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, December 11, 2013

Another Study

I'm glad today is almost over - it's been a busy, crazy day!  We spent most of it in Rochester.  When I say we, I mean me, Daddy, and Sax since Raine had school today.  It was a day of combined appointments.  And, unfortunately, I have no pictures to share from today.

My first appointment was at 7:15 am, so we had to leave home by 5:30.  Sax isn't allowed to come into the ultrasound room, so he had to stay in the waiting room with Daddy.  By the time I came back out, they had already left to go to Sax's first appointment, which was his PFTs at 8 am.  I caught up with the just as they were getting ready to check in.  Sax asked Daddy to go back with him when it was time for the actual test, so I camped out in the waiting room with my crocheting.  Scot said he did really well and was anxious to get the results, which we wouldn't see until Sax's last appointment.

After he finished his PFTs, we headed over to Peds for an appointment with the social worker.  This appointment was scheduled for 8:45 - but she didn't get there until after 9:30.  Wow.  We had requested the appointment with her because we are having some behavioral issues with Saxon.  We're not sure if it has anything to do with the baby on the way, because he never acted out like this when I was pregnant with Baden.  I've been getting worried because tantrums can last up to 2 hours or sometimes more, and sometimes involve him hitting and kicking people or throwing things.  We've both tried a variety of punishments, depending on the type of the tantrum and the behavior.  Nothing has been effective and we're lost as to 1) what else to try and 2) why he is doing this.  The only pattern we've noticed is that he claims to have "not gotten any rest" or he's "tired" and often correlates when he hasn't gone to bed on time the night before.  

We're also concerned that he has started exhibiting some OCD-type behaviors.  It's normal to wash your hands frequently, especially in the winter and especially when you are trying to avoid picking up germs.  Saxon has starting washing his hands up to 10+ times per hour.  If he touches the floor, if he touches his face, if he touches a toy that was outside, if he throws something away - almost any time he touches anything he insists on washing his hands with soap and water.  His poor little hands are getting chapped from it.

We talked through all of Saxon's behaviors and possible solutions.  She is referring us to some of her psychology associates to see what they suggest.  The first possibility is he is having sleep issues that we don't know about.  The other possibility she suggested was anxiety.  She left us to our next appointment while she checked into what to do next.

Sax's appointment with Infectious Disease (aka our CF nurse Vicki) went well - we found out his weight is 2 pounds, his BMI is up, and he's grown 1/2".  He did pretty good getting his throat culture - although Daddy had to hold his hands down so he wouldn't push Vicki away.  Vicki set us up for our next appointments for Saxon.  He'll be due back the beginning of March, so she put an order in for the first week since Baby Bump may be arriving any time in March.  Sax will be doing PFTs and meeting with GI, ENT, Infectious Disease, Pulmonology, and Social Work.

Vicki also told us that they are in the process of becoming an "accredited" CF center.  Currently they treat CF but are not accredited, but that doesn't matter to us.  We were told the only way it really changes is that at his appointment around his birthday, Sax will have all day appointments (which we already do anyway) from about 7:30 am - 2 or 3 pm and will be meeting with a few more specialists than he normally sees now, like Respiratory Therapy and seeing Dietary more frequently.

Dr P was Sax's last appointment.  We got his PFT results - 117%!!  And it's only the 2nd time he's ever done PFTs!  Overall Dr P thinks Sax is looking good, but is concerned about his keratosis.  Saxon and I both suffer the same skin condition where our skin doesn't shed right, which results in dry skin and the appearance of bumps on our arms and legs.  We are trying another kind of lotion to see if that helps, but we may end up vising Dermatology at some point.  

Dr P also decided that, since Sax's sinuses cause so many problems, we are going to put him on a regular regimen of antibiotics to prevent his polyps from becoming infected.  He's on a nasal inhaled steroid to help slow the growth of the polyps, but they don't prevent the infections.  Most of his colds originate from his sinuses.  Sax is currently on Bactrim 2x per day for a cold that he's just coming down from.  For the next 3 months when this round is done, we are going to be doing Bactrim 1x per day, every day, for 2 weeks on then 2 weeks off, to see if that prevents some of these colds and sinus issues.  If he gets sick in spite of this we will try to supplement with Augmentin.

We also decided on a new course of GI treatment.  Miralax and Colace can both cause your body to become dependent on the stimulation to keep bowels regular.  However, magnesium citrate does not have this same side effect.  We've noticed since he's started taking it, Sax has been having a lot less tummy discomfort, he is much more regular, and we've been able to eliminate his other 'bowel maintenance' medications.  Dr P agreed that we could continue with this course of treatment and reevaluate in 3 month.

While we were meeting with him, the social worker came back, consulted with him, and advised 2 current courses to pursue.  1) We were told to read a book on strong-willed children, follow suggestions in the book, and follow up with her in a week and 2) we will be pursuing the sleep study.  She also suggested we have Sax's iron levels checked, so labs were added to our day today.  (He did NOT like having his blood drawn - I could hear him screaming down the hall.)

Next week is going to be a bit of a stressful week.  I will be taking Sax to his appointments by myself, which won't be a problem unless the weather gets bad.  We have a consult on Tuesday.  Wednesday he reports for the sleep study at 7 pm.  One of us has to stay with him, which will be me since Scot will have to go to work in the morning.  I'm a little anxious about it.  I got some information about it and it doesn't sound like fun.  I don't think Sax is going to like have probes glued to him along with the other monitors.  We will be getting done sometime Thursday morning, then we'll have to be back on Friday to get the results.  We were told that there is a possibility that we may be able to get the results on Thursday, which I'm going to ask about at the consult since it would save us some driving!  At least we will know if his sleep is affecting his mood and temper after this!  If not, at least we can cross something off our list!

After Sax was done, I had a checkup with my doc for Baby Bump, which everything is looking good other than my blood sugar being slightly elevated still.  I had to get a new prescription for a glucose meter too since my insurance decided it wasn't going to cover strips for the meter I just got 2 months ago.  They made me switch to a more complicated and more expensive meter.  I swear, those people aren't very bright :/

After we were FINALLY done at the doctor's office, we made a few stops - went to the Girl Scout headquarters (which the store wasn't open, like I figured since it's Wednesday - so I'll have to go back next week), then Toys R Us (got a few Christmas presents even though Sax was with us!!) and Barnes and Noble (they didn't have the book, but Scot got a couple magazines and Sax got a few new things for home school!) 

But me.... I was just glad to get home and relax.... It's been a loong day!

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