Whew! What a week

Were the planets aligned in some weirdo way? Did I tick someone off in a past life? Just wondering because we just finished the craziest week we've had in a very long time! Between me working 10-11 hours a day with more chaos at work than usual, 3 appointments for Mason, and Bill having allergies/a cold, I'm not sure how we survived! Somehow, though, we did and here's a rundown of Mason's appointments.

Lung Doctor: We once again saw are least favorite pulmonologist on Tuesday. He has a habit of making us feel like we're wasting his time a little bit if we have a status quo appointment, but he's the one that told us to make the appointment in the first place. Go figure.... Anyway, Mason continues to do pretty well with his lungs. Both the doctor and his resident were pleased with how good his lungs sound. They reluctantly agreed to no changes in his medication so that he can be in the "best shape possible" for our upcoming vacation. They were pretty clear, though that once we get back (assuming Mason's still doing well), we need to start weaning back down on his steroids. Which brings me to the next appointment...

Endocrinologist (aka hormone doctor): Wednesday was our first visit to the hormone doctor. Mason's pediatrician referred us to help find out what's going on with his growth. We're in a bit of a pickle when it comes to growth - in order for Mason's lungs to grow, he needs to grow taller. In order for him to be able to breathe while waiting for his lungs to grow, he's needed steroids. In order for him to grow taller, he has to be off of the steroids. See our dilemma?

What the endocrinologist told us is pretty complicated, so I'll try to summarize as best as I can. Mason has a new diagnosis -- something called Cushing's Syndrome. (click on the words to learn more about it). He has been on a therapeutic dose of prednisone since October of last year. After using this steroid for about 2 weeks, it is considered chronic use and starts to affect the rest of the body including bone growth. Unfortunately, whatever growth he's lost while he's on the steroids is permanent, but once he gets off of them, he can resume growing. In other words, he's lost about a year's worth of his growth potential. At this point it's not so bad - he might stop growing at 18 instead of 19 - not really a big deal. If Mason were to continue to need steroids for a really long time, though, it would have a really big impact. Our challenge is that once he gets down to a certain level on the prednisone, we will switch him to a less powerful steroid and start the weaning process to get to no steroids. This has to be done over the course of about 6 months and will likely leave Mason feeling not so good while he's weaning. Apparently our natural hormones shut off when we use steroid medications and it takes about 6 months for them to kick back in. In the meantime, adults who go through this describe feeling "jet lagged," nauseous, and generally just not good. We may be in for a rough road, but thankfully, it likely won't affect his lungs. Hopefully, if he continues along this path, we will start the weaning sometime around September.

There was good news in this visit, though. Apparently, chronic steroid use can also lead to decreases in bone density (how strong the bones are), diabetes, and high blood pressure. According to Mason's blood work, he doesn't seem to have any of these. His blood values are all really good, so so far we're avoiding the other potential side effects of the steroids.

GI Surgeon: Friday, we had our 6 month check up with the surgeon who did Mason's reflux and g-tube surgery in December. He was really pleased with how well Mason is doing with the tube and the lack of reflux. He was excited to hear that Mason has been able to burp and felt good about the couple of episodes of spit up. Apparently, both of these are good indicators for long term success. Once the feeding tube goes away and we can't vent his stomach, Mason will be able to burp to release some air in his belly and may even be able to vomit if he drinks too much in college! The things we think about....

All in all, it was a very successful week. We're all exhausted, but reassured that we're doing the right things for now and have a plan to get safely off of the steroids. Its hard to believe that as of last Sunday, Mason has been home from the NICU for a year. At the same time, it seems like a lifetime ago and just a moment ago that we all slept in the same room for the first time. I wonder we'll be thinking about next Father's day???

By the way, we've continued to post more pictures to our Picasa 12 month picture website. Let me know if you need the link again.

The shocking reality of travel...the countdown has begun

Preparations are underway for our 1st official vacation as a family. Lest we jinx ourselves, we are making cancelable plans, but making plans nonetheless For now Mason is still doing great, but we know all too well that can change on a moment's notice, so we are hoping and planning to go, but prepared for a change.

Like a lot of things in our lives over the past year and a half, most things are running smoothly, but we are running into some snags.

We've figured out how many oxygen tanks to bring with us on the drive to Montana and how many we'll need while we're at the reunion. Thankfully, our vendor has a sister location in Missoula that delivers to the location of our reunion; we'll be able to stop in Missoula and exchange what we bring so we have enough for the drive home and don't need to carry a round trip supply. We'll have with us 2 M cylinders (8" diameter, 3 feet tall) and 2 E cylinders (4" diameter, 2 feet tall) for the trip - plus all the other gear we need. The vendor will also be delivering 4 H cylinders (9" diameter, 4 feet tall) and 10 E's. Not sure how we'd get all of the oxygen and other stuff we need in the truck otherwise. Unfortunately, with the timing of the holiday, figuring out delivery has proved to be our biggest challenge. We need it when we get there, but we get there on the holiday and they don't deliver on the holiday. Nothing insurmountable, but logistically challenging just the same.

Last week, I started a list of items that Mason will need on the vacation as well including normal baby stuff plus his medications, feeding pump/bags, suction machine, nebulizer, some sort of way to carry the oxygen around the camp while carrying Mason around the camp, etc. You get the idea.

Thanks to my Mom, we figured out that it would be easier and allow more flexibility if we had 2 play pens to use while we're there. That way, one of us doesn't have to stay in the cabin while Mason's napping. For most kids, its really no big deal if you don't respond right away if the child needs something during a nap, and for Mason, most of the time this is the case. However, if Mason should happen to desaturate a little and the monitor goes off, at that elevation, he could be in serious danger within seconds. So, we have to be right there to respond - no time to run in from the next cabin or the lodge. Great idea, Mom!

Bill had the brilliant idea of using a tackle box (18W x 12D x 7H) to store all of Mason's medications. This way, he'll have all of his syringes, bottles of medication, nebulizers, and formula/lipids in 1 closable location. Less possibility of spillage. Next week, we'll be making sure to re-order all of his meds so that we don't run out of anything while we're there.

I am so glad we did our test run a couple of weeks ago. It let us know what worked and what didn't, how much oxygen we would need at that elevation, what would make things a little easier while we're on our trip, and simply that it was possible! I have never missed one of our reunions at Legendary Lodge and I really don't want to miss this one. With a little more prayer, a little more luck, and a lot more planning, hopefully we'll be able to make it!