Monday, March 8, 2010

March 8, 2010 - 17 days old - A Double Bumpy Day

Written March 8, 2010 10:44pm 
(From Jayden's CaringBridge Page)

Today was a double bumpy day with both Alicia & Jayden. Alicia started to show signs her blood thinner was doing the job a little too well & wound up in urgent care to see her symptoms needed treatment. As soon as the doctors were comfortable she was in no danger they released her to go up to the hospital to see Jayden. 

Alicia had been getting updates that Jayden was hanging in there; however we knew that he was still needing his oxygen levels increased & the CO2 levels were also still creeping up. We were hoping that just a little longer on the standard ventilator would see a positive turn and we could start to seriously discuss a surgery date. 

As we were walking into his area she was devastated to see the respiratory therapists & nurses just finishing up putting Jayden back on the oscillating ventilator again, this time combined with inhaled nitric oxide (not to be confused with nitrous oxide). 

One of the hardest things about being a parent is seeing your child hurting. Sometimes I wish I could go back to when my kids were little & all they needed was a kiss & a hug to make things better… :-(

We are not sure if he had nitric oxide before the ECMO but it is definitely the first time he has had it since coming off ECMO. It is a helpful treatment as it relaxes the blood vessels so that blood flows more freely & hopefully will bring down some of the hypertension in the lung but it was NOT the turn we wanted to see. Luckily his numbers started coming back down right away so we will take that as a positive sign. They also have pretty much ruled out the vena cava syndrome but are still not totally sure what is causing the swelling which has advanced into his torso. They changed a couple of other meds & his output is better so hopefully the swelling will go down soon. Surgery seems so far away now but we still pray.

Thank you all for the sweet guestbook entries & well wishes. We read every one & feel so grateful that you care so much. We're sure your prayers & wishes are a big part of what is helping Jayden get through this! If any of you have sent Alicia emails on her personal email & have not got a reply it is because her computer is down & she is borrowing my laptop when it is open.

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