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....

Checkups for Sax and baby

Haven't posted in a while, but fortunately there hadn't been anything to post about!!  Saxon's checkup 3 months ago was good, with the exception of him needing to gain weight.

Yesterday we were back in Rochester for another 3 month checkup.  Unfortunately this appointment wasn't all we had hoped it would be.  Our first appt was with x-ray.  Of course Daddy had to take him since Mama can't go in there with the little one on the way!!  Sax did NOT want anything to do with the x-ray - he screamed and fought Daddy enough that he had red spots under and around his eyes.  As soon as he was done with that, it was on to see Vicki and Dr Henry.  Normally we would be seeing Dr P, but he is out on medical leave.  He should (hopefully) be back sometime in Oct, but they're not positive.

Sax's weight is at 14.4 kg, up only .1 from his last Rochester visit, but up .4 from his 3 year checkup here in Albert Lea.  Again we were told to fatten him up!!  (We figured that one is a given.)  He fought the throat culture like crazy too, when he had been doing them so well.  Dr Henry pulled up Sax's x-rays when Vicki was done with him, and the films didn't look too well.  She pointed out how there was more infiltration in the upper lobes of his lungs and along his heart line.  (For now we are upping Sax's CPT to 3x per day and adding in 5 minutes of manual CPT on each side for those upper lobes.  The way his vest fits, the upper lobes are where the straps are, so there isn't as much compression in that area.  Hopefully this will work!!)  She said there was a spot on the lower part of one of his lungs that she was concerned about.  Dr Henry said the spot is either a dense clogging of mucus, or could also be a spot where part of his lung has collapsed.   This showed up on the May x-ray also, I guess, but Dr P never mentioned it.  Sounds like for now they are just going to watch it.  Sometime next week we should have the results back from Sax's throat culture.  After discussing the awful effects of Zantac with friends on CysticLife, we've also gotten Dr Henry to give Sax a prescription for Prilosec to see if that will work.

Today Mama and baby had a checkup - 21 weeks, 3 days.  We found that the pocket of blood has not dissipated at all - looks to be about the same size it was before.  Mama is still bleeding.  Baby weighs about 1 lb now, though, is the right size, and the baby's heartbeat is strong.  We weren't to excited to find out the baby still has echogenic bowel.  This could mean either 1) the baby swallowed blood and it's taking a while to digest, or 2) it could be a precursor to meconioum ileus, which would mean the baby would have CF.  If it is meconium ilius, the baby will likely need surgery right after birth.  Of course, the surgery would have to be done in Rochester.  We have told our doctor here, Dr Yahya, that we would like to have the baby in Rochester.  We have already been over to see a high risk specialist there, Dr Rose.  According to Dr Rose, the game plan is that we will start steroid injections at 24 weeks to help baby's lungs develop.  Because of the complications I have been happening (which, according to Dr Rose, are rather rare) he said it is quite likely the baby will come before 34 weeks.  He also said they would be following my pregnancy a lot closer and we would have frequent ultrasounds.  I need to call him to see what the plan is.  Albert Lea doesn't seem too willing to follow what the specialist says.  We may end up bypassing Albert Lea altogether depending on what Dr Rose says.

Hopefully we'll find something out soon and get everyone on the same page.  It's hard to manage care when people aren't communicating and the right hand doesn't know what the left is doing!!

Just Another Crazy Month!!

So April 22 was my 30th birthday - and 30 has taken me on one helluva ride so far!!!

Raine and Sax had a new sitter that night, our friends' daughter Ellery, and they absolutely LOVED having her sit for them!!  Yay!!  We stopped in to check on the kids and see how they were getting along, bringing them a big piece of dessert to share (loaded with sugar of course!!)

That weekend was pretty mellow even though Easter was on Sunday.  The Easter Bunny hid baskets in the house for the kids and eggs and toys in the yard.  This year was kites, bubbles, more bubbles (always a huge win for my kids!!), and frisbees.  We knew the Bunny had left 42 eggs, so we were sure to tell Raine that she and her brother each got 21 eggs.  Sax got a 2 minute head start to try to find them... not that it helped at all.  He wasn't sure what he was looking for, but after finding the first egg, he got the idea and he was off!!  The kids put all of their change together into their change jar.  They are saving up for the fair, of course!! Any money they save up is theirs to share and spend come fair time!

Monday Sax had a WIC appointment and recert.  This was a FABULOUS checkup, as his weight has climbed to 14.7 kg, which put him into the 60th percentile - WOOHOO!!  GO SAX!!  This time, along with the PediaSure we usually get, we also got 6 cans of DuoCal - 2 per month.  It seems to be working though!

Wednesday was another HUGE day for us!  We found out Saxon is going to be a big brother!!  I am due to have baby #3 on Dec 25, 2011, so it will be one heck of a Christmas!!  We are not going to find out what we're having, and we're not going to find out if the baby has CF.  There are way too many risks involved with having an amnio, and we'd rather not risk it.

The rest of the week was pretty mellow - until Sunday.  Sax and Raine were playing in the living room with their golf clubs.  Saxon had taken the end off of one of them and put it in his mouth - just long enough to bump into something - OUCH!!  His mouth was bleeding like crazy, so we rushed off to the ER.  What we found out was he gouged under his tongue and put a hole in his soft palate in the back of his throat.  There's really nothing the doc could do for him, so they just sent us home and said it would heal on its own.

We thought that would be the end of it.  Nope.  I ended up taking Sax into Urgent Care on Tuesday.  When he woke up his right eye was matted shut, and it was pretty red most of the day.  I noticed it had been a little goopy on Monday.  Yup, in spite of the fact he's not around a lot of kids during the day, he had gotten pink eye.  The only thing I can think of is that maybe he got it when we were at the grocery store or if Raine brought it home from school with her.

What a fun 2 weeks!! Always waiting to see what happens next!!