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....

Time for a Tune-Up

We got the call we've been waiting for from the doctor's office.  The plans are all set.  Next Wednesday, May 8th, I'll be taking him in for an appointment with Dr Cofer, his ENT.  This will be for his pre-op consult.  I will have to call in on Wednesday night to find out his report time for Thursday.  He will have surgery on Thursday.  They will be doing a bronchoscopy along with removing the polyp.  Marcia, the other CF nurse, said that the "gunk" in Saxon's nose is actually tissue - and the start of more polyps. Dr Cofer is going to clean all of that out.  Then he will be admitted to the hospital for a 'tune-up'.  I'm not sure what all that entails, but from asking a few friends with CF, it sounds like he will be doing extra treatments and IV antibiotics.  Dr Cofer and Dr P want to be thorough.  After they clean him out, they want to be sure we kill off all the bad stuff.  Hopefully we'll be able to avoid antibiotics for a while then!!!!

In the mean time, we've been (trying to) enjoy the weather.  The weekend was gorgeous - spring really was here with temps in the 70s, sunshine, and the grass started turning green!  It was sooooo nice.  We went for a few walks - one day around the lake, another day on the trail near our house.  Sax enjoyed the trail more than the lake.  You can see why....

 He had never held a turtle before - and we saw 3 of them along the way!  Mommy caught a little one to show him, then he caught these two.  He was pretty excited!!!  He really wanted to keep one and bring it home, but I convinced him that it was better to leave it there and we could come visit it on another walk.


We also spent quite a bit of time playing outside.  The kids have taken some boards and old pallets and have been practicing hammering in nails.  Sax was a little mad, if you can't tell, because he was pounding a nail into some wood "and I heard a plop.  A bird pooped on my pants!!"

 But check out that gorgeous sunset!!!


If only the great weather would have lasted.....


Because this morning, this is what we woke up to...

3 of the 4 sides of our fence were damaged by fallen branches.  Scot didn't go in to work right away because the shop didn't have any power.  The city police were contacting the television stations and telling everyone to stay off the roads because of downed power lines and trees.  The kids enjoyed a snow day... on May 2!!!!  Various parts of town ended up with 11-14" by the time it was done.  It was heavy, wet snow, perfect for making a snowman.... or a snow fort.

The shoveling wasn't too easy though!! "This is hard work" as he is shoveling the neighbor's driveway.

Raine is really hoping there is school tomorrow.  We're supposed to get a little more snow tonight and tomorrow, then it's supposed to switch over to rain.  Our Great Strides walk is still on for Saturday - we're just a little bit worried about actually getting there if the roads are too bad.  I hope so, cuz I dyed my hair, Saxon's hair, and Scot's goatee purple (well, mine and Scot's are actually dark burgundy.)  Tomorrow I'm planning to do Raine's.  

But maybe with this weather, we'll just need purple stocking caps??

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!!!!

An Intro to Homeschool

Sax is feeling better.  His appetite is back with force! He's been eating Kudos bars - he says his favorite is both Snickers and M&M's.  Normally I wouldn't buy those more expensive bars, but since it's something he will eat and they have a little more in the way of calories than granola bars, we've decided the extra expense is worth it.  Especially since he's been eating anywhere from 2 to 4 at a time.  Sax has also decided he likes "beef roast" sandwiches (Arby's roast beef sandwiches).  We're still trying to work more and more foods in.  One of his other favorites is rice.  We picked up a bunch of Knorr Rice Sides on sale, which made the little man very happy!

Mom and Sax have also been working on our homeschooling.  A friend added us to a facebook homeschool support group that she belongs to.  I'm also looking into the Minnesota HomeSchool Association.  They have many resources available, and annual membership is very minimal.  This week our new workbook should be arriving too!!  Kinda excited for that!  We are going to use page protectors over the worksheets so we can reuse them multiple times.  I'm working on a schedule for our studying and have been trying out various things to see how they'll work.

I tried playing videos through YouTube for his Science last week.  We combined art with Science.  We watched 3 videos, about 10 minutes each, about dragonflies, tadpoles, and caterpillars and talked about metamorphosis.  After that, Sax drew pictures of the 3 main stages of tadpole metamorphosis (egg, tadpole, frog) and caterpillar metamorphosis (caterpillar, pupa, butterfly.) I need to go through and screen a few more videos.  Instead of watching them through the computer, though, I'm going to stream them through the Wii since we have that hooked up online now.  I've also been watching for specials on Animal Planet, Discovery Channel, and On Demand.  We watched a couple interesting ones on deep sea life. (I think the bright colors help keep his attention.)  We've also found a few good workbooks at the Dollar Tree - numbers, shapes and colors, letters, and first words.

I'm planning a trip back to the library this week for us - maybe for storytime if we can get going early enough (we're really not morning people!)  We need to get some new books too.  I've looked for books about homeschooling, but haven't had much luck, so I'm just going with my own thing right now and seeing what is and isn't working for him.  I think once construction is done and the office is set up, it will help.  We will be able to go in there, close the doors, and be away from distractions.

I'm off to find more videos for my Scrappyman for this week.  I'm really hoping this all works out as we plan!!!

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.....