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. :)

Some time with the devil...and it's extubation day again!

Your Dad figured out how to get us WiFi in our room so I spent some time with the devil last night (aka Google) doing a little re-search and reading about things that may, or may not, affect you in the future.


None if it was particularly helpful, but it's a bit like crack, one hit and your hooked and no matter how you tell yourself to stop you keep clicking the next link.

At one point your Dad asked me if there are any happy stories out there? There are but I just wasn't finding them last night.

I seem to have falling into a dark place and I can't find a way to get out of it right now.

So now after hours of crying last night I have a killer headache. I'm mad at myself for staying up so late, or if I was going to stay up so late why didn't I go sit with you?

I finally got myself to get up and get in the shower (Dad was at your bedside taking his shift) and after more tears I figured out why I was feeling the way I was. I remember it from December. It's because we're back in the unknown.

Dealing with the known something like your surgery, while hard, is much easier than dealing with the unknown. With your surgery there were Dr's explaining what was wrong, what they would do to fix it, what the odds of death were, etc. There was someone there explaining, and outlining the details. Eliminating the unknown as much as possible.
There's no one there to outline what the future holds. Eliminating any of the 1000's of possibilities. For now they can't even give us a why.

I hate being this way. Making Dad worry about me. He has enough to worry about with you. I get back to "normal" soon. I think I just need to be sad for a while.


**************************************************************************************

Today was uneventful till around 3 where they were ready to try extubate you again. We were lucky to have Jose the respiratory therapist here and he suggested using a different kind of non-invasive oxygen treatment that gives you an extra push of air that helps keep your lungs open they usually only use in NICU and it's working!

Your breathing is so much better. You still need a lot of suctioning but your not struggling at all and I do believe ((FINGERS CROSSED)) that your going to stay off the breathing machine this time.

If you keep doing well we might even try feeding you tomorrow.

The Dr's did discover that you have a very small cleft in your palette. I didn't believe him as I had checked your palette a few times myself but you do. It's about the size of a pea and very far back so that (and the fact that you've been intubated) explains why it was missed.

While it's not something we wanted to hear it could be a lot worse than it is. Now we just have to find out how this will affect you and how it will be fixed.

You and Dad bonded watching football

I got to hold you twice today!

Look Ma no tubes part 3!


Juliet your nurse who has the most amazing reassuring and calm demeanor. Somehow she managed to take care of you and Dad and I all at the same time. She was your nurse on surgery day and the day after. I don't thing we could have survived the day without her. Today was the last day before she leaves for maternity leave. I'm thrilled for her but we are going to miss her very much.

The heart VS the head

Well I wasn't wrong

You got re-intubated at around 2:30 am. I wasn't here but from what Dad tells me it went something like.

Around 11 pm they deiced that your drop in heart rate are from you bearing down. Maybe in pain, or trying to breath deeper, but not from any problems with your heart. Which is such a relief.

A few hours later your Dad and your nurse (who had also become more and more concerned with how you were struggling to breath) were expressing to the Dr (a fellow) that you seemed to be struggling even more with breathing but he kept assuring them that your labs looked fine and that you were fine.

Finally around 2-ish the head Dr. came in. Listened to your lungs for a short while and said that the wheezing sound the fellow had heard was because your left lung had collapsed. Sure enough an Xray showed that it had and you were re-extubated.

Your Dad said once you were back on the breathing machine you relaxed almost immediately and were much more comfortable but you were wide awake and he just couldn't leave you. I want you to know that even though your Dad only got about 3 hrs of sleep the night before, he stayed with you all night till around 5:30 in the morning. I can't imagine how tired he was. Your and your brother are so lucky to have a Daddy loves you and is so devoted to you.

The head Dr. expressed her concern to your Dad last night that she felt you might be getting too much pain meds and so your too sleepy. If you too sleepy then your not breathing deeply. If you not breathing deeply then you get atelectasis (collapsing of air pockets in lungs) which might have led to your lung collapse.

This left me feeling very guilty as I have express my concerns about controlling your pain many times with your nurses and I'm afraid they might have been giving you more because of me.

My head understands exactly what the Dr is saying, my heart almost doesn't care. The thought of you suffering in pain even a little bit in unbearable. But my head also knows if you don't get off the ventilator as soon as possible it can lead to all sorts of additional problems.

So then who wins, my head or my heart?

We need you home. We need you well and if that means you have to be more awake and not so much pain meds then that's what it means. You have to cry a little more, than that's what we will have to do. I can't believe I'm basically asking my 9 day old to suck it up and be strong but there it is. But I am going to be sure we are walking a fine line between comfort and control.

I don't know if my heart is going to make it.

So I'm at your bedside with your nurse Juliet. She's an amazing nurse and I feel so lucky that we will have her for her last two days of work before she goes on maternity leave. She is one of a few nurses that have been a gift to us.

She and I were talking about the pain meds and the Dr's concern that you might be getting too much and she doesn't feel that you haven't been getting too much. She feels that the amounts are pretty typical for what they usually give. That makes me feel a little better but I'm still going to try and hold off on asking (or insisting) they give you something as quickly.

Your Granny should be here any minuet. She is going to stay with you today so your Dad and I can get away. Not from you, but outside away from the hospital for a while. Depending on how your Dad feels we may go see a movie, or if he's too tired I might just go do some shopping. Or maybe just sit in the sun and try not to think. I feel guilty being away from you but I think it will do us good and with both your Granny and Juliet here to take care of you I have nothing to worry about.

I have a surprise for your Granny. Juliet says even though your on the breathing machine there is no reason why we cant hold you so when Granny gets here we are going to let her hold you. It will be the first time she has been able to. I can't wait! What a fantastic surprise that will be.

We are not sure what the plan is today but she's pretty sure you wont be extubated. I have to admit I'm relived.

It will give my heart, and my head, a rest.

WOO HOO!

CELEBRATE TONIGHT!


Mason is extubated and doing great.

I'm far away at home seeing the Dr and running some errands and it's breaking my heart that I'm not there but I'm so happy I'm floating.

I'm told I get to hold time tonight as long as he continues to do well so I'm finishing up and hauling my butt back to LA.

BTW..my cell phone is dead so if you've texted me or called that's why I haven't' gotten back to you.

Doing the happy dance! Come do it with me!