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.

Birthday Boy

Happy Birthday Baby T

What a beautiful day for our little Mason's birthday! Absolutely perfect skies with warm sunshine filling every crevice available and little Mason's happy face filling our hearts. It has been a year filled lows and highs and each day has had a little bit of a challenge. From normal baby things like learning to crawl to a heart baby leaving his g-tube behind. There isn't a better place we could be and as always we thank God for giving us so many things to be thankful for. Here's to everyone who has helped us get our little boy through that tough first year and to those who will be helping us get through all those in the future-may your heart be filled with the kind of peace and love we have been blessed to experience.

To my Mason, your are perfection in each and every form, with an innocence found here on earth only as a child. Your rebuilt heart a perfect little machine able to work in a way no one could imagine. To live each day with you is to know the great and glorious power of God, for it is he who has given you life, given the doctors and nurses the knowledge to help fix your heart and for everyone you encounter to be filled with happiness whenever they meet you.

Today is one year from the beginning of our journey, little one. With faith and love many more are to come. We all love you so much!! Happy Birthday Big Boy!!!