It's becoming more and more apparent that Ben is requiring his vent on a regular basis. I'm not really thrilled with this realization. Although I am grateful that we have avoided hospital time thanks to the vent. I don't vent him ALL the time, but if he's off of it for too long a period, it really does a number on his left lung. Yesterday I took him off the vent around 3pm. We put him back on the vent around 9pm and before hooking him up, we checked his saturation. It was 73%. That seems to be a regular tred as of late. This is a child that has never had issues with his oxygen levels unless he is sick. The good news is that the vent 'pops' that side back open when we put him back on. The bad news is that this is a progression in the wrong direction. It's a visual slide backwards...and it scares me.
12 comments:
I can imagine it is scary. I wish I knew what to say or somehow make it better. You are an amazing mommy with amazing children. Ben has such a big place in my heart, and I thank you for letting him sneak in there forever. :)
I'm sorry your dealing with this. I also have a question. Did Bens fontanel close early and his head stopped growing? Our baby girl that we are trying to adopt, they say she doesn't have a full brain, but also that her fontanel has already closed. But I'm pretty sure there's surgery to open it up.
Lacey, Ben's brain did not form, thus not allowing for his head to expand. I don't think it has anything to do with the fontanel. There is surgery to help with that, but it wouldn't have been beneficial for Ben.
LOVE, HUGS and PRAYERS!!!!!
I LOVE that picture of Ben--so beautiful!
xo
big SIGH
I'm sorry to hear that Ben is needing the vent more and more. That must be alarming. It is great though that we have the technology to keep him healthy and well at home!
{{HUGS}}
Oh my heart is with you. It's a heavy feeling to wonder about the future... I love you and am sending you a great big HUG!
Love you, Love Ben.
I'm glad you have the vent now so Benny can be at home more with you. I still haven't figured out how to not feel scared. Most of the time it is late at night before I fall asleep that it all just avalanches. I think one of the things that I pray for the most is to not be afraid of the future. Still working on it...
i know I have multiple favorite pics of Ben....I'm adding this one to the list. I love it!
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