Sunday, January 16, 2011

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.


mj said... Best Blogger Tips

No more Dr Googling Amy! Dont make me block the internet from your laptop! I've been there and done that myself and nothing good ever comes of it. Masons doing great, he got through his surgery and hes recovering and remember to be thankful for that. *hugs* to you

The Houston Family said... Best Blogger Tips

Don't be sad! I know it is a ton to deal with right now. I understand the WHY questions. Why Mason? Why me? Why us? What did I do wrong? Most of the why's can never be answered and it takes time to get past them but you have to, for him. Focus on one day or month at a time. Before he leaves the hospital get his therapy set up. Or at least his evals. Talk to a social worker about medicaid if he is not already on it. I hear California is the place to be for kids. There are programs out there based on Mason's income and not yours (medicaid waiver programs). Stay away from google. It is heart wrenching! When I was reading things on google it about sent me over the edge. Feel free to contace me if you would like. My email address is I know it may seem odd to reach out to someone you don't know, but sometimes you just need to talk to someone that is a little further down the road than you are. God bless you all. It is a long road and it is often painful, but on the other side of the coin you will appreciate life and all the little things more than most people because of this experience. Mason will bring you more joy than you can imagine.

Anonymous said... Best Blogger Tips

I have tried to post messages before but they didn't go through - I'm praying that this one does. My aunt's daughter, who was born two weeks before my son, had a very similar problem. PLEASE know that she's a very happy and healthy 10 year old right now.

Michelle said... Best Blogger Tips

Someday you will look back at this experience and then at your beautiful boy and smile. That day will be soon, I just know it...

vback said... Best Blogger Tips

Random stranger post alert!!!! I was pointed to your site from Kristen at Couponing to Disney and I make daily stops to check in. You made the statement that your husband wanted to know if there are any happy stories, well to me your story is a happy story. I find you and your family very uplifting. I know living it right now is exhausting and confusing and stressful but I just wanted you to know that to a stranger looking in Mason's story is a happy story!!!

Donna said... Best Blogger Tips

I too am a random stranger. I found your blog through Couponing to Disney. I have checked in daily on baby Mason and your family. I hope things work out for you and Mason. He is so cute. You said that you didn't see any happy stories out there. I know of one, I don't know if this baby has the same things going on as yours but he too had to have heart surgery after he was born. You should check out her blog it's called Just because I am Me. I'm sorry I don't have the link but her story is inspiring as is yours. Hang in there! I think there are a lot of prayers out there for you and your family.

dxeechick said... Best Blogger Tips

I totally agree! The unknown is the scariest part. Many tears are shed over the unknown and it probably won't get easier for awhile. Even being home, I cry, doubting my abilities to take care of my special little boy.

Just thinking of you and hoping Mason will be making progress each and every day. Even just the little things.