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.

Wednesday, September 18, 2013

The Good, the Bad, and the Worrisome


Today was a looooonnngggg - and stressful - day!  Sax had CF clinic - his quarterly checkup.  We also took Opa over because he had some appointments.  Made sense to schedule Sax's appointments for the same day since we'd be there anyway, so it would save us a trip over there.  Because of the early start, the kids gave up their room to Opa and they camped out in the living room.

Opa's first appointment was at 7:30 am, so my plan was to be up around 5 or 5:15, have some breakfast (and a bunch of coffee!!) and be on the road by 6.  The reality was that I woke up about 4:15, snuggled up to my husband, and tried to go back to sleep.  Then I worried and worried that if I did fall back asleep, I would sleep right through my alarm (yes, it's happened before - more than once.)  So, 4:30 am, I was up, out of bed, with my coffee going.  About 5:30 am I decided to finally wake Saxon up and was rewarded to a kick in the jaw.  What a great way to start the day - or not!

The trip over was uneventful.  We checked Opa in for his appointment and headed to Gonda for Sax's very first PFTs (pulmonary function tests.)  At our clinic kids don't start PFTs until the age of 5, and our CF nurses said they are only 'practice' for the first year and don't actually count until age 6.  I understand why after watching Sax trying.  His biggest problem was putting his tongue in the way when he was blowing.  Hopefully he'll get better at it as he gets older.

Practicing his PFTs before the nurse got the nose clamp out.
We had a little bit of down time after they gave him some albuterol (inhaler) and waited 15 minutes before the next set of PFTs.  One of the joys of homeschooling is, when you have a clinic day, you still have homework to do!!

Writing his spelling words
We tried to get some homework done off and on during the day. Some attempts went a little better than others.

His last 2 appointments for today were with Dr P and Marcia and Vicki.  We got his PFT results (which I didn't understand, so they had to explain to me.)  His PFTs came in at 103%, which I understand is really good, especially for the first time.  (For those not in the CF world/not familiar, the best way it was explained to me is - for his age group, say he's supposed to be able to blow 1 liter of air per minute.  If he only blows half a liter, that would be 50%.  If he blows a whole liter, it would be 100%.)

It was very exciting to share our big new with Dr P that we are expecting again in the spring.  I told him I was upset about a conversation with Sax's primary care doctor who, in no uncertain terms, told me that having another baby is not in the baby's best interest because of the complications I had with Baden and his eventual passing.  I had never even told Sax's other doctor I was pregnant, so I don't know how he knows unless he was checking my chart.  He told me "rumor has it."  Whatever.

Dr P's prognosis on the pregnancy was very optimistic though!  He said, in addition to the VX770 and other medications currently in clinical trials (see the CFTR Modulation), there are many more on the horizon.  He believes that, at some point in my kids' lives, they will be able to live a nearly-symptom-free life even with CF.  It gives me a lot of hope to hear him say this.

Dr P asked about Sax's bowels again because I had mentioned that we were having some constipation issues with him again and was getting worried about all the medications we have to give him to keep things moving.  According to Dr P, it is much more common to have looser stools than having massive constipation.  He asked if it seemed to be affecting Sax's appetite, which it does when he complains of stomach aches severe enough that he doesn't want to eat.  His lack of eating brings us back around to the BMI issues (which is down again because his weight is back to 16.7 kg again.)

And now, the worrisome......

There are a few symptoms that Sax displays that Dr P has been thinking about and reviewing with his nurses, which is what is prompting some testing.  When Saxon sweats, especially in the summer, he takes salt tabs because he seems to sweat a ton of salt out.  However, we rarely see any actual wet sweat on him.  Also, when he has been getting constipated, we noticed it seems to be quite dry in spite of him drinking water and PediaSure all day.  One possibility that came up is his body is reabsorbing liquids too quickly or he's not secreting enough water.  The first step he wants to take is GI testing.

Sax will be going in for a series of GI tests that last 3 days.  This means 2 arrivals at 7:15 am (the first of which will be fasting) and one arrival at 8:15 am.  I'm not sure what all the tests consist of at this point.  I know he can't have any of his stool softeners, laxatives, or any other "bowel" medications.  He has to fast after 8 pm the night before his tests start.  The appointment sheet says he will be served "a breakfast of eggs, bread, and milk that contain a contrast agent" and he will be served a lunch the first day also.  I'm going to say good luck to that because, try as I might, I can't get him to eat eggs!  The order didn't provide any additional information for the following days, so hopefully they'll tell us something when we're there.

After we were done with Dr P, we went back to wait for Opa to finish with his appointments.  He had some skin cancer cut out of his neck, some basal cell carcinoma removed from his face, and a biopsy done on his back.  They are pretty sure they got all of it from his face and neck, but believe that the spot on his back may be melanoma.  It'll be at least a few days before he has the results.  He had to have someone there to drive him home.  I think I will be going with him to his next appointment when he gets his stitches removed because they may need to cut into his back some more, depending on what the biopsy shows.

Around 1130 ish we were done with all ours and Opa's appointments.  I had planned on taking Sax to the Zollman Zoo as a little field trip, but decided against it.  We'd had a long day and Sax was getting crabby.  Instead Opa was going to treat us to lunch, but we were going to wait until we got back to Albert Lea.  Sax loves Yamato - the Japanese steakhouse, so that's what he picked.  We got within a block of the restaurant.... and Sax got carsick :(  He was so upset because that meant we couldn't go to the restaurant.  I didn't want him to get sick at the restaurant.  We ended up going home and ordering Yamato to go.

He dove in to his fried rice and miso soup (can't forget the Yummy sauce!)  I'm going to have to try to make this because he loves it so much.  I had gotten the California roll because it doesn't have raw fish in it, just the imitation crab meat.  He wanted to try it and ended up eating a whole piece.  I'm so glad he's finally trying new things :)  Now if only we could get some of these tummy issues taken care of....

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