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!

The Good, the Bad, and the Worrisome

****DISCLAIMER***** BEWARE OF 'CRAPPY' CONVERSATIONS!

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....