This is Saxon, our energetic little man who was diagnosed with Cystic Fibrosis when he was a week old. We gathered together many friends and family members and created Strides for Sax. Our mission is to raise money and create awareness for the Cystic Fibrosis Foundation to find a cure for cf. This is all about Sax and our team's efforts for the cause. As of the creation of this blog, Saxon is 21 months old, has been hospitalized several times for pneumonia, and had undergone 3 surgeries since his first birthday.

Thursday, November 25, 2010

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!!

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