented like.  He fought so much he caused his nose to bleed again.  

I finally got him to calm down when his lunch tray arrived, and I fed him all throughout his treatment.  We couldn't believe how much he ate!!!  A bowl of brown rice with butter, 5 Twizzlers,  a package of gummy treats, a cup of chicken broth, a cup of rainbow sherbet, and some lemonade.  He asked me to get him some French fries, applesauce, and 2 more sherbet, so I obliged when we were done.  He was asleep by the time it came, but when he got up he did eat both of the sherbets!  The fries were cold, so he wasn't too interested in those.  Can't really say I blame him.

We were getting a little worried when, by 6 pm, he still hadn't peed.  He had fallen asleep at that point, and the doctors had said if he didn't go by 7, they were going to put him back on IV fluids until he did go.  With a little bit of coaxing from me and the nurse, we were able to get him to go when he woke up a little after 7.  But now today he's only gone twice.  With all the fluids he's taking in, he should be going more.  I'm not sure what their plan is about that now.  

The doctors are also a little worried that he has not had a bowel movement yesterday or today either.  I told them that he needs the Miralax and Colace daily to keep him going, otherwise he backs up and we run into more problems.  They are discussing the next step and keeping an eye on him.  I don't think there is a blockage at all because he has been passing gas quite frequently.  He claims he isn't, but I can definitely smell it :( 

There were some volunteers here at the hospital yesterday shortly after we got to the room and were getting Sax settled in.  They had a large tray full of stuffed animals - puppies, elephants, pigs, among others, and told him he could pick out whatever one he wanted.  Of course, he went for a big, fluffy, soft puppy.

Sax named him Muddy Buddy.  Not quite sure why since he's tan, but it's his pup and he can name it whatever makes him happy.

He slept pretty well most of the night last night.  The nurse was coming in to check on him and get his vitals, along with his antibiotics.  At 3 am he woke me up and said he was scare, could I please sleep with him?  How could I say no to that sweet little man?  Of course it wasn't very comfortable, so about an hour or so later I went back to the bench below the window to sleep.

6 am, bright and early, I wake to "Mommy, it's time to get up!"  He was in great spirits, his nose hadn't bled or leaked during the night, and he was ready to GO!  The whole day has been a challenge to try to keep him mellow enough that he doesn't cause his nose to bleed again - which it's done a couple of times.  We've had a lot of doctors and nurses coming through with a lot of information.

Here's the basic run-down (so far):

• Surgery went well - the basic problem seems to have come from his sinuses - he has probably been having sinus headaches.
• His cultures started growing h. influenza right away, which he's always cultured.
• He is NOT on droplet isolation for the first time ever!!! 
• He is still scheduled to stay 10 days at this point, but could still possibly culture other "stuff"
• His treatment plan has been decided as
• CPT 3x daily
• Nasal saline spray 4x daily
• IV antibiotics every 6 hours

After a few days, he should be able to go out to the courtyard to get some fresh air.  We just need to wait for his nose to heal.

A few pictures from today's activities:

Playing with playdough

Checking out the fishies in the playroom

They even have a Lego and train table!!

Making a craft at craftime for Mommy

His finished craft for Mommy

Doing thumpies and nebs (you can kind see his nose is crusty from the bleeding)

The view from Sax's room

Well, the little man is sleeping now, and I think maybe Mommy should take a nap too while I can!!  He's definitely going to keep wearing me out!

Great Strides 2013 - and Tune-Up Info

Yesterday was our Great Strides walk.  I am happy to report that our team raised over $700!!  We didn't have as big of a team as last year, in part because of the weather, but we still had 11 walkers:

Me, Scot, Raine, and Saxon
Steph Terry and her girls Marissa and Ana
Sam Wasmund
Steph Putzier and her son Gavin
Jason Becker

It was Jason's first year walking - it's always nice to add a new person to the group.  We survived the snow along the way, even though it was a little difficult to get through in a few spots with the strollers.  There weren't very many walkers overall.  We usually have to park several blocks away, but this year we parked in the lot right by the park.  We were outside with the kids during the program, so we must have missed the announcement of not going to the 2nd checkpoint.  We got that far and didn't see anyone else there with refreshments, which they normally have.  We also didn't see anyone coming up behind us.  But we got twice the walk in.  One guy from another team decided to go all the way to Soldiers Field, but that would have been too difficult through the snow with the strollers. (I also noticed the date is wrong on my camera!)

Scot, Saxon, and Sax's CF nurse Vicki

Supposed 2 be checkpoint #2

As for Sax's upcoming appointment, our plan is that Sax is getting admitted on Thursday after his surgery.  His tune-up will consist of IV antibiotic cocktail and CPT 4x daily.  He is expected to be in the hospital until May 19th.  It could be a few days more or a few days less, depending on what his cultures grow.  I will try updating here daily while we are in....

Spring is finally here!!

It has been an odd spring so far.... especially considering we had a couple inches of snow only 3 days ago!!  Today it was FINALLY warm enough to turn off the heat and to open all the windows in the house.

I know I've been absent a bit from Bloggingland, but it's been crazy busy around here with doctor appointments, home school, and the house addition.  Sax is still working on home school stuff, but we have cut back a little bit and are focusing more on reading and learning words.  He's very independent and self-motivated though!!  I went to get his numbers workbook (which I had picked up at the dollar store) and found he had gone ahead and done a few pages all on his own!  I am so very proud of the work he has been doing and the effort he puts into it!!  He worries about missing out on fun or playtime, but I make sure he gets plenty of that.  Often he will work on his workbooks while his sister is doing her homework, so they are doing it together and he feels more like a big boy.

Since the weather was so nice today, we decided to walk to the park after lunch and play until Raine got done with school and we had to pick her up.  He loves going down the slide, and played on the swings for a while.  He also tried the monkey bars, which is pretty appropriate since he is quite the monkey!!!

When we got home from school, the two of them went out to play in the back yard since it's finally dried up a little bit.  Hopefully the clay won't stick to them too bad and the fresh air will wear them out.  If the weather is nice still tomorrow, I am thinking about taking the kids to the state park for a picnic since it sounds like daddy may have to work.

We are nearing completion on the house addition - the bathroom had a few more things it needs, the living room just needs trim and flooring, the mudroom and closet need paint, trim, and flooring (but they were intentionally left for last since everything had been piled in those 2 areas), and we still need to get the siding on the house.

On Monday Sax had to go in for a CT.  He had just finished his 4th round of antibiotics since January, and his nose was still running green and congested.  A trip to Urgent Care a couple weeks ago had found him to have a sinus infection, so I had alerted Vicki because I was concerned after so many rounds of antibiotics and the recurring stuffiness.  Dr P's flag went up too when he heard about it, which is why he ordered the CT.

Vicki called Monday afternoon to tell us that she saw a small polyp and some 'gunk' in his left sinus, and that it looked 'pretty bad.'  Dr P was out of the office for a few days, but I got a response from him today.  Vicki said he had looked at the scan and sent a note to Dr Cofer's office to see if Sax can get in for a check up sooner than what he's scheduled.  Apparently the "gunk" Vicki thought she saw is actually flesh and is most likely more polyps.  He put Saxon back on another antibiotic - this time 3x per day - that he will stay on until we get in to see ENT.  Dr P is pretty sure Sax is going to need yet another sinus surgery, and soon.  So now it's a bit of a waiting game.  If I don't hear from ENT by Friday, I'm supposed to give them a call.  So hopefully we hear from them soon!!!!

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.

Time for a break!!

Yesterday I had to take Sax back to Urgent Care.  His eyes had cleared up for a couple days, then gooped up again.  His face was red and swollen up a bit, so I had a hunch, which Dr Mankoti confirmed - Sax has a sinus infection :(  His sinuses are clogged, he's not able to get much out when he blows his nose.  They put him on 3 mg Amoxicillan 2x per day for 14 days.  Vicki is going to check with Dr P to see if he should do it 21 days instead.  He seems to be feeling better already!!  I was told to up his nasal spray too...

He hasn't been eating much, which was confirmed yesterday when he stepped on the scale - down to 13.7 kg :(  All that hard work to get his weight up, and a sinus infection made him lose it all again.  We're hoping it's not going to be too long until he gains it back!!!!  And hopefully he's feeling better before we leave for vacation!!

Baby Thumpy!!

I was trying to get my little man into his vest and he handed me Raine's baby - "No Mommy!! Baby thumpy!! Baby nebby!!"  He went so far as to try to get out of his vest and put it on the baby.... Oh, I love this little man. He keeps me on my toes.  He's decided now, when he does his morning treatments, he doesn't want to sit on my lap after he's done with the nebby - which is good that he's moving around and exerting his lungs more.

Saxy with his bear and Raine's baby.

That bug he had took a little while to let go.  He was getting better, then got worse, coughing, fever, not eating, lethargic.  We had to make another trip up to see the PA, and made a call to Vicki to keep her posted since we had no idea of what was going on.  Thankfully we didn't have to go back to Mayo!!  They figured it was just a virus that was hanging on a little longer than normal.  He got his appetite back for a few days.  Now it's been 3 days since he's eaten a good meal - it was lunchtime on Monday when he ate a full meal.  It's frustrating, especially since it's so important for him to put on the weight!!!!  I'm hoping that it's a 'stage' and that he'll outgrow it soon!!!!

We have 2 weeks until Sax's next appt in Rochester.  And 2 weeks until Daddy gets his CF tattoo :-)  He's really excited about it - wanted to be sure he gets it before the Walk on May 7th!  I'm not even positive what it's going to be - don't know if he does either - just know he has the time scheduled. Mommy already has a Saxy/CF tattoo....

When it was fresh - purple rose for CF, 4 leaf clover for my little Irish man.

Our fundraiser is all planned - just need to get the posters made now and start hanging them up :-)  We are serving Sloppy Joes at the Aragon Dart Tournament 11am-5pm on Saturday March 5th.  The price is $3.50 for a sandwich, potato salad, and chips and $2.00 for each additional sandwich.  All proceeds benefit the Cystic Fibrosis Foundation. We are still looking for volunteers for 3 hour shifts - 11-2 or 2-5.  Please contact me if you would like to help serve or hang posters!!

The Great Strides walk is coming up on May 7th at 9am.  We walk rain or shine.  We have Strides for Sax team t-shirts available for anyone who is interested in walking.  You can register by visiting our Great Strides website.

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!!!!

(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!!!

Playing catchup!

I've gotten a few days behind again.  It feels like a Monday again. 

Friday, the 1st, was a good day and a bad day...  It was Daddy's birthday, so Mommy and Daddy had a date while Auntie Abbey babysat (and got to try her hand at nebbying and thumping the little man).  We went to a movie and out for adult beverages. 

Showing off Bumbob jammies

The kids were good for Auntie.... in spite of the bad day Saxon had been having...  When Mommy was in the bathroom he decided to ride his motorcycle down the back stairs.  It's only about 4 stairs, but he bit his lip pretty good.  I gave him a popsicle, which helped slow the bleeding.  Then another one... and then called the phone nurse.  After about 20 minutes it was still bleeding, which I thought was odd since with Raine's it was usually done bleeding within 5 minutes.  They told me to bring him in to check it out.... and ended up telling me just to give more popsicles.  That's about what I figured, but thought better safe then sorry.  He was on antibiotics for his ear infection, so they didn't think he'll need any for his lip.  It seems to be healing - just a little swollen still and has a funky white lip scabby on it.



Saxy's owie lip



I had to take Saxy in last Monday for a reweigh since his weight was down the week before when we were at the clinic... and drum roll please...datatatatatatata... He's up to his highest weight EVER~ 13.3 kg!!!! WOOHOOO way to go Saxy!!  Now just keeping going up up up!!



Me and Brooklyn

We got a new family member this week too... 10/10/10 my niece Brooklyn Kori was born.  Congrats to my baby sister Abbey!!  Saxy will have a cousin pretty close to his own age to play with!!