Tune Up 1 Days 4, 5, & 6, Followup, and a Crappy Conversation

Insert disclaimer here because of a 'crappy' conversation!  You've been warned!

Sunday morning, Scot told me he had seen some police-type sedans and SUVs in the parking lot.  Eventually a Sheriff and a City K9 Unit  showed up out there with, literally, hundreds of pedestrians dressed in colorful, dressy clothing and robes.

This is what we could see from Saxon's room.  A friend of mine later messaged me and told me that the Dalai Lama was at the hospital!!  It's kind of exciting to be able to tell him that he was there at the same time, once he's old enough to know who the Dalai Lama is.  We watched the motorcade leave on Monday too.  That was a pretty cool display of flashing police lights and sirens.

Daddy and Sax played with Legos for a while in the playroom on Sunday.  

Saxon also made a special bracelet for me for Mother's Day out of beads and a pipe cleaner.  He was so proud of that bracelet, I wore it for the rest of our stay.  But I love making my little man happy.

That itself was quite a challenge as time went by.  Saxon was feeling better, but he was also getting restless.  His IVs had changed to every 8 hours, but he still had to do frequent vitals checks and 3 CPT treatments daily with his nebulizers.  We compromised by going to the playroom when we had time and watching movies when we were stuck in the room.  I let him play on the Wii for a while.  He LOVES Mario Kart...

... and managed to talk Daddy into buying for him after he got out of the hospital.  He also got his picture taken in an elephant!

There was a tiger picture too, but Sax wasn't interested in that.  Not when there was a Wii just begging to be played.  We had a couple arguments about needing to go back to the room - and eating - and napping - because the Wii was so much more important!  Oh my!!!  But he usually gave in and crashed eventually.

He did NOT want to eat and he did NOT want to drink his PediaSure.  The nurse even threatened to have a feeding tube put in, but that didn't seem to matter to him.

Sax's cultures came back and, in Vicki's words, "his lungs look beautiful."  The only additional culture that showed up was some yeast in his lungs.  So h. influenza, staph, and yeast.  Not as bad as we thought.  The thought is that his sinuses were a majority of the problem.  He even got out of the hospital early!!!  Daddy came to get us on Tuesday instead of Sunday.  Sax was discharged with 3 new prescriptions: Bactrim in pill form 2x per day for 10 days, an anti-yeast pill 1x per day for 10 days, and a nasal nebulizer 3x per day for 21 days

He does NOT like the nasal nebulizer!!!

This is before his PICC line came out.  He was such a big boy when the nurse took it out - didn't cry or anything.  He just said ouch when she was pulling the tape off, but that tape can be pretty painful!  The nurses said they were going to miss him, but how can you not miss (and LOVE) this adorable little boy??

It wasn't much of a surprise when this little boy decided to take full advantage of Daddy being there and getting him ready!

It was nice to get outside and get some fresh air.

He even talked Daddy into taking us to Red Lobster for lunch cuz Scrappy wanted some crab legs - and insisted on cracking them himself....

..... and cracking mine too.  Such a nice little helper.


After 2 days home, we got to take his bandage off.  He was supposed to take it easy, but how do you tell that to a 4 year old boy as active as he it??  Fortunately he didn't have any problems with bleeding or anything like that.  He seems almost as good as new!!

Yesterday we had to go back to Mayo for his post-op followup.  Everything was looking good except....

There's  always an exception.

Except he hadn't pooped in 2 days, and his BMI has dropped by almost 20%.  Once we get him all cleaned out, it will probably go down more.  Dr P ordered an abdominal x-ray, and it wasn't pretty.  He is fully of poop and gas again.  (I'm going to post the x-ray as soon as I get it from the clinic.)

Dr P thinks it's all sitting low enough that we should be able to get him going with suppositories and enemas without having to have an ng tube placed and pumping him full of Golytely again.  This time we are using pediatric suppositories instead of the glycerin ones we had been given before.  I gave Sax one last night and we made a little progress, then a second one this morning, and made a little more progress.  Unfortunately from the looks of how much was on the x-ray, we still have a ways to go.  Sax tried fighting me when it was time to do the morning one, but when I explained that it was either that or the ng tube, he gave in, even though he squealed most of the time.

Hopefully in the next day or so he'll make more progress without needing the enema.  If he doesn't go enough in the next couple of days, I have to get back to the clinic, but we're hoping not to have to go that far!!!

Checkups and Norovirus

Sax had clinic on 2/18.  His chest xrays came back clear, his vitamin levels were good, and his weight was steady.  It was a full and busy day, with clinic appointments from 7 am until 4:15 pm.  We did our best to stay busy in between.  We got a beautiful view of the sun coming up. Saxon got to stay in his jammies for about half the morning just because we had to be at the clinic so early.  Some pictures from our day:

Sunrise over Rochester

Tired little boy

playing his leapster (Thanks Nana and Papa!)

Later in the day, my boys snacking, waiting for the next appointment

Daddy loves his Coke!

Got bored, so played with the wrap from his blood draw



Got a little snow while we were waiting

The only negative from his appointment was his culture results.  He cultured h. influenzae again, which is normal, but the amount that he cultured was high.  Dr P prescribed a 2 week treatment with Bactrim for him, which we started the following Saturday, Feb. 23.

On  Feb 26 Sax started having some tummy issues and was throwing up in the morning.  We had thought maybe it was from the Bactrim, except he'd been on it long enough that it didn't make sense.  He laid about most of the day and really didn't eat much or drink much.  Around 4:30 pm, we had some popcorn, which I thought would be good (like crackers) for his tummy.  That didn't stay down either.  This pattern continued all the way through Saturday, so he really didn't eat much of anything and wasn't drinking much.  I was worried about dehydration, so I called the clinic.  They had the same concerns I did and suggested getting him on Pedialyte to try to prevent dehydration.  It took him until today to finally finish off one bottle of it.  He has had a couple PediaSures since Saturday too, but he still isn't going to the bathroom much.  They are pretty sure his vomiting was caused by norovirus.

Last night when Sax started getting tired and whiny, I suggested he lay in my bed for a little bit.  He had been really clingy and had a few meltdowns.  He just didn't seem to be feeling very well and just wanted his mommy.  He had been coughing a little in evening too, which got worse as he was laying down, and he was breathing kind of heavy.  After an hour or so of tossing and turning, he decided he wanted to lay in his bed and wanted me to lay with him.  Less than an hour later, and more tossing, turning, and coughing, we decided to come down to the living room.  Sax said his throat, tummy, and back all hurt.  In the end, he slept on me in the recliner.  He was still up about every hour, so I decided we needed to call in to the clinic again.

When I heard back from Vicki, she thought this had been going on long enough, so we went in to see our local CF doc, Dr U.  Apparently mono and strep are going around in addition to the flu.  All of his labs came back normal, but there is a chance that the 24 hour strep culture comes back positive.  For now, we're going to go back on the Bactrim and really push the Pedialyte.  Unfortunately his weight dropped from 16.4 kg at his checkup on 2/18 down to 15.4 kg today.  He's so skinny as it is, we need to really push to get his weight back up.  He doesn't have any extra fat or weight he can afford to lose.

I was really happy that Sax's appetite seemed to perk up a bit at supper tonight.  He ate a whole DQ hamburger (minus the bun), a big scoop of mandarin oranges, and half of a mini M&M Blizzard for supper, and about an hour later he asked for a piece of jelly toast and ate a little over 1/2 of that.  We're going to be hitting the PediaSure and DuoCal hard this next week, and adding in some ScandiShakes.  I have to call or email the clinic tomorrow to let them know how he's doing, and I'm going to see about getting him back on weekly weigh-ins at our local clinic.  That way we can keep better track of his weight and catch any drops right when they happen.  Hopefully he'll be feeling better soon!! (and hopefully I'll have time/remember to update again soon!)

Best. CF. Clinic. Visit. EVER!!!

Even Vicki and Dr P said it was... but I'll get to that in a second.

We finished up our Christmas shopping today for the kids, save for a few stocking stuffers left to pick up.  Scot, Sax, and I hit up Mill's Fleet Farm first, then hit up a restaurant we've never tried before thanks to a recommendation of a friend: Whistle Binkie's on the Lake.  Nice view, good food, and decent prices :)  We'll be going there again!  We're always looking for somewhere differet to try instead of the usual haunts, which can get old after a while.

Sax did what I can only describe as the most disgusting thing I can think of.... Daddy took him to use the bathroom.  While Daddy had his back turned, Sax decided to wash his hands - thinking the "pee biscuits" in the urinals were soap!!! GROSS!!!  Daddy scrubbed Sax's hands and gave him a huge lecture on what IS and what IS NOT soap.  Ugh - makes me shudder!!!

Sax had to be at the clinic at 1 for his GI appt.  It was just an annual check and everything looked really well, save for some mild bloating.  Dr E ordered a celiac test and vitamin check for his next checkup in Feb.

After GI, we had appointments with Vicki, Dr P, then the dietitian.  I wasn't sure why we were meeting with dietitian other than Sax's BMI has been varying so much.  I figured it would be another pep talk about getting him to do the impossible and gain some weight.

Vicki was in a really good mood when she came in for her appointment with Sax, in spite of a horrible head cold and sinus infection (very thankful she didn't want to share and masked up!)  She checked Sax out and send Dr P in for his part of the checkup.  Dr P seemed a little more excited than normal too... we wondered what was up.

We were told that, since Saxon started coming to CF clinic, he had his very best checkup.  Ever.  They said they have not seen him this healthy in the past 4 years.  His pulse ox was 100% and all the gunk in his lungs has cleared out.

The reason for the appointment with the dietitian, we discovered, was a final push to put some chub on the little man because in January his BMI was 59%, in June his BMI was 37%, and in August at his last appointment his BMI was down to 18%.  With the rate of decline, the discussion of a feeding tube was being approached again.

Well, Sax decided that's not what he wanted - because he finally gained weight.  And quite a bit for the time period!

He went from 14.9 kg to 16.3 kg in the last 3 months.

His BMI went from 18% to 64% in the last 3 months.

For someone with a serious life-shortening disease, hearing that he checks out the healthiest they've ever seen is one helluva reason to celebrate :)

So for his dietitian appointment, we spent the time discussing how we can keep him gaining, and what's going to happen when he turns 5 and we can no longer get WIC to cover his PediaSure.  The dietitian sent me some links and also suggested I look into finding 'homemade pediasure' recipes, which I've started checking into.  I'm hoping we can experiment and maybe find something that will work before we actually do run out of PediaSure.....

Dropping

Haven't had a whole lot to post lately - which is a GOOD thing cuz that means Sax hasn't been sick.

On Friday, though, Sax had his quarterly checkup.  We got to meet the new CF nurse at our clinic - Marcia.  I've talked to her several times on the phone. And Sax has gotten taller.

But he hasn't gained any weight.

He's actually LOST weight.  His BMI has dropped from 26% to 18%.

Sax is going through another "I don't wanna eat" phase.  And it's kinda scary.  I don't want him to have to get a feeding tube.  But I can't force him to eat.  I try offering a variety of different foods for him to eat, but it seems he wants the healthy foods.  He won't dip his apples in carmel.  He doesn't eat fries anymore.  It's frustrating some days.  I guess the saving grace is that he does drink his PediaSure, so we have been loading that up with as many calories as possible.  I have a few tricks up my sleeve still that I'm going to try.  I'll report back on them if they do work out....

Dr P has decided to increase Sax's dosage to 4 Creon 12 with each snack, 5 Creon 12 with each meal, and 6 Creon 12 with fatty meals.  He also scheduled an appointment with GI for when he has his next appointment.

On the bright side - Daddy got inked again!  I took the kids to the park to play while he got his 4th rose - one for every birthday of Saxon's.  Sax decided it should be purple this time :)



Always Playing Catch Up...

So it's been a while since I have updated this.  Sometimes life gets in the way.  Sometimes there's just nothing to say.  Sometimes it's just too hard to say what you really want to say.  I don't know.

It's been a rough few months.  Sax became a big brother on November 12, 2011, then we lost our Little Warrior on November 20, 2011.  It was a very difficult time for all of us, even though Sax doesn't completely understand all that happened.  You can read about Baden and his life and struggles at www.caringbridge.org/visit/BadenScot.  Sax tells us often that his brother is an angel and has wings in heaven.  He also tells me often that he misses him.

Saxon really hasn't had too much happen (other than a couple minor colds) to write about until now.  Christmas was nice and quiet, thankfully, and we got to spend it with our family.  Here's a nice group pic :)

We spent 2 days this past week at Mayo.  On Tuesday he had a full day of appointments, plus Mama had a morning checkup (which went great!)  Sax's first appointment was at 7am for a fasting blood test.  Raine stayed at Aunt Abbey's so that she wouldn't have to get up so early to be dropped off.  I was up at 330 and couldn't get back to sleep.  We had to leave about 5am anyway.  Daddy and I couldn't have anything to eat either because it wasn't fair to Sax.

I have a problem with needles, so Scot went in with him for his blood draw.  He is such a trooper!!  When they stuck him with the needle, he said "Ouch."  After a minute or so, Sax said, "I wanna be done."  Then when they took the needle out, he said "ouch" again, then asked if he could have some stickers now.  That was it.  No tears, no fighting or fussing.  (Must get that from Daddy - hahaha).

Daddy took him to the next appointment - for his chest x-rays - without me since I was at my appointment.  Sax didn't want to put the hospital shirt on, but sat just fine all by himself and posed for his x-rays.  He's NEVER been as cooperative as he was Tuesday!!  Such a BIG BOY!!! (Although it is sad that he is so used to the procedures that he knows what to expect....)  I also didn't make it back from his audiogram, but apparently that was better than it had been in December.  (He had an ENT-only appointment in November, where he practically failed his hearing test and we found there was fluid behind his ear drums again.)  Sax knew what he had to do and was having fun flinging frogs, trains, bugs, and other miscellaneous items around the room when he heard the beep (yes, he was supposed to be flinging them.) 

I met up with "the boys" right before the appointment with Dr Cofer, his ENT.  Her assistant checked him out, then she checked him out.  There is still fluid behind his ear drums.  His sinuses under his eyes are swollen and it looks like he has bags under them.  There are also a few polyps in his nose again in spite of using Nasonex.  She is going to put another set of tubes in his ears and remove the polyps.  She ordered a head CT to check out his sinuses and see if there are any deeper polyps and to see if his sinuses are opening up.  We warned her that Sax does NOT like the CT machine, so she also ordered sedation for him.  The CT was scheduled for Wednesday and surgery scheduled for Wednesday, January 18th.

The last 2 appointments for the day were with the CF team - Vicki and Dr P.  Vicki did the usual checkup except for the throat culture.  When Sax has his surgery next week, Vicki and Dr P have requested a bronchial lavage, so they will do the culture then.  We watched Cars 2 while waiting for Dr P.  Sax fell asleep and stayed asleep through the entire appointment.  He listened to Sax's lungs and looked over the x-rays.  His upper lungs have cleared up quite a bit.  The deposit that Dr Henry has pointed out didn't seem to be showing up any more either. 

We really think switching the Pulmozyme back to morning may be helping :)  I've also been using the Wii Fit to bribe Sax to do his morning treatments - after thumpies and nebbies, he 'gets to' run after a puppy.  He has fun and exercises his lungs a little more!

We were also very happy to find out that his weight has increased - he's up to 15 kg!!  That's the highest he's ever been!!!

Wednesday we went in for Sax's CT - and that was a mess.  We were told he needed to fast because of the sedation.  His appointment was at 8 am.  About 9 am the technician finally came to get us.  They weren't planning on sedating him and just wanted to strap him to the table.  We knew it wouldn't work, but just to show them, I tried laying Sax on the table.  He freaked out!  It was like trying to hold down a wild animal!!  I told the tech - again - that he was supposed to get sedation! 

I don't understand why they weren't ready - it was noted on the appointment sheet we got.

We were sent back to the waiting room.  A few minutes later a nurse came in to tell us they were waiting for the anesthesia team.  Because of Sax's CF, he can't have the regular sedation.  The CT team apparently didn't know this, even though it was in Sax's orders - grrrr!!!!  We were moved to a private waiting room until 1015 when they were FINALLY ready.  By this time, Sax was extremely upset because he was hungry and thirsty.  I don't blame him!  He hadn't had anything to eat since 7pm!

I feel bad about lying to Sax to get him to take the anesthesia, but it had to be done.  We were back in the room with the CT machine, and he was getting scared again.  I told Sax that we were going to do a nebby treatment so he wouldn't be afraid to put on the mask.  This did the trick - within a couple minutes he was sound asleep.  He needed an IV as a precaution with the anesthesia.  Then it was another hour at the hospital while he was coming out of it.  He wasn't completely up to par until later in the afternoon. Sax was suffering from motion sickness on the patient shuttle when we went to pre-register for his surgery, and then in the van.  Since his stomach was empty he was just vomiting up mucus and stomach acid.  I felt so awful for him.  Around 3 we finally got him to drink a little water and eat a few crackers.  Later in the afternoon/early evening, his appetite picked up and he ate some more food.

I'm sure I won't have a chance to write again until after his surgery, so it will be Wednesday night or Thursday, depending.  The surgery is planned to be outpatient, but it depends on how deep into his sinuses Dr Cofer has to go.  We were told to pack a bag just in case....

Weighing In and Weighing Up

It was a good weigh in for Sax on Sept 28th, and I'm expecting another good one this Wed too.  He was up to 14.6 kg.  The Prilosec seems to really be working well!  Yay - making some progress!!  We also just got his PediaSure and DuoCal refilled, and this time they gave us the PediaSure 1.5, which means we get 50% more calories per can before adding the DuoCal.  That should really help too!!

Daddy and I went out last Saturday to celebrate his birthday.  We were only gone a few hours and the kids were home with a sitter.  Just as we were packing up our leftovers, the sitter called to say that Sax was sick and throwing up all over :(  We hurried home.  He was still on antibiotics, so I was surprised when we got home and he had a fever.  He threw up again after we got home.  The sitter stayed with Raine while Scot and I took Sax up to the Emergency Room, since Urgent Care was already closed.

While we were in the Emergency Room, Sax threw up again.  The doctors checked him over and didn't really find anything.  They figured it was just a stomach virus.  They gave him a dissolvable tablet to stop the nausea, with another one to take home with us and a prescription for more if we needed it.

When we got home, the sitter's mom came to pick her up since she was out and about anyway - and it was still before 10.  Sax and Daddy curled up together in Daddy's chair and ended up crashing there for a couple hours.  Raine and I watched some stuff on Nick for a while, and I ended up falling asleep in the recliner.  He seemed fine the next day, but was mad at me since I wouldn't let him go to Sunday school.

The little man has been testing his limits lately, which is getting really frustrating for me.  Daddy has been working on Saturdays now since my doctor appointments are moving to a weekly basis.  The boss said he could go to my appointments as long as he makes up the time.  It gets frustrating at times because the kids seem to listen to him better than me.  Maybe it's just because they spend so much time with me.  Who knows.  They're both napping right now, so I'm going to enjoy the quiet :)

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.

Checkups for Sax and baby

Haven't posted in a while, but fortunately there hadn't been anything to post about!!  Saxon's checkup 3 months ago was good, with the exception of him needing to gain weight.

Yesterday we were back in Rochester for another 3 month checkup.  Unfortunately this appointment wasn't all we had hoped it would be.  Our first appt was with x-ray.  Of course Daddy had to take him since Mama can't go in there with the little one on the way!!  Sax did NOT want anything to do with the x-ray - he screamed and fought Daddy enough that he had red spots under and around his eyes.  As soon as he was done with that, it was on to see Vicki and Dr Henry.  Normally we would be seeing Dr P, but he is out on medical leave.  He should (hopefully) be back sometime in Oct, but they're not positive.

Sax's weight is at 14.4 kg, up only .1 from his last Rochester visit, but up .4 from his 3 year checkup here in Albert Lea.  Again we were told to fatten him up!!  (We figured that one is a given.)  He fought the throat culture like crazy too, when he had been doing them so well.  Dr Henry pulled up Sax's x-rays when Vicki was done with him, and the films didn't look too well.  She pointed out how there was more infiltration in the upper lobes of his lungs and along his heart line.  (For now we are upping Sax's CPT to 3x per day and adding in 5 minutes of manual CPT on each side for those upper lobes.  The way his vest fits, the upper lobes are where the straps are, so there isn't as much compression in that area.  Hopefully this will work!!)  She said there was a spot on the lower part of one of his lungs that she was concerned about.  Dr Henry said the spot is either a dense clogging of mucus, or could also be a spot where part of his lung has collapsed.   This showed up on the May x-ray also, I guess, but Dr P never mentioned it.  Sounds like for now they are just going to watch it.  Sometime next week we should have the results back from Sax's throat culture.  After discussing the awful effects of Zantac with friends on CysticLife, we've also gotten Dr Henry to give Sax a prescription for Prilosec to see if that will work.

Today Mama and baby had a checkup - 21 weeks, 3 days.  We found that the pocket of blood has not dissipated at all - looks to be about the same size it was before.  Mama is still bleeding.  Baby weighs about 1 lb now, though, is the right size, and the baby's heartbeat is strong.  We weren't to excited to find out the baby still has echogenic bowel.  This could mean either 1) the baby swallowed blood and it's taking a while to digest, or 2) it could be a precursor to meconioum ileus, which would mean the baby would have CF.  If it is meconium ilius, the baby will likely need surgery right after birth.  Of course, the surgery would have to be done in Rochester.  We have told our doctor here, Dr Yahya, that we would like to have the baby in Rochester.  We have already been over to see a high risk specialist there, Dr Rose.  According to Dr Rose, the game plan is that we will start steroid injections at 24 weeks to help baby's lungs develop.  Because of the complications I have been happening (which, according to Dr Rose, are rather rare) he said it is quite likely the baby will come before 34 weeks.  He also said they would be following my pregnancy a lot closer and we would have frequent ultrasounds.  I need to call him to see what the plan is.  Albert Lea doesn't seem too willing to follow what the specialist says.  We may end up bypassing Albert Lea altogether depending on what Dr Rose says.

Hopefully we'll find something out soon and get everyone on the same page.  It's hard to manage care when people aren't communicating and the right hand doesn't know what the left is doing!!

Just Another Crazy Month!!

So April 22 was my 30th birthday - and 30 has taken me on one helluva ride so far!!!

Raine and Sax had a new sitter that night, our friends' daughter Ellery, and they absolutely LOVED having her sit for them!!  Yay!!  We stopped in to check on the kids and see how they were getting along, bringing them a big piece of dessert to share (loaded with sugar of course!!)

That weekend was pretty mellow even though Easter was on Sunday.  The Easter Bunny hid baskets in the house for the kids and eggs and toys in the yard.  This year was kites, bubbles, more bubbles (always a huge win for my kids!!), and frisbees.  We knew the Bunny had left 42 eggs, so we were sure to tell Raine that she and her brother each got 21 eggs.  Sax got a 2 minute head start to try to find them... not that it helped at all.  He wasn't sure what he was looking for, but after finding the first egg, he got the idea and he was off!!  The kids put all of their change together into their change jar.  They are saving up for the fair, of course!! Any money they save up is theirs to share and spend come fair time!

Monday Sax had a WIC appointment and recert.  This was a FABULOUS checkup, as his weight has climbed to 14.7 kg, which put him into the 60th percentile - WOOHOO!!  GO SAX!!  This time, along with the PediaSure we usually get, we also got 6 cans of DuoCal - 2 per month.  It seems to be working though!

Wednesday was another HUGE day for us!  We found out Saxon is going to be a big brother!!  I am due to have baby #3 on Dec 25, 2011, so it will be one heck of a Christmas!!  We are not going to find out what we're having, and we're not going to find out if the baby has CF.  There are way too many risks involved with having an amnio, and we'd rather not risk it.

The rest of the week was pretty mellow - until Sunday.  Sax and Raine were playing in the living room with their golf clubs.  Saxon had taken the end off of one of them and put it in his mouth - just long enough to bump into something - OUCH!!  His mouth was bleeding like crazy, so we rushed off to the ER.  What we found out was he gouged under his tongue and put a hole in his soft palate in the back of his throat.  There's really nothing the doc could do for him, so they just sent us home and said it would heal on its own.

We thought that would be the end of it.  Nope.  I ended up taking Sax into Urgent Care on Tuesday.  When he woke up his right eye was matted shut, and it was pretty red most of the day.  I noticed it had been a little goopy on Monday.  Yup, in spite of the fact he's not around a lot of kids during the day, he had gotten pink eye.  The only thing I can think of is that maybe he got it when we were at the grocery store or if Raine brought it home from school with her.

What a fun 2 weeks!! Always waiting to see what happens next!!

Oh my, a little behind!!

Well, I guess part of the reason I haven't had much to write lately is that not much has really happened lately.  Ok, that's not entirely true.  We've had a little bit going on, and pretty busy schedules.

So to bring things up to date:

Sax went through ECSE screening to make sure he didn't need any additional help besides the obvious complications from his CF.  He did AMAZING on these tests!!  He was in the 6-year-old range for his vocabulary and recognition of objects and pictures!!  Yay!!  We knew he was a smart little whipper!!

Sax hasn't been sick in the last 2 months, so nothing to report from that front :-) 

He's been doing pretty good on the potty training too!!  He goes a couple times a day and is usually pretty good about telling us when he has to potty.  Going #2 hasn't been quite as successful, but he's trying! When I ask him if he's done, he loves telling me "Almost Mommy!! Almost!!"  He's such a little cutie!

Since Sax was doing so well on the Duocal, it's been decided we're going to keep him on it, 3x per day.  We're also trying the Pediasure 1.5, which finally arrived today.  Been waiting for that one for a while!!  Not sure if it tastes any different - it's in the fridge cooling down, so we'll see how well he likes it when it's cold.

It's Spring Break form school, so Raine is home today and Monday too, and was home yesterday.  The kids have been playing together pretty good today, not so much yesterday, but hey, they ARE siblings.  Just glad they're trying to make my birthday a good one!! :-)

Daddy also reminded me that I need to give him the password so he can update the blog once in a while.  Share his thoughts a bit.  So there may be some more input from him on here in the near future :-)  Well, now to spend more of my day with my kids.... hopefully I'll update again soon but with all good news again! :-)

Just a Typical Mayo Day... Or Daddy Got Inked

Wednesday was our day for Spring Checkup!  Hi ho, hi ho, it's off to Mayo we go... or went.  It was a busy day.  It's a really good thing that the way the pre-appointment time was NOT an indication of how the day would go!!

We got off to a late start right away.  I hurried to unload my displays from the trunk so I could put the stroller in, keeping Raine moving and getting ready, packed the diaper bag, and let Daddy finish getting Sax ready.  Since we had to be there by 9am, our plan was to leave about 7:30am.   We had to drop Raine off at my friend's house since she couldn't be at the school before 8am, then dropped off some stuff for a client of mine and decided to hit McD's on the way out so Mama could get a Frappe and Daddy and Sax could get some food.  BIG MISTAKE!!! 

We got the Frappe and the OJ and were asked to pull ahead cuz they needed to make the steak for Daddy's burrito.  We waited...... and waited..... and waited.... and waited..... the worse part of where they want you to wait is that is where the smokers go to have their cigarettes, so even with the windows closed the smell of the smoke got into the car.  Finally we looked at the receipt to see if there was a time on it - we put our order in at 7:44.  By now, it was 7:59.  I sent Daddy in while I pulled the car around to the other side. 

Scot: Where is our food?
Lady: I gave it to you.
Scot: No, you didn't.
Lady: Yes I did.
Scot: You gave me the Frappe and the orange juice and asked us to wait.  Can I get a refund for the food since we're not going to get it?

She turns around and, sure enough, our order was still sitting by the window.  I don't think they would have ever brought it out!!!  So now we're already about 10 minutes behind (accounting for the 5 minutes it normally takes to go through the drive-thru).  We don't have time to deal with talking to a manager, so that got moved to Mommy's to-do list (and it got done Thursday, too!!)

We were cruising along pretty good until we got halfway to Austin and the roads started getting slick, so we had to slow down a bit.  Then when we got almost to 63, the car started acting up.  Daddy thinks it's the torque converter clutch solenoid (tcc).  When I try to speed up, the accelerator pushes back and the car doesn't want to speed up.  If I pull over, turn the car off, and let it sit for a minute, then it usually resets and works again.  Sometimes it resets and works without having to turn it off if I drive like that long enough, which is what must've happened because it started accelerating again ok.  That is, until we got off 52 and were heading to the clinic :-(  Daddy's going to see what he can do about that. 

We parked at the Damon parking ramp, as we usually do, and walked the subway to the clinic.  It never fails - old people walking 6 wide and slow down the hallway so you can't get around them, and stopping to take pictures.  Scot was putzing behind them, so I took over the stroller, said "EXCUSE ME" and speed-walked past them and the 3 blocks through the maze of subways to Mayo.  Saxon was beeping the horn on his steering wheel on the stroller the whole way too, so that helped and people got out of our way!!  We ended up being about 10 minutes late for our first appointment, which was with the social worker.  But that ended up being alright because she wasn't on 16 and ready to go either.  It all ended up working out.

Our appointment with the Social Worker was one that we had requested in addition to the other appointments we had.  We have been having a lot of trouble with our local Human Services office when it comes to insurance.  Our income has not changed even though I started a second job.  Between the 2 jobs I still make less than I had originally claimed on the initial application.  And Scot's income hasn't changed.  However, because I started the 2nd job, the case worker has been threatening to drop Saxon off the insurance because all of a sudden we're too close and are going to go over the income guidelines.  I don't understand this.  Plus she won't tell us WHAT the income guidelines are!!  So we asked the Rochester worker for some help.  She was able to give us contact information for an advocacy program for our county.  (I haven't had a chance to call them yet - but that's a whole different issue.  It's on my list of 'things to do' this week.)  I'm just so tired of the case worker calling and threatening us, then getting letters in the mail saying they don't have our info when I personally hand-delivered it prior to the deadline.

Our next appointment was with Vicki and Dr P.  They listened to him and asked questions about behaviors and appetites and stools and coughs - all the normal stuff.  We reviewed his treatments.  I suggested maybe increasing his CPT time to 25 minutes since it seems that things start loosening up about the time that his vest turns off.  Vicki said that was fine because eventually he'd move up to 30 minutes, so this is a halfway step.  She said there is no reason to do more than 30 minutes in any one sitting because the research shows there is no improvement with more time.  He doesn't seem to notice the extra 5 minutes anyway.  When it was time for Dr P to listen to him, Sax climbed up on the table and was ready to go like a big boy!  Dr P listened to his heart and lungs, and Sax took his big, deep breaths.  We mentioned how gassy Sax still seems to be, and Dr P said it sounded like there was quite a bit of gas in his abdomen.  It was decided that when we come back for his next quarterly checkup that we will see Dr E, the gastroenterologist.  There may be some digestive issues going on.  And when Sax is on his Zantac, it seems that he's a lot more gassy.  He's been dealing with a lot of gas issues since he was born, so we're not sure what to think.....

Sax has grown almost an inch since his appointment in November.  Of course everything is metric, but he's gone from 88.0 cm to 90.7 cm tall, which moved him from 30% to 36% for his age.  Like I said before, we knew he'd be short.  We have no control over that.  There was some concern over his weight though.  Since November, he has only gained .10 kg.  Ok, so it's a gain, but it's not much.. it's not enough.  With him getting a little taller and not gaining weight to go with the height, he has dropped from 61% to 53%. His BMI ranking has dropped from 83% to 67%.  We're happy he's still above the 50% mark, but he's getting closer and closer.  It's not helping that he's been so picky and not eating much lately!! (although last night he did eat green beans and steak!!) 

We didn't do a blood test this round, but probably will next time and recheck his iron levels.  Of course there was the throat culture too.  We haven't gotten the results of that yet, but I expect I should be getting those soon.  Sax is such a good boy when Vicki sticks the swabs down his throat.  He doesn't fight or bite down on the swabs.  He's also very cooperative when it's time to check his ears and nose.  Sax was told he's one of their best patients for that!! :-)

Our next appointment (and the last one Daddy was at for the day) was with the dietician.  We discussed options for increasing his caloric intake.  For his age (with his condition) his caloric need is about 2000 calories per day - which is what a normal healthy adult needs, to put things into perspective.  He loves his vanilla Pediasure, but that's not quite doing it.  Our dietician has requested a case of Pediasure 1.5 be sent to us.  One bottle has over 300 calories in it.  If he like it, we may be able to get that from WIC.  She said we can also add the Carnation powder to it, which we had been doing with his whole milk, to increase the calories even more, or buy the strawberry or chocolate syrup.  And butter.  In spite of what the WIC nurse says, butter is very very good for him.  Cholesterol is not an issue for him because to have cholesterol problems, you have to ABSORB fat.  He doesn't do that anyway, so we're just to disregard them. 

We're also trying something called Duocal.  The dietician has requested a sample of that be sent to us too.  There are 42 calories per Tbsp, so it's very close to the caloric content of butter (except without the fat and salt).  The Duocal can be added to his food and beverages and is supposed to add calories without changing the taste or texture of the food. (More info at http://www.myduocal.com/.)

Now, during all of this is when Daddy snuck away, but for good reason.  He is doing his part to help create CF awareness..

Daddy's new CF tat - 65 Roses and Saxon.  This is his left forearm where it can be visible year round, and he's more than proud to explain to everyone exactly what it means :-) 

Daddy made it back just as Mommy and Sax were getting into the car, so he missed lunch and our ENT appointment.  Mommy and Sax went to Red Lobster and had a nice date and were served by our favorite waitress, who just happens to always be working when we're there.  Unfortunately there really aren't many kid-friendly places to eat in that area.  We usually prefer to eat lunch early and avoid the crowds.  We didn't have that option this time because Sax's appointment didn't get done until noon, but we had until before the ENT appointment.

We saw Stephanie and ended up seeing Dr Cofer before we left.  Mommy's been a little concerned because Saxon's left side of his nose has been bleeding a little bit.  I told them he's been doing well with his Nasonex, but we haven't been doing the saline since we weren't told to continue with that one.  Stephanie looked in his ears - which his left tube still looks good and is open, and his right has healed nicely - and looked in his nose and though she found something.  She called in Dr Cofer and they decided to do another nasal endoscopy.  NOT fun holding down a 2 year old while the doctors shove a tube and camera up his nose, then shove a suction tube up there.  Poor little man!!  At least it didn't bleed much this time!!  The sucked some nasty boogies out so they could see better.  It was a pretty clear path too!! Only one little polyp starting to form in the left side, and nothing in the right!!  Yippee!!  Dr Cofer gave him clearance to come back in 6 months now instead of 3.  The only change she made to his routine is the addition of saline nasal spray once or twice a day to help clear out the nasal mucus.

So all in all, it ended up being a pretty good day of appointments.  We stopped on the way home and got a new pet (for Mommy).


My hamster Saxon named Mouse

So I'll leave you with some fun pictures from the past week.....

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...