Another Diagnosis? We Hope Not

We've had a difficult last few days. Unfortunately, Mason hasn't been tolerating his daytime feedings very well for a while and it has been worse since the button was placed on Tuesday. He appears to be quite painful after we feed him and gets quite upset. His heart rate races, his oxygen need goes up some, he gets really fussy, and he drips sweat! We're not really sure why this is happening, but are running with a few theories (the most likely is #2):

1. He's still really sore from the tubes being exchanged
2. We've changed a bunch of things in the last 3 weeks and this is the straw that broke the camel's back so to speak (stopped 1 medication that helps move things through his digestive tract - Reglan, decreased an anti-acid medication - Prevacid, changed from milk based to water based formula - yes, the freezer is finally empty, exchanged stomach tubes, and increased the amount we've been feeding him - we're up to over 3 ounces in about 20 minutes now, not a lot for a regular kid, but a ton for Mason). Seems like a lot of changes in a short amount of time for him.
3. He has a rare side effect of the surgery called Dumping Syndrome (the stomach empties way too fast and the intestines cannot handle the volume and become extremely painful)

So, in response to the continued and worsened symptoms, we've re-started and increased a few of the medications. We did notice some improvement after increasing the anti-acid medication, but it appears that things are a little worse today after starting the medication that moves things through the digestive tract. We'll continue to monitor and hopefully figure out what is going on sooner than later.

On a much more positive note, Mason's oxygen need has been pretty steady over the last few weeks (other than the brief time we have to turn it up after his feedings). We have been able to decrease his steroid dose by 1/2 without any change in his need. It's wonderful to see his oxygen need staying so stable! We are very encouraged by this and eager to see his lung doctor on Tuesday to see what he thinks.

We have another round of appointments coming up in the next few weeks (RSV shot Monday, lung doctor and speech pathologist on Tuesday, and orthopedist on the following Friday). Hopefully all will have positive results!

Mic-Key (M-o-u-s-e) - Well, That's Partly Right

Mason finally transitioned from the g-tube hanging from his side to his new "button" (called a Mic-Key)! We took him in to the see the surgeon today who was very impressed with how his g-tube hole and site looked. He said normally, the hole gets bigger between the time of surgery and the time that the button is placed, but we all did such a great job avoiding pulling on the tube that it actually got smaller. The good part about that is there will likely be a smaller scar, the bad part was that it was a little difficult to put the button tube in. I'll spare everyone the gory details of pulling one tube out and putting another one in, but suffice it to say, when a hole straight to the stomach is left open, a lot of stuff comes out. Thankfully, after the button was placed, no more leakage. This button basically looks like a very small disc on his skin and stands up about a centimeter or so. Mason was a little fussy tonight from having a tube pulled out and another placed, but generally is tolerating the button well. Mommy and Daddy are really happy to have 1 less tube hanging from Mason!

On another note, overall the move to Mason's own room has gone smoothly, too. Most of the time he's able to soothe himself back to sleep if he wakes up or else sleeps through the night. We are truly lucky!

Mason's A Big Boy Now!

It had to happen sometime, and tonight just happened to be the night. I mean, we can't still be doing this when Mason's a teenager. And even though I'm used to it and am getting attached to it, I know it couldn't last forever.

Yes, it's true, Mason moved into his own room tonight. He has finally become stable enough that he doesn't desaturate much anymore. He's eating well with the feeding tube through the night, and hasn't pulled on his tube in a long time.

So, he graduated! We cleaned his room and moved his crib and changing table in earlier this evening. I've forgotten how big our room is (now that 2 fairly large pieces of furniture, 2 mondo tanks of oxygen, and a bunch of medical supplies are out).

I think I'm the only one having a hard time with it. Mason is sleeping just fine, Bill's excited to get a good night's sleep, and I'm having a hard time letting go. But, I know it's best for everyone's sanity. I'm not sure if I'll get more sleep tonight than with Mason in our room, but here's hoping! And really, it's not like our house is that big; I think it's just as far to go around the bed to his crib in our room as it is to go into his room.

Wish us (really, I mean me) luck!!

Happy 10 Month Birthday, Mason

Happy Birthday, Aunt Liz!!

Here we are at month 10, just 2 months to go to Mason's 1st Birthday. Already I've been thinking about how he will be doing at that time. I wonder if he'll be able to eat some cake, I wonder if he'll still be on steroids. Who knows, anything is possible at this point! For the first time since the 7 month update, I'm happy to report we have not been in the hospital in the last month!!! We are so happy to have remained home since Mason's surgery!!!

We also had a fantastic Christmas with family and friends. Thank you to everyone for your generosity!

Lungs/Heart: Mason has seen some ups and some downs this month and now that the month has come to an end, he is just a little above where he started when he came home from the hospital. We tried to make some changes with his diuretics and ended up causing him to retain a little too much fluid, which in turn caused his oxygen need to go up quite a bit. Luckily, we have a great pediatrician who listens to our concerns and thoughts on treatment. He was able to give Mason some Lasix (heavy duty diuretic) and increase his dosage of regular diuretics and Mason has done pretty well. So, we've decided to mess with the steroids this time and today decreased the amount a little bit. If all goes well over the next week or so, we'll decrease again. If not, we'll either stay at the same level or go back to his dosage from yesterday. Pray that this goes well; I love the chubby cheeks, but would like to see Mason's chubby cheeks, not the cheeks on 'roids!

Throughout all of this, Mason's pediatrician has been in contact with his lung doctor and we have a follow up with him at the beginning of next month.

Eating: Eating has continued to improve, slowly, but steadily. Mason is now up to 3 ounces every 3 hours or so during the day and 1 1/2 ounces per hour continuously at night. We figured out that he would sleep through the night if we decreased the hourly amount during the night. We are so excited to get those hours of sleep!!! We were also able to stop one of Mason's medications and decrease the amount of another one (we might even stop the 2nd one completely next week!). These were both helping his digestion, but since the surgery was so successful, he doesn't need them. We were supposed to have the tube changed out for a "button" (a portal that sets off of his stomach by about a centimeter or so), but had to postpone the appointment because the surgeon had to do another kiddo's surgery. We're set for a rescheduled appointment next Tuesday. From what we hear, the button is fairly easy to use, but like all things in Mason's life, we'll have to get used to the change.

Weight: Mason has continued to grow at a very good rate. He is now on the weight growth chart for his adjusted age and we couldn't be more proud. He is still a little slow on gaining length, but this should come with time. Today, Bill took Mason in for a weight check and the little chunk weighed in at 16 lb. 11 oz. He is gaining about 1/2 an ounce per day which is a good steady weight gain. He is also about 25 3/4 inches long. With that chin, he's got a lot of skin to grow into!

Development: Mason has gained a lot of strength over the last month. He is now able to sit without support on just about any surface and he is starting to work on supporting himself on hands and knees (with our help). The PT continues to be very impressed with his abilities. He still lags behind in the things that take strength and endurance (not crawling, not propping himself up when on his stomach, not standing/pulling to stand), but he does great with the other stuff that doesn't require that strength or endurance. He does show good signs that the things that are behind will come - -Mason just needs to get a little stronger medically for these to happen. We are encouraged that eventually he will catch up and he will get all of the developmental skills he needs.

We have been so blessed this month and are so eager for things to continue to improve. We know there will be peaks and valleys, but hopefully things will continue to get better! We hope this finds everyone doing well. Thank you for all of your support and prayers!

Love,Christi, Bill, and Mason

Will Mommy Never Learn?

Someday, I will realize that saying things out loud or putting them in print sometimes, no many times, jinxes them.

Mason had been doing so well with his breathing and his eating. Unfortunately, over the last few days this has changed some. After his appointment with the doctor on Wednesday in which he got his 2nd round of immunizations, we changed some medications, and things started to go downhill. Originally we thought that it was just Mason's reaction to the immunizations, but today when his breathing and oxygen need were a little worse again, not better, we decided to reach out to our doctor. So, Mason had some lab tests today and ended up with a shot of Lasix (a pretty powerful diuretic). So far, he's doing a little better with his oxygen need and breathing, but the biggest change we've seen is that smile coming back. It was clear after a nap when we came home that Mason was feeling better. He woke up smiling and happy, a very welcome sight.

Hopefully this improvement will continue and Mason will go back to doing well and staying stable. Can't wait for the roller coaster to slow down.

No News is Good News

Many have asked why we haven't updated the blog in a while, and I'm happy to say for the first time because our lives have been fairly uneventful! Since Mason came home from the hospital on Dec. 14th, we've basically been puttering along.

We had a fantastic Christmas amidst all the snow and were so excited to see Christmas through Mason's eyes. We were surprised at how engaged he was and how excited he was with opening his presents (and there were many!!). Thank you to everyone! I'm not sure whether Mason was more excited about eating the wrapping paper or the present itself, but everything had to be tasted first. It was quite funny.

Shortly after Christmas we did have a little glitch when Mommy mistook the balloon port on the feeding tube for a medication port and we (read that I) ended up deflating the balloon that holds the feeding tube in place. After a couple of days of leaking milk out of the hole, we did a little internet searching and Daddy came to the rescue. He figured out my error and we got it fixed right up. No harm, no foul. Lessons learned. And all those other cliche's.

New Year's brought...well, really nothing. I was in bed around 11 and Bill watched a movie until needing to give Mason his midnight medications -- our nightly routine around here. Are we old or what?? Maybe next year.....

This month we do have quite a few follow up appointments with the pediatrician, the GI doctor, the speech pathologist, the physical therapist, the surgeon, and perhaps the lung and heart doctors. Mason seems to be doing well and even has really good days that we haven't seen in a really long time. We are so thankful that the surgery went well and that he continues to be so happy.