Getting to the heart of the matter

Cardio thoracic surgeon's appointment yesterday. Wait 1 1/2 hours (2 if you count waiting to see the surgery scheduler)

Mason's surgeon will be Dr L. Bailey. World renown and highly recommended. He seemed very approachable and had a calming manner about him (is it ageism that the fact that he's two years younger than my mother makes me pause a bit?).



Most of the echo results are normal. The repair of the interrupted aorta and the closure of the VSD were successful. The patch they place to close the VSD has not bulged. Instead it seems that part of the septum is malaligned. This is not a failure of the previous surgery rather another issue with Mason's anatomy.

The exact findings on the echo are:

Severe infundibular/conoseptal malalignment, with subaortic obstruction. Mild left ventricular hypertropy.

What the heck does that mean?

Well in short the infundibular/conoseptal part (the red arrow) is bulging out and causing the subaortic obstruction ,or narrowing of the aorta, (the yellow arrow). With the aorta being so narrow it's causing the blood to back up and the pressure from this back up is causing the left ventricle to enlarge (green arrow).

Left untreated this will eventually cause the heart to fail but with surgery they plan on dissecting the aorta and removing the extra tissue that is bulging out.


Dr Bailey tells us this is a very successful surgery and he sees no reason for it to fail or cause any major complications. He is afraid however, with Masons Laryngomalacia(redundant tissue around his vocal cords) and respiratory difficulties because of this might cause another extended hospital stay. He also already brought up the possibility of Mason needing a trach.


The kicker......

we face the very real possibility of this re-occurring and Mason needing the same surgery again in the future. We will just have to have an echo done every 6 months and hope that it doesn't.

I know. Talk about gut check. I felt like I was going to throw up right there on that world famous heart Dr.

So surgery day is set for August 26th. We have a month to prepare for the unprepareable

Our heart is on the line again. There is nothing more I can say.

There is nothing more to say I guess.




Mason's first haircut. Sorry for the lousy pictures but I was by myself so I was shooting with the point and shoot camera one handed!

This boy's hair grows fast. It was over his ears and getting down to his eyes! See how well he is sitting? He's getting better and better everyday (even if it's only for short amounts of time)



Yeah so it was going really well terrible. So I had to improvise.

and I did the rest of the haircut with Mason in the bouncy seat (yes do I rule!)

and Ta Da! Not too bad if I do say so myself.

Surgeon appointment update

So after two hours of phone calls yesterday I was able to get us an appointment with the cardio thoracic surgeon on Monday the 25th. The conversation went something like this...

Me: I need to make an appointment for my son to see the surgeon..
Person: The next available apt we have is for August blah blah blah
Me: We the cardiologist feels Mason needed to see the Dr asap because of his echo results
Person: ((sigh)) OK let me put you on hold and go look at the echo results
Me: wait......
Person: Oh OK well we need to get you in sooner than that. Hold on and let me get you the supervisor.
Me: wait...
Supervisor: Well the next available apt we have August blah blah blah
Me: no see echo
Supervisor: hold on while I look at echo
Me: wait....
supervisor: OK we are going to need to get you a sooner appointment hold on while I get the nurse
Me: wait....
Nurse: blah blah August
Me: echo
Nurse: hold on
Me: wait....
Nurse: OK I need to talk to the Dr
Me: wait....

So finally after going through 4 people I was able to get them to make a time for us Monday morning. In fact they just created an appointment for us. I'm so thankful that they are bending over backwards to get Mason seen but my stomach is in knots knowing that Mason's echo results were bad enough for us to get this kind of attention.

The good news is that's George's day off so he is going to be able to be at the appointment without using up any of his vacation days which we need to save up for surgery.

So Monday we will have a better idea of what is wrong and when surgery will be. Till then we wait and try not to go crazy.

Since post with pictures are so much more interesting...

Mason "enjoying" a little sun out in our backyard

and Pierce, because he's just so dang cute and an amazing big brother

and in other interesting news this morning Mason was just crying and crying and seemed to be in pain. Usually when that happens it's because he's having gas pains but no matter what I did to help him he just kept crying. Finally as I went to check his diaper (for the 3rd time) I noticed his Mic-key button was hanging half out of his stomach.

Holy shiitake mushrooms!

Now if your not the parent of a G-tube feed baby then let me explain to you that the G-tube(feeding tube...see black arrow in picture above) is held in by a small balloon filled with saline. At anytime this balloon can get a leak, deflate, or worst of all just be pulled out. They warn you when you get the G-tube that this is not a someday might happen thing. It's a someday it WILL happen thing (as I'm sure all my tubie families are all too aware) and when it does you have about an hour to get to the hospital before the stoma closes up and you have a BIG problem!

So they supply you with a spare so WHEN (not if) the tube comes out you can bring it with you when you go to the nearest ER or GI Dr to get it re-inserted.

Now I watched them when they changed Mason's tube last month (which took 7 minuets and cost us $150.00 but cost the insurance company a ton more than that) and I realized it's not a big deal. Not that unlike putting in a Foley (urinary catheter) which I have done 100's of times as a nurse .


So I took a deep breath, deflated the balloon, pulled the old one out. Checked the new one to make sure it worked and popped it right in. Took me a total of 3 minuets tops and it saved us a trip to the Dr's and at least a $150 bucks!

Mason was unfazed he just sighed and rolled over an went to sleep.

but I was pretty impressed with myself.

I am such a badass!

and since I'm usally the one behind the camera here's a picture of the boys and I on Mother's Day.

Yesterday...

Yesterday all my troubles seemed so far away.
Now it looks as though there here to stay...
There a shadow hanging over me
yesterday came suddenly.

Thursday as I was updating the blog and writing the part about having to make medical calls everyday I remembered I needed to call the cardiologist and follow up on the echo we had done to get clearance for Mason to get his cleft palette surgery done.

Well it turns the echo showed that the patch they placed to close the large hole between the bottom two chambers of his heart is bulging and causing the blood to back up. This in turn is causing increasing pressures which will cause his heart to enlarge and eventually to fail.

He is going to need open heart surgery again sometime in the next few weeks.

His heart.

The heart that was 99% fixed is now failing and we are back where we were 6 months ago facing another critical surgery and back to that great big scary place where you don't know if your child will live.

I feel like I took a step out of the door and got run over by a Mac truck.

I feel betrayed, though there is no one to blame.

Just when we started to feel like we could exhale and feel safe we are right back to January 6th and our beautiful baby boy who today looks like this..

Will look like this again..

I cannot bear the thought of it. His chest being opened up, his heart stopped, not again.

I'm terrified. I feel like there's a two ton anvil sitting on my chest and I can't take a deep enough breath to fill my lungs.

Someone asked me if there was anything they could do to help.

There is.

Pray, if your beliefs lead you that way.

Send a little hope this way if you have any to spare because I'm feeling a little low at the moment.

and believe for us. Believe that he's going to be just fine.

Because we don't work without him

Yesterday came suddenly indeed.

We are waiting on a referral to see the cardiac surgeon and then we will know better when the surgery will be. I will let everyone know as soon as we do.

Dear Heather

Dear Ellen, Dear David, Dear Mom, Dear everyone who has been asking me so long for an update.

This is for you..... and for Mason
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

We have been home twice as long as we were in the hospital.

Impossible. I can't bend my mind around it.

The two months at the hospital felt like forever. Like we were trapped in a dream within a dream and lived an entire life only to wake up to realize that in reality only a short time had passed (If you haven't see Inception then this reference wont mean much to you).

These last four months have flown by. So much has happened. So much has changed and somehow our new normal has become....well normal. The Dr's appointments, the referrals letters, the care book, the constant battles, are just part of our to do in a day just like grocery shopping, or getting the mail.

Your first Easter Basket. I accidentally bought you a preemie outfit (because it coordinated with the outfit I bought for Pierce) we almost had to grease you to get you in it.

I'm sorry for the long delay in posting. It has been mostly due to time management issues....as in I can't manage to get done everything I need to do in the time I have to do it. If you could see all the started and unfinished drafts for the blog you would laugh (or is it cry) along with me.

Everyday I SWEAR that I will finish my post and update the blog. I put it on my long list of must-do-today-no-matter-what list but it always falls after.

Best Easter Bunny Ever!

After the two to three medically related phone calls I have to make (which always take forever)

After the Dr's appointments of which we have at least two or more a week.

You can tell your loving this!

After I spend time trying to take care of your medical needs, and making sure Pierce isn't feeling left out (but I struggle with this a lot).

After the laundry, the dishes, the groceries...always after

Love that Smile!

Then night comes, impossibly fast, and I have to decide. Blog or sleep.

Guess which one wins?

It took a while but your brother actually enjoys you now
and will even hold you (for a tiny bit) for pictures.

I actually am going to try and catch up the blog for the last few months in future post so for now just a quick letter.

Dear Mason,
My beautiful boy. Just a few days ago you turned six months old. Half of a year.

Just 7 months ago I cried myself to sleep most nights with only the one thought.

Live

Whatever it takes. Please just live.

and here you are. SIX months old and thriving with more personality than any one kid needs. You amaze me.

There are so many things you love. Pulling on my hair. Watching your brother jump around and spaz out. You love to watch everyone and everything around you and are always so aware of whats going on around you.

You put everything you can get your hands on in your mouth (and get quite upset when you can't get whatever you want into your mouth).

Father's day. Daddy's shirt says property of Pierce and Mason (SO TRUE)

You've been rolling for a while now and can even get onto your tummy when you want to. You haven't quite figured out how to roll back off your tummy but it's only a matter of time. You've discovered your feet and love to roll holding onto you legs till you look like a confused Sumo wrestler.

Your getting better and better at holding your head up. We work on it every day. Some with your physical therapist Marquita (who you love and you always fart on) and tons with me and Aunt JJ.

You have started to giggle. Your Aunt JJ can get you to giggle better than anyone. It's a really soft giggle almost like a whisper and if a person didn't know you well enough to hear it they would miss it but it's one of the happiest sounds I have ever heard. I treasure it every time it happens and hope to catch it on video soon.

You love to sleep being held in someones arms especially your Daddy's. You both run so hot it's like putting two heaters together and Daddy starts sweating soon after he starts holding you but he just sweats away because he doesn't want to put you down. You just tuck your face into the crook of Daddy's arms and snooze away even though your hair ends up plastered to your head with sweat. I think if you could talk you would call it your happy place.





You have the most amazing hair and it sticks out and up and around in astounding ways. No matter how hard we try and tame it.

You fall asleep around 7 pm and wake around 6 every morning. You'll play for a while and let me sleep in a bit but once you get bored you'll cough because you know I will wake up immediately to check on you (you little stinker). I will sit up and look over the side of your bassinet and you greet me with the biggest crooked smile I have ever seen and I love it every time (and it makes 6 am after only a few hours of sleep more bearable).

My Yankee Doodle Dandy boys

You look so much like your brother did at the same age (except he was off the charts large for a baby and your off the charts small for a baby) it takes my breath away sometimes. I look at the two of my beautiful boys and know I must have done something right to deserve all that I have been blessed with and I still almost can't believe that I am the mother of two boys.

I loved you from the moment I knew I was pregnant with you, the first time I saw you, the first time I held you, and all those long nights and terrifying days in the hospital my love for you grew and grew but oh Mason how I have come to love you. Not the idea of you but YOU.



I would never have wished CHARGE for you but now that your here I wouldn't wish it away because that would mean I wouldn't have YOU.

YOU my crooked smiling, whisper giggling, Sumo wrestling baby boy.

Happy six months baby. Looking forward to a lifetime more.


Love, Mommy
(ugh forgive the spacing on this post. I've been trying to fix it for an hour and I give up now)