Just breath

Sorry for the lack of post lately. We've been on vacation.

Well not really but we did get away from the hospital for a bit.

On Monday I took Pierce to Disneyland for the day while Daddy sat with you then I came and sat with you after shift change till around 10:30 at night.

We had so much fun I deiced to ask cousin Whitney if she could stay with you on Tuesday so Daddy, Pierce, and I could spend the day together at Disneyland.

Cousin Whitney was the best-est cousin ever and stayed with you the whole day from morning till around 11 at night so we could even spend the night there and play all day.

Thanks cousin Whitney!


We missed you every second we were there but it was so nice to get out of the hospital and breath some fresh air and soak in the sun for a bit (even if I did burn my scalp). It was the first time Daddy and I got to spend more than a few minuets together since you went into the hospital for your first surgery.

Don't tell him but I've missed him.

You are doing pretty well. Your feeling really good which is the best thing of all. Your playing, cooing, making spit bubbles (your new favorite pastime) and generally just being your charming self.

At first they told us you would be able to go home Wednesday or if not Thursday for sure.

When I came in Wednesday morning they were concerned about a small amount of redness they saw on your incision and wanted us to stay till Friday just to be safe.

This morning they brought up the idea of either sending you home Friday and you would be sent home on 3 IV antibiotics that I will be giving you around the clock and we would have to come back once a day M-F for about 3.5 hrs for your oxygen treatments x 6 days plus visit the heart clinic to have your wound monitored once a week.

or

Stay till Monday morning. Get all your oxygen treatments done as an inpatient (since they do them twice a day M-Sun as an inpatient) and go home Monday afternoon with the antibiotics and coming back only once a week for the wound follow up.

As much as I want to grab you and run from this place it only makes sense to stick it out a few more days and get these treatments done so we can have some semblance of a normal life.

They are going to send us home with an IV pump (and the only reason why they are going to is because I'm a nurse and they know I can do your IV's the same as they could) and we will be giving two of your antibiotics three times a day and the other one once a day.

For 3 to 6 weeks

I keep telling myself to just breath and to not get overwhelmed.

It never ends up being a hard as it seems it's going to be.

Just breath.

Whatever it takes to get you home.

Sternal dehiscence

Yep, it's as bad as that sounds.


They took you to surgery about 11:30 and estimated that it would take about an hour and a half till you were back in your room.


Aunt T came and kept me company and kept me from going crazy. At about 12:40 then sent a text to say that you were open and surgery was starting.




and then we heard nothing.

for over an hour and a half

n.o.t.h.i.n.g

I was going out of my mind. I've sent off many patients to get a debridement and it's usually an in and out procedure so I knew something was going on for it too take so long.

I went to the front desk and asked them to call for and update (thanks for the idea Auntie T) and the report was they were just closing you up.


So we hung out for a bit then I just couldn't wait anymore so I went upstairs to find your nurse Rea. She had heard that you should be coming up soon and that you had needed some blood and an albumin transfusion.

So Aunt T and I stood in the hall waiting till they wheeled you by and we both thought you looked good. Pinker then before surgery and already off the breathing machine.

Very soon after Dr. Bailey came to talk to us and explain what they found.

The wires holding your sternum together had come loose on the one side and your chest plate was floating free and the sides were bumping up against each other. (gee wonder why coughing hurt you so much?).

This constant irritation causes inflammation and infection and that is why you were not healing very well.

The opened you up and cleaned out all the infection and debrie they found. Dr Bailey told me that the infection didn't go to the bone but some cartilage was involved. So after a good cleaning they flooded your chest with betadine and use a special closing technique to close the sternum (even though I asked about this twice I can't remember what the special closure is called but Aunt T remembers so I will have to ask her) and then further re-inforced it with sutures on the outside of your chest.

I asked Dr. Bailey a couple more questions about how this will affect you long term (it wont), will you have a void where you lost tissue/cartilage (you wont). And then we chatted about a few different things.

I then remembered to ask him about the blood transfusions and Dr Bailey, as easy as you please, told us that they had nicked your right atrium (upper right part of the heart) and they had needed to replace some blood that you had lost.

I was a little startled to hear this but know that it sometimes happens so at first it didn't faze me all that much.

Then Dr. Bailey, again as easy as you please, said and I quote...

Yes the anaesthesiologist had to put his finger in the hole till the blood transfusion came. It was a bit scary there for a minuet but it turned out OK.

At this I gasped grabbed my heart and a hold of the banister and told Dr Baily while as a nurse I find that fascinating, as a mother it makes me want to pass out.


We all got a good giggle over that one.

So now your back in your room. You were miserable with pain but Rea got you Morphine every hour and your now settling in more comfortable.

The plan now is to re-start the oxygen treatments twice a day and if everything goes well and there are no complications we could get discharged in a week and continue your treatments as an outpatient.

So you hear that Mason .....NO complications.

No complications and we can take you home.

On a personal note George and I are overwhelmed and more touched that we have the words to say at the out pouring of love, support, and prayers we have received from all over the world. I have no idea why our journey has touched so many but I want you all know how much it means to have you travel with us as we build our road with hope.

I feel like you all lifted our son and held him up in the love and the light.

What an amazing gift you have given us.

What an amazing gift you have given our son.

I can't wait till he is old enough to understand what wonderful people you all are.