Hayden's Hope

Sunday, June 5, 2011

Moving n' Shaking

Exciting things are happening in Room 8 at the UCSF PICU ward! Not sure which I find the most exciting but will start off...

First of all the CO2 monitor was uncerimoniously thrown out. (Picture me throwing it out the window...) Yeah!!! Not that I didn't like the "Iron Man" look, but the new one also didn't read accurately and the doctors decided that Hayden has been doing so well that we really don't need the CO2 monitor any more.

Hayden has been doing great at his drinking. We've had Coke, Diet Coke, Odwala Mango Tango, Jamba Juice. He has been allowed to drink 2 oz five times a day. Plan on moving up to some sort of pureed food i.e. applesauce.

On a personal note, I am getting closer to earning my degree as Nurse Ratched. I have officially learned how to suction Hayden, although I told Hayden he is NOT under any circumstances to wake me up from my beauty sleep for suctioning. In the middle of the night he can press the call button for the nurse. I also am now experienced in lowering and reinflating Hayden's cuff when he drinks. I feel so important :)

Tonight he lost a tooth. I got to pull it out. Those little buggers are harder to pull out that they look. This tooth will be donated to the FOP lab becuase baby teeth have stem cells in them. The FOP lab will use the stem cells in Hayden's tooth to do FOP research. I hear the tooth fairy pays triple when you're in the hospital.

The two best things that have happened this past week is
-One: the ventilator is now permenantly on a CPAP setting which means that it is basically just blowing oxygen in at a set volume. The volume has moved from 15 to 8 in the last week. So Hayden's lungs are really showing us what they are capable of doing.
-Two: the very, very best for last. Today Hayden was disconnected from the ventilator for 45 minutes AND he is still alive to talk about it! So utterly amazing. I started crying when John called to tell me about it. What they do is attach whats called a Trach Cuff to his Trach and it just provides 100% O2 with out any type of support, just like breathing outside. They called it breathing sprints. We are getting Hayden's lungs in shape to get the heck out of here!

Look Mom I'm off the Ventilator!!

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