The Big 2

Our beautiful, little boy is pure heaven on earth and just hit another milestone-he's 2 years old and doing great.  This last Saturday we all traveled to Albuquerque for the LPCH-UNM family picnic.  It's filled with little ones who have traveled to Stanford from NM for heart surgeries.  What a great thing to see so many children given a chance to grow and experience this wonderful world.  It truly is a great time to be alive.

Mexico

So the kids are in Mexico-including little Mason! The kids, my Mom and I left to Monterrey on June 17th and I stayed a few days to make sure Mason would be ok.  I really didn't think he would have any problems but it made me feel better going & I love going to Mexico.

My aunt, Magdalena, who is a retired pediatric charge nurse, has taken Mason into one of her Dr. friend's clinics to check his 02.  He was between 88 & 89%, which is fabulous!  The lower elevation seems to have made a difference in increasing his 02 sats.

Ernie finds it so important to have the kids learn Spanish that he is all for having them go each summer as I did when I was young.  The food, the culture, the buildings, the landscape are all so inviting.  Then you have the norm-like the Home Depots, the Chile's, the KFC's delivered to your door, if you please.  It is simply the best of both worlds and I wouldn't mind living there. 

In the meantime, Ernie & I are basically like newlyweds, just the two of us.  Sure, Michael is here but we just take off whenever we want-no real schedules, no shuffling kids, no medications to give, no listening to arguments. While we truly love them all, we are enjoying that new found freedom. Ernie flew us to Las Vegas for the 4th of July holiday.  Although I am still apprehensive about flying, it was great to be there in just a mere 3 hours or so.  We staked out a little piece of concrete in front of Cesars and watched their beautiful fireworks display.  Too bad the kids weren't here to see that-they would have loved it.

Just a week before the kids left we all drove to Disneyland and Vegas.  I think it was a perfect road trip but my other half didn't seem to think the same.  The kids actually did wonderfully while watching their DVDs but for Ernie, he felt the road trip was too long.  I have to remind him that he has to find the good in everything and to me it was great that we had a new vehicle and that we were able to take the time to take the kids on a wonderful adventure.  The most enjoyable part of Disney is that we were able to do almost all the rides in one day.  Sounds impossible, but I described Mason's condition and we were able to get a Guest Assistance Pass.  This allowed our entire party to be placed at the front of the line and we waited only a few minutes for the majority of the rides.  It was perfect as Mason loved each and every ride and didn't get overheated waiting in the sun.  We made some time to visit the ocean but with it's frigid waters, Mason didn't really want to get in for long.  His one venture in the water caused his lips and fingers to turn purple and his body to shiver.  He was such a die hard as he didn't want to leave and was content to dig in the sand with Jaylen. 

I just have to keep saying it in almost every post.. God is so good.

Ordinary Day

Mason had a simple cardiology visit on April 27th!  A little crying because of the nurse and her probing equipment but he looked so darn good that the cardiologist felt he was doing well enough to leave things alone.  No changes in meds, no echo.  From our last visit, they had scheduled to have an echo done up at UNM on this visit, but apparently we will be waiting to have it done in October instead.  God is so good! 

We flew up to Albuquerque in the morning and since the visit was so short we stayed until the evening and flew back home the same day.  While passing near T or C the full moon lit up the lake and the glow just lit the way.  It was like a little mirror on the ground relfecting the mountains and moon.  We did have a a little distraction though. About 45 minutes in the air Mason got upset and threw up!  It was just what he needed as shortly after he fell fast asleep.  It wouldn't be our lives if something a little out of the "ordinary" didn't happen though.  I'm just so thankful for it all.

Time

I've just realized that I have neglected Mason's blog and that is one of the cardinal sins of blogging.  "They" say that in order to have a good blog, you have to commit to posting something often.  As most of us know, that isn't so easy when you have so many kids, work and everything else going.

Time seems to find you when you are in a hospital room awaiting the next test, poke, cry, good news, bad news and everything else that comes along.  In the meantime, we are busy leading our lives with what seems not enough time for everything we are trying to do.  It's funny how when you are in the hospital the world just goes on without you and that includes your family.  Everyone else is busy still going to school, doing homework, dealing with the next "crisis", having a great time and even sometimes a bad time.  So how is it that all that doesn't seem to exist when you are in the hospital and all you have is time?

In business, one of the main themes you hear when someone leaves a job that they thought only they could do, is that no one is irreplaceable.  There is always someone to come along that can do your job and maybe even do it better than you did.  There is nothing like hearing, "Oh yeah, we found your replacement and they are doing great!" to set you in your place. I think that theme of "replaceability" translates into aspects of every day life.  As a Mom or Dad, someone else could do your job, maybe not the same, maybe better.  In time, you can be replaced and perhaps even dare I say, forgotten.  So what do you do with the time you are here?  What do you do with the time you spend with your kids?  With your parents?  With your friends?   I think it's not all about how much time you spend with them that makes the most impact but the quality of the time. I think it's easy to forget that when you are running around trying to get it all done. 

For me, reality check comes when it's time for Mason's next cardiology appointment and we are hoping for the best outcome.  All I am hoping to hear is that he has more time- more time before his next scheduled appointment, more time before his next surgery and more time without new meds.  His next appointment is April 27th and I'll be praying to God for more time, and if he gives it to us, I'll be praying that He gives us the smarts to make the most of it!

Gotta love it!

So our little trek to Las Cruces for Mason's echo on January 14th didn't really lead to much info at least not how I see it.  We were about 20 minutes late to our appointment and the echo tech had a limited amount of time to work with Mason.  Mason didn't seem to care that things were time constrained as he didn't want to be there to begin with.  As soon as the tech/nurse began trying to do his echo he started crying and promptly threw up on her.  He wanted no part of her touching his chest.  I attribute this to the fact that he has been getting his monthly Synagis shots, one in each leg/muscular, and he is now acting out against all nurses.  So after she got cleaned up, we tried to have him sit still and finish up but we weren't the star pupil for the day.

 As a result of his fitfullness they didn't get exactly the best view of his heart but from what Dr. Goens could tell things looked pretty good.  His function was good, his aortic arch was open/not constricted but she did see that his right ventricle is moderely hypertrophied.  This means there is some thickening of the right ventricle.  As explained to us, this might just be to the fact that when the Norwood was done and subsequently the Glenn his heart has changed in size.  The Norwood requires the ventricle to enlarge more/do more work and the Glenn less.  I can't really explain it but it makes sense to me.  From what Dr. Hanley told us before about the heart remodeling, this sounds like what it could be.  The tricuspid regurgitation was increased but was also attributed to his crying. As for his weight, he is 28 pounds which is wonderful as this places him in the 50th percentile.  He was previously in the 25th percentile so he has made enormous progress without the g tube.  We will continue to be off the digoxin and will have another echo in April to determine if this is still the best course of action. 

Mason at his Mountain View Hospital, cardiology clinic.

A few days later Mason must have recalled his experience as he used the sat monitor to give himself and echo!  I think next time we will just ask the nurse for the probe and let him go at it himself.  Just gotta love it all!!!

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'Tis the season to be thankful

Well, it was this date last year that we were getting ready to travel to Palo Alto, CA for Mason's Glenn surgery. That was to be the "easy" surgery. As if any open heart surgery could be easy, but as you know it turned out to be the worst one for our little Mason. Thankfully, we had some divine intervention and he pulled through. Today, we live almost normal lives, trying to keep the gravity of his condition in the depths of our minds. Whenever I tap into those thoughts I turn teary eyed and can't help but imagine the worst. It usually doesn't happen unless I have read someone else's blog. Someone whos child has not been so lucky and is still in the hospital, someone's child whose heart is starting to fail and they now await a transplant or someone's child whose passed. It's always someone. It just doesn't seem right that it has to be a little child with so much to give.

Giving is certainly what Mason has done. He has given us hope, courage, strength, a stronger faith in God and more love than any human being deserves. We are so thankful for these days!

Uneventful visit-or should I say for me...

On October 21 Mason, Daddy and I traveled to Albuquerque to visit with Mason's cardiologist, Dr. Goens and visit with the Pediatric Surgeon, Dr. Lemon. The good news was that Dr. Goens believed that Mason's heart looked good enough to get rid of the Digoxin and simply increase his Enalapril. The reason being that the Digoxin was used to increase the forcefulness of his ventricle and was especially needed after December's life-threatening events. His heart has recovered enough to hopefully keep him off of the Digoxin for some time. As Dr. Goens explained to me, the goal is to keep Mason's own heart functioning as well as possible for as long as possible. We wouldn't want to wear it out further by keeping his ventricle pumping more forcefully with the Digoxin. She did comment that she thought perhaps there was a slight decrease in function since his last echo but that was subjective. Give it to someone else to read and they might not see the same thing. So to us, all looked pretty darn good.

Now, his peds surgery visit was not as nice. After discussion and evaluation from the med student, Dr. Lemon and Dr. Lemon's nurse it was decided that we try the silver nitrate first in order to hopefully avoid surgery to close his still, leaking fistula. (g-tube site) We had to hold Mason down while the nurse pushed in the swab that contained the silver nitrate into his g-tube fistula. Not a good thing. She asked the med student to hold his legs down while I took his arms. The nurse was apparently a little frustrated with the student's inability to hold his little legs down. She commented to the student, "Now you see, he has been through things like this before, he knows what he is doing and how to move his legs, you have to hold them down!" Of course, she took over the leg part and held him down and applied the silver nitrate at the same time. Horrible for Mason but worse for Ernie and I when we had to do it at home on Saturday. The wonderful news is that it looks like it might have worked! I pray that his fistula closes and we can avoid surgery. It would only be a minor surgery, but I am so afraid of him undergoing anesthesia without a cardiac anthesiologist on hand. Maybe I don't understand the "minimal" risks but I would feel better having any surgery done on Mason out of state! All that being said, look what happened in December at Stanford, of all places. We'll just have to give to God, I know he is taking care of us. So all in all, the visit was "uneventful" and deemed a success! Thank you God!

I almost forgot to metion, Mason took a couple of steps on his own, two times, both while Billy and Marsie were over at the house. I guess he was just showing off! We know he'll be walking in no time. Now then, we'll really have something to report.