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!!!

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.

Results

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

Christmas Eve....

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

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

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

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

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



Spreading reindeer food for Rudolph



The Next Round?

Today was a full - and BUSY - day for house hold!! First a birthday shout out to my mom (Saxy and Raine's Nana).  Raine is in bed and Sax is about to snooze - we just got home from supper with the fam.

Our first appointment was with the ENT.  Dr Cofer was not there today, but our appointment was with one of her CNPs, Stephanie.  We told her about our concerns with Saxon's ears - how he kept putting his fingers into his ears when we do his vest treatments and how he says that his ear hurts.  We told Stephanie about his 2 ear infections back to back.  She looked in his ears and decided we needed to go to another room where they could get the microscope out to look into his ear. 

It was kind of cool.  She looked in his left ear first.  Everything she could see, we could see on the TV screens mounted over the table.  She said she saw some wax in there and did the best to scrape it out.  She was having some trouble looking around the bend in his ear and thought his tube was actually receding into his ear canal, so she called another doctor, one of Cofer's associates, in to take a look.  She didn't get to his right ear before the other doc came in.

Dr Cofer's associate (sorry I don't remember her name) came to look in Saxy's ears.  First she looked in the left one - and saw wax.  And began scraping it out.  And scraped MORE out.  And Sax started crying.  Then screaming as she got further in.  Then she got a probe and a suction hose.  And dug deeper.  His left tube was COMPLETELY clogged.  We watched - and held down our poor crying, screaming little man who was in so much pain, as she cleared the infection (and blood) out of the tube in his ear.  His poor ear canal was so red and swollen -  the two prior 'minor' ear infections he's had (complete with pus coming out of his ear) had really never gone away - which explained why he was pulling at his ear and why his ear was bothering him during vesting!!!  The doctors in Albert Lea said they were going to suction out his ears - and never did...  

After they cleaned his left ear, they put some CiproDex drops in his ear.  We had those for him before, but since Albert Lea hadn't suctioned out his ear, the drops never got to the tube or the infection to clear it out!! (The drops must be working - he VOLUNTARILY takes them - lays on our laps and asks for drops!!)  5 in his left ear 2 times daily for 7 days.  We got by pretty cheap on the drops too!! Instead of having to go to the pharmacy to get another bottle, they gave us the bottle they had used on him.

FINALLY they got around to looking in his right ear.  He'd been rubbing at that one a little, but not as much as the left.  Again, the doctor found a lot of wax.  But she also found that his tube wasn't even in anymore!!  8 months since his surgery and his tube has already come out!!  I have to take him back on Dec 7 for a checkup for his ears (2 weeks from now) to see if the infection actually has cleared up and to discuss IF he is going to need another surgery to reinsert the right tube and possibly replace the left.  Stephanie was going to plan a consult for Dr Cofer with Dr P and Vicki to discuss the CF aspect of the surgery.   This should be fun :-/  But we are under orders of the Mayo ENT department that we are supposed to bypass going to ALMC from now on with ear infections and go straight to Mayo.

I need to get some sleep... I'll finish the update in the am.

Ok, it's 2 days later - busy yesterday getting ready for Thanksgiving and dealing with the nasty weather (freezing rain and sleet!!) plus a bunch of business to take care of before the holiday.

On to the BEST news of the visit - Saxon's weight gain is GREAT!!  He's up to 13.7 kg!!  Here's a little fun number comparison from his last visit there on Aug 13:

Height: 85.3 cm  (27%)
Weight: 11.3 kg  (12%)
BMI: 15.53 (21%)

Stats 11/23/10
Height: 88.0 cm  (30%)
Weight: 13.7 kg (61%)
BMI: 17.69

He has gained about 5.3 pounds in the last 3 months.  The PediaSure is really helping!!  His appetite is starting to come back too!!  SOOOOOOO happy about that (except, of course, he didn't want to eat any of the Thanksgiving goodies!!)  As long as he keeps his weight up, we shouldn't have to worry about a feeding tube or any other food supplements!!  We are supposed to try to get him to eat more red meat and other iron-rich foods, though.  At his August appointment, they noticed his iron levels had dropped a little, and that is still a concern now.  Sax isn't a huge fan of red meat.  He does like pork, though - ham, bacon, pork loin, chops.... and of course, hot dogs.  I have gotten him to eat seafood in the past, but recent attempts have been fruitless.  Daddy has tried giving him tuna, to no avail.  I have to avoid it since I am allergic to it :-(  One of his favorite breakfasts, Maltomeal, has 60% RDA of iron in 3 tbsp, but he eats more than that when I feed him it!!  And I've discovered that raisins, one of his favorite snacks, is also very iron rich!!  Usually when I think iron, I think protein and greens (yeah, no luck with the greens!!) so I've been researching other options.   I always try to feed him a variety of foods, and whether or not he eats it, he's still given a little of whatever we're having!!  Plus a little extra butter, gravy, salt, or whatever else we can add that's full of calories!!  They're going to check his iron levels again in a couple months to see if there is any change.  I told them this didn't surprise me too much, though, since about every other time I donate blood, and when I was pregnant with both kids, I come up mildly anemic.  If his levels don't increase, he'll be put on an iron supplement.

Sax had to have another chest x-ray while we were there - which came back looking fabulous!!  Which means the Vest is doing it's job!! :-)  Dr P did notice a little bloating and asked if Sax has been gassy, which he has.  This lead to poopy discussions, which they have been larger and more frequent, so this lead to a change in his medication.  With his snack he will be getting 3-4 Creon 12, with breakfast and lunch he's to get 4 and with supper, he'll get 5 (unless, of course, he has a huge, fat and calorie laden meal for lunch, like Thanksgiving!!  We gave him a little of everything - turkey, ham, scalloped corn, green bean casserole, stuffing, mashed potatoes, gravy, and bread, with some pumpkin pie and ice cream for dessert! - and we put extra butter on the bread and the potatoes, and topped the turkey, potatoes, and stuffing with lots of gravy!!) 



Rochester skyline from 16th floor of clinic



Another of Rochester skyline - Daddy looking out window



I like butter!!! :-) We're not stopping him!!!



He only actually got HALF at a time - but Oooohhhh he was excited!! "Saxy donut!!"



Hopefully the next couple weeks will be rather uneventful!! I can tell you, we won't be doing any Black Friday shopping!!  Mom and the kiddos will be chilling at the house, and Daddy has to work!!

We have so much to be thankful for this year - so many less hospital stays and surgeries and illnesses in our house.  We really couldn't ask for more, well, other than a cure!!  But here's to being thankful for Good Health!!



Loves his window perch, especially now that the lights are up!!



Happy Thanksgiving everyone!!

Filling in the Blanks - Part Two!!

I left off with Saturday, cuz it just seemed that entry was getting too long... So now to Sunday.  We went to the Cabin on Sunday to hang out with the family..... The Blomquists and the Jensens..... 

The kids had all kinds of fun playing with the water and splashing each other, even though Saxon didn't get to go in the big pool.  Mommy and Daddy didn't bring our suits, so we couldn't go in with him, and we didn't have any ear plugs for him, which he would need since he had the tubes put in his ears

The kids were having water fights in the pool, and jumping in and splashing all of the adults.  The chlorine was a little strong - Raine's eyes were pretty red when she got out of the water, but it was the first swim of the year, so it will balance out...

Since Saxon couldn't go in the big pool, he decided to play in the wading pool (aka the puppy pool - Bruno Blomquist was bathing in the pool...)  That didn't stop him!!  He was splashing and in and out of the pool, and playing with water guns.  His favorite was to sit on Mommy or Daddy's lap and try to shoot the water gun - but he would shoot himself or us in the face!!  His fingers wouldn't work right to aim the gun away from himself - he had to use his thumb.  But he was having a lot of fun!  This was the first of what I'm sure are going to be MANY weekends at the cabin... and the kids just LOVE playing with their cousins.  It's so nice they have kids close to their own ages to play with!!!  And it gives me and Daddy a chance to sit back and just watch for a while.

It stormed Sunday afternoon for a while and then again Sunday night.  We got home about 9pm, then the power went out.  It stayed out for about an hour and a half, so we couldn't do Saxon's nebby without power!! By the time the power came back on, everyone was asleep or about to sleep, so we just did an extra thumping in the morning.

Monday was a mellow day... we pretty much just hung out around the house, did a little yard work, and went fishing.  Raine had baseball practice so we didn't stay fishing too long... She has her first baseball game tonight.  Can't wait!!

Yesterday, Tuesday, I got a call from Rochester.  Saxon has an appointment on Thursday for a GI consult.  I was concerned, since I had not heard anything back from Dr P.  The person who called didn't know what the results were from the x-ray, so they had Vicki give us a call.  She said the x-rays were fine, there wasn't any blockage, but that's why they were concerned about the weight loss and decreased appetite.  It's possible that it's just normal 2 year old behavior, but we would prefer to be on the safe side.  They said a GI specialist may find something that they missed since the tummy is their area of specialty.  We have to be at Mayo 9 at 745 tomorrow morning, then we have an appointment with a dietician afterwards.  Hopefully we should be done by 10, but ya never know!! I won't hold my breath on that!!

Filling in the Blanks

In spite of my efforts, I have not been keeping up with the blog quite as much as I planned on!! So here it is on Tuesday, and I'm going to backtrack to Friday. Or Thursday, actually, would be better. And we'll go from there....


So on Thursday night was our Strides for Sax team meeting. We discussed the parade a little more, still brainstorming on what we want to do exactly for our float. Then we got to the nitty gritty on the Poker Run/Car Cruise.


We will be holding our Poker Run on Aug. 28th, 2010.


This will be open to anyone 18 years of age or older.


It's open to cars, trucks, motorcycles, anything with or without wheels that can make the trek!!


The route will begin and end at the Green Mill in Albert Lea. The stops will be, in this order,
1) the Alden American Legion, 2) Wildcats of Wells, 3) TB3's of Freeborn, 4) Hartland U, and 5) Bend in the Road of Manchester.


Each tally sheet played will draw a total of 6 cards, discarding one, and will based on the best 5 card hand.



Any player can have more than one tally sheet. The tally sheet must be presented before drawing a card.



There are 4 categories for prizes: 1) High 5 card hand, 2) Low 5 card hand, 3) Most CF Spirit (most purple), 4) Early Registration.


All tally sheets MUST be turned in by 6 pm. Prizes will be awarded at 7 pm. MUST be present to win. There will also be raffle style drawings for smaller prizes.





Registration forms will be available at all Poker Run stops or by emailing mindy_cff@yahoo.com. Payments can be made by cash or check payable to "Strides for Sax." Payment must be turned in with the completed and signed registration form.


Live registration will begin at 11 am at the Green Mill.


All participants must sign a liability waiver.




Completed forms can be mailed to Strides for Sax - Poker Run, 1211 Frank Ave, Albert Lea, MN 56007.




So, email or pick up a form and we hope to see you there!!


And that was Thursday.


Friday, Saxon and I made the trip to Mayo by ourselves. We had to be there by 9 am for x-rays. Daddy had to take Raine to school since Sax and I left at 715 to make the appt. We got there early, so we got in to the x-ray early. Our next appointment with Dr Pianosi was at 11.  We had a few hours to kill, so we wandered down to the subway, got some breakfast, then wandered around the clinic and subways for about an hour.  That got boring, so we went back up to 16th and watched Finding Nemo.

At 10:30 we were called back to talk to the social worker.  She was checking to see how we were doing as far as insurance and everything was going.  I told her I applied for MA and MNCare for the kids, since we haven't had insurance since I left my job.  She was going to call Freeborn County and talk to our local case worker about how long our application was going to take, especially since Saxon's medications are so expensive.  She also gave Saxon a new stuffed puppy.  He usually gets a new toy when he goes over there...

Dr. P was running late.  Vicki was gone, so we didn't see her.  I turned on a movie in the exam room (they have Video on Demand there!!) and we started watching Mosters vs. Aliens.  We didn't get to see the whole movie, but we saw most of it.  It was after 12 before Dr. P came in.  We looked at Saxon's chest x-rays - they were good and more clear than at his last appointment.  They hadn't gotten a weight on him, so Dr P took him to weigh him.  He went from 12.5 kg down to 12.1 kg since his checkup 2 weeks ago with the ENT.  I told Dr P that Sax hasn't has as many dirty diaper - he's having plenty of wet ones, though.  and he doesn't seem to have much of an appetite.  Dr P was concerned.  He ordered an abdominal x-ray before we left.  He wanted to make sure there wasn't any blockage... we wouldn't get the results right away....

So that pretty much summed up our Friday.... Saturday wasn't much of anything - just hung out at home and did some cleaning and gardening....