All is quite and going well

I've spent the afternoon with you. You've been sleeping on and off and catching up on your sleep. When your awake you've been crying and unhappy. Right now your obsessed with sucking on a damp rag. At first I just assumed that maybe your throat was sore from the tubes but I finally realized your hungry. Starving actually. It never occurred to me because you've been tube fed continuously pretty much since birth and have never known was it is to be hungry.

They started you on a small amount of Pedialyte. As long as you tolerate it well they will increase it up every hour and should have you back on your formula by tonight.

We've been weaning you off the oxygen. You now only on 4 liters and should go down to 2 liters in just a little bit. I'm not sure if you will be able to go back to room air tonight but we should get you pretty close.

Your blood pressure is still high even on medications so it doesn't look like we will be able to go home tomorrow. Maybe either late tomorrow night or Monday morning (most likely) either way your are doing and looking so well your Dad and I just don't know what to do with ourselves.


Cousin Lauren and cousin Whitney came for a visit. You were happy to see them but mostly you just wanted to suck on your towel.

We are so close to home baby. It almost seems too good to be true.

I want to say thank you so much to everyone for all the support, prayers, comments, and good wishes. George and I can't help but feel like you've been a big part of Mason doing so well and getting us so much closer to home.

We appreciate each and everyone of you so much. I know I've said it before but it feels so much better to know we aren't alone.

Go Team Mason!!

Oh happy day!!!

We extubated and doing great!!

Such a different experience from all of our extubations before. Right now he's on high flow and doing great. They will titrate down the oxygen every two hours and who knows we might even be back on room air by tonight.

Dad and I are taking turns at your bedside trying to keep you from pulling on your tubes so they don't have to use restraints on you. Right now your really enjoying chewing on a damp towel.

FYI - they tried to get me to leave when they extubated him. I refused. I said to them that I was there for every intubation and extubation so far and the reason why I was able to give them so much information about his history is BECAUSE I was there at the bedside for all of it. I argued that all the latest research said that making the family part of the health care process was beneficial to the patient and that their policies were antiquated and unreasonable.

The Dr then said she agreed with everything I was saying and that they were trying to get the policies changed.

I said great you can start with me.

So I stayed.

Daddy is taking the first watch. He has strict instructions not to leave your bedside if they try and make him.

I'm going to get some rest and be back this afternoon.

p.s. Dad just sent me a text that they got him a chair. :)

Not going to get extubated tonight...

So we waited all afternoon for the ENT to come and extubate Mason. Finally around 9 pm the ENT fellow called and said they didn't need to be there to extubate him.

They just said if he needed to be re-intubated to do it with a 2.5 ET tube and to have anesthesia do it and then they would do a bronchoscopy on Monday.

So the unit hears this and figures they don't want to deal with a kid going bad in the middle of the night so they would just wait till morning to extubate him.

Perfect ((insert sarcasm here))

So I insisted if they weren't going to extubate him they needed to sedate him. The resident tried to argue that morphine was enough but just then Mason started waking up, holding his breath, and turning blue.

So I got the sedation.

I stayed till Mason was good and snowed on drugs. George and I are back home. Going to go to sleep early and get back early in the morning before anything happens.

p.s. I was in the room for two hours. Nobody even tried to get me to leave. I'm thinking my nurse may have been warned. :)

Another one down

Mason,

It was a late night and a really early morning. We loaded you and Moms Diet Coke and we were off. A little scared and a little sad. After all you are not even a year old and already your second heart surgery.

You were kicking and smiling at 6 AM like only a little boy can, the nurses were trying to get your attention and you were just paying hard to get. I was looking at you in that big bed and remembering our CHLA day's.

I could not help but to think of how big you are how stubborned you have gotten, or you have always been, after all you made it through 2 months that would have brought most grown men to tears.

Stubborn comes in real handy when you are recovering from an operation. A part of me remembers this and thinks you will be just fine. Another still thinks that you are so small and fragile how could you possibly handle all this? But then I remember that you are stubborned and determined to do things your way.

Like when you deiced that you want some attention, you do not make a lot of noise but you will squirm kick and turn until someone comes over. Sorry i am rambling.

Your were taken into surgery and your Mon and I went to wait at the cafeteria. Hospital food, you will love it.....

So we waited and remembered where we have been and where we are now. We were finally paged and a good thing after having my third bag of Flaming Hot Cheetos I may need a future medical procedure. You are gong to love these things, Pierce does.

So the nurse at the check in station asked who we were here for and we said "Lozano" the nurse jumped right up and took us to a small room that was marked patient conference. I looked at your Mom and asked is this the type of room they bring you to tell you there was a problem? Then Mom and I spent the next 20 minutes thinking of what if's. Turns out they put us there because they wheeled you right by that room to get to your bed.

Daddy feels dumb. Everything is OK. When I first saw you with the tubes and wires my heart sank a little bit but when you opened your eyes and looked at me like you wanted to grab my glasses and suck on them. I then knew you were going to be OK.

Night is falling and we are waiting for word that we are going to take the tube out of your throat. Your Mom and I are waiting for the ENT so we can see if you breath on your own.

We do have a deal if you breath on the first try and you get a fabulous tree house that connects to the pirate ship, if that does not work for you, on the second and you get a slight smaller tree house with a zip line to the pirate ship. Third time and you get the tree house and I only give you and Pierce two soup cans and a rope. I think the first is the best choice.

You know your Mom will make me build all three. So take your time and recover. You, Pierce, Mom and I have a lot of building to do, so let go home. I love you Mason.

-Dad

It's Jelly time!

We finally got to go in an see him around 2 pm. We could see everyone running back and forth working on things for him. You had to know Mason wasn't going to take it easy on them.

His blood pressure is a little high but they are treating him with meds and expect him to respon to them soon.

His main issue is his airway as always. They want to extubate him asap but they want his ENT Dr there when they do it and nobody knows when the Dr will get there.


He's really fighting the tube and so far the pain meds aren't enough to keep him comfortable. They are walking a fine line between giving him enough pain meds to make him pain free and not giving too much to so he's too sleepy to get off the breathing machine. As hard as it is to see him suffer
in the long run it will be so much better to get him off sooner rather than later.




I've told them I don't want them to make any decisions about extubating him without me there and they have agreed to have us at the beside to speak with the Dr before anything is changed.

When we got to the room the nurse, who is very nice, gave us the 5 minuet only visit speech. I told her that was not OK with us. She tried to tell me that she might be able to let us stay longer once he extubated and I asked to explain to me how I was interfering with the machines in any way.

She didn't have any answer except that it was their policy. I told her I thought the policy was ridiculous.

We stayed an hour.

Then they got an admit and then we gladly stepped out.

While we were there I answered 20 or so different questions about Mason's anatomy, history, reactions, etc. All which the nurse admitted they needed to know and made their job of taking care of Mason so much easier and a positive outcome so much more likely.

But they don't want me at his bedside. Make any sense to you?

Me either.

George and I have discussed it and while we are going to try and keep an open mind and see how it goes if the visiting policy stays as restrictive as they say they are going to make it we will not be bringing Mason back here for anything other than minor treatment.

Why would I want to bring my child to a place that wants to keep me away from my child.

Why would anyone?

It's so hard to see him in pain and not be with him, but to be near him, to know that we are so much closer to getting him home and to a normal life span.

What else really matters?

He's in recovery!!!

He's in recovery now! We got to see him for a second as the wheeled him by.

He's still intubated. The nurse told us that the surgery went really well but he has some airway issues. We don't know if they found something new or if it's still the larynogmalicia. We are waiting on the Dr's to come and tell us how everything went.

They put us in a little conference room to wait for him to come by. It totally reminded me of the little room we put our families in when we had bad news to tell them. At QVC we called it the crying room. I almost passed out and threw up waiting to see him. I know know the feeling of having your heart in your throat.

I had a PB&J for lunch. I thought it was fitting (that and I guess seventh day don't eat meat so I didn't have much else to choose from)

....OK just spoke to the Dr's heart went like gang busters not much to worry about there. His airway is even more narrow then they thought. The Dr's are in conference now to see what the plan for his airway will be.

Surgery update..

proceeding as expected. He's on bypass.

FYI - Loma Linda gives out these pagers that they update at least every two hours so you can know how your child is doing. Gotta give LL an A+ for this one.