The bitter and the sweet

Just a quick post. I'm beyond exhausted and want to spend the day with Pierce tomorrow before he goes to stay at my sister's while Mason is in the hospital.

Our pre-op day started at 9:15 and didn't end till around 3:30.

First a stop at financial, then a long wait, then a visit with the nurse, another long wait, the nurse practitioner, then wait, a meeting with the surgery nurse coordinator, the a tour of the ICU, an X-ray, and finally we got to go home.

They thought the might have seen a little atelectasis (collapsed air pockets in the lung) but your X-ray ended up being normal.

The sweet.

Your the first case of the day so we will get there at 6:00 am and then your surgery very soon after.

Other children, who don't have problems other than the heart defect, have gone home as soon as 24 hrs after surgery! With your respiratory issues, if everything goes really well and they are able to extubate you right away they are thinking letting you go home as soon as Monday.

Don't you look excited

Stop taking pictures mom!

Of course if you don't do well and can't get extubated... well then we are in for a much longer stay.

Your bigger, and stronger, and have had months to recover from your throat surgery and so we are hoping for the best.
The bitter...

As I was going over the hospitals routine and policies with the surgery nurse coordinator she informed me that our visitation time with you, at least for the first day or so, would be very limited. That they would let us see you for only a few minuets at a time and then we would have to leave and come back after a time period.

Yeah, um I don't think so. Not gonna happen. Not in this life time. Not ever.






I told her to go ahead and open your chart and write down that I was going to have a problem with that, and that while I understand having to step out for procedures, shift change, reports, and for other families privacy, but otherwise I would not be separated from my son.


Period.


She went on to explain that since you are having open heart surgery that your treatment would be very complicated. I reminded her that you have already had open heart surgery, and a much more complicated surgery than this one, and not only did CHLA welcome us at your bedside, but encouraged us to be there.




She then went on to say that they would be doing your recovery at the bedside and that would take hours. I told her they did your recovery at the bedside in CHLA and we were able to be at your bedside about an hour and a half after your surgery. And again, that surgery was much more complicated than this one.



She then went on to say well maybe they would only limit our visit while you were on the breathing machine. I explained to her that I have worked with vent's for over 10 years and a families presence at the beside has never prevented the machine from properly ventilating a patient and that wasn't a valid reason to keep us from being with you.






She then asked me what kinda of a nurse I was. I told her critical care, and as a matter of fact, I often recover open heart surgery patients (though adults not children). I also told her in my 10 years I have never kept my families away from there loved ones.


EVER!


She then told me that she was sure the nurses would work with me to come up with a situation that we were both happy with.



I told her I would be at your bedside at all times except for shift change, shift report, procedures, and for other familes privacy.




I think she may have sighed very deeply. I almost feel sorry for her. Almost.




I did get to meet some of the nurses that would be taking care of you. They all seemed nice and mellow. I also saw several parents at the bedside so I'm not going to let myself get worked up over something that will probably not even be a problem.


But just let them try and and keep me from you


this momma is gonna roar!

Yeah, you think it's a bunch of B.S. too.

A letter to Mason

Dear Mason,

In December I started this blog with a letter filled with my fears and hopes for you. So much was unknown then. So many unanswered questions. I was ready to get going and face our future and just know. But at the same time I just wanted to stay where we were with you tucked safe inside me.

So much has happened since then.

So much has changed.

You have gone through so much.

We have gone through so much.

We've learned, and experienced, and grown, and fought, and won, and we have become a family.

On the 26th we will be bringing you to Loma Linda hospital for open heart surgery to give you a chance at life.


Part of me is ready to just get going and get the unknown over with the rest me wants to take you a run as far away as I can and keep you safe tucked up against me.

It feels like we are right back where we started last December.

Like our own version of "Groundhog Day" only without Bill Murry or quite so many punch lines (and a whole lot more Dr appointments!). But, we hope, with our own happy ending.

Even though it seems terrible to even write this it's so much worse now then it was back in then.

Then you where an idea, a few quick movements, fuzzy black and white image on 100's of ultra sounds, with a name and a beating heart but you weren't you. Not yet.

But now

You are you.

With your big deep dark chocolate brown eyes that already seem wise beyond your months. That crooked smile that radiates joy and makes all who come anywhere near it unable to resist falling in love with you. Your will. Your stubbornness (just like your Mama!). The way you already look at your brother like he's a superhero and the way your whole body dances with glee at the simplest of things.

And you, globally developmentally delayed you, in a room full of people all bustling around, poking at you, testing you, a mass of confusion and movement.

You look around taking each person in turn, till you come to me. Then you stop. Although you do not reach, you can not speak, you can not hear, and we are not even sure how well you can see. You stop, and the look on your face changes, and everyone sees that you recognized me. That you know I'm your Mama.

Of all the people there I'm the one you focus on and everyone in the room gives out an soft uncontrollable "awwwwww" and look back and forth between us and the love they see there.

It's so much worse now. The thought of losing you.

I have constant heartburn just thinking about it.

Not the kinda heartburn that you can treat with Tums. Not the kind that travels up your esophagus with spicy foods.

No this kind of heartburn is this constant ache and pressure on the heart. It fluctuates as thoughts pass. Sometimes the pain so intense it about bends you over and your heart literally burns, sometimes just a constant low heat.

I tried to explain the pain to your Dad once but it turns out I didn't have to. He already knew.

He's been feeling the same pain for a while now.

The other night I had just given you a bath and you were laying there all shiny and sweet. You were giggling in your breathless way as I blew raspberries on your belly and I as I looked at you I thought simply I can not do without you.

and I can't Mason.

In just three days we will be handing you over to a man who will have your heart literally in his hands. He will open your chest, and stop your heart, and try to save your life.

And once again your Dad and I will have one thought

One wish

One prayer

One hope

Just two words

Come home

That's it baby. That's all I ask.

Please just come home.

We can not do without you.

I can not do without you.

Tomorrow we will go to Loma Linda for your pre-op appointments. I think we will find out what time your surgery will be. I will update the blog tomorrow with any information I find out.

Till then my very talented, and lovely, friend Becki from Becki Cloud photography moved heaven and earth to do a family photo session for us the other week. I couldn't love them more, or be more grateful to her for the gift of these photos.

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.

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.