Happy Easter everyone!
This week has had a lot of ups and downs:
Drew has started to have severe breath holding spells when he is upset. He can hold his breath until he turns totally blue and passes out, causing the alarms to go off and the nurses to come running. No one seems to know why he is doing this or what can be done about it.
We also got results from the genetic test that we hoped would confirm Drew's suspected diagnosis. Surprisingly, the results were negative (apparently genetics doesn't have the answer for everything?) so now we don't know why he has this breathing problem. It's frustrating for us, but doesn't make much of a difference for Drew, since his symptoms need to be addressed regardless of the cause.
The great thing is that we have started to be able to do a lot of Drew's care ourselves. We do most of his trach care, with nurses watching in case of an emergency. We can now pick him up with just the two of us, instead of having to have a nurse put him in our arms. And yesterday we gave him his first real bath to wash off 6 weeks of accumulated stinkiness.
Drew is usually awake for most of the day, waking up around 8 or 9 am and going to sleep around 8 or 9 pm, with convenient naps around lunch and dinner (I'm not sure what kind of trouble he gets into at night). He loves reading books, watching his mobile, spitting his soother onto the floor (once they hit the floor the soothers get replaced; the soother count for this weekend? 5, so far) and spending hours contemplating his musical aquarium (aka. his "crib crack", another loaner from dear Renna).
Here is a video of him helping get ready for his bath by unhooking his ventilator.
kb
6 comments:
Happy Easter David, Karla & Drew.
Drew is getting bigger & bigger, what a cutie.
I must confess to being a wee bit confused. How is Drew able to hold his breath until he passes out when he's on the ventilator? Is he able to be off it for periods of time during the day?
Brittany started throwing temper tantrums when she was 3 months old ~ she'd hold her breath until she turned blue too. Mom (grandma) put a cold cloth on her face to make her breath.... as I panicked in the background! Not the same I know ~ just brought the memory back...
We continue to pray for all of you. Love you tons.
Love Aunty Lela
xoxo
maybe he wouldn't pull it out if it didn't make such a cool noise when he did?
Good question.
The ventilator is unable to force Drew to breathe if he holds his breath (also called chest-wall freeze). It works under "normal circumstances" breathing for him if he forgets or breathes too slowly. There is nothing we can do when he holds his breath other than coax him to breathe or wait for him to relax. Babies will hold their breath, like Brittany did, but because Drew doesn't have the drive to breath he doesn't always know to start breathing again when he needs to.
Hopefully we'll get this figured out.
We continue to pray for the 3 of you. We hope you figure out soon why Drew holds his breath for so long :( With the smarts and will he has from the two of you, I am sure he is very determined! And VERY adorable and kissable too! Also, are you still on W. 11 Ave? Or a new address? Sorry. I probably asked you before. Love, Amie & Mitch
Really starting to show his own personality.....and really growing!
Are they doing any more testing to determine the cause of all this, since the genetic tests were negative?
Love and hugs to all three. Jo/Bob
Hi David, Karla, and Drew,
We are just catching up with you guys now that we found your blog.
We heard about it through Nick's Mom (Aunt Jane).
After we left the NICU we had to mass order a bunch of those soothers. They are the best but you either lose them or they wear through them.
Some days it seems to hard to understand a baby. I know little Drew will be happier when:
A) they turf the tubefeed
B) you guys all get to go home
Thinking and praying for you guys,
Denise, Nick, & Adriel
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