Very Scary Night

Friday night, actually early Saturday morning Sofia stopped breathing and had to be rushed to the hospital. Luckily the nurse was well trained and did the right thing (on her first night no less!), saving Sofia's life.

The nurse started CPR when she saw she wasn't breathing and yelled for help. Mommy then dialed 911 while Daddy helped and changed the trach. She was crying by the time the paramedics got here but it was very scary because she wasn't breathing regularly and was blue when Daddy ran down and first saw her.

We don't think she lost her pulse because they first tried the defib machine and it detected a pulse.

Sofia was rushed to Norwalk and then transferred to Yale when stable. She ended up having some blood in her trach (the drs think from the trauma of CPR et al) but other than that really no long term effects that we can see. She's been at yale for the last 2 nights for observation and we are bringing her home today. She's smiling and acting just like herself.

The drs don't really know what happened as her chest xray was clean but they suspect it might have been a semi/partial aspiration which closed off her already small airway.

Mommy and Daddy are going to stay up tonight with the nurse just in case until we get things back to "normal" around here. This just goes to show how fragile she still is and how we aren't in the clear yet.

It looks like her lungs are good but they had to put her tube back in and we are fine with balancing getting her off the feeding tube with the bigger goal of being off the vent in a month or so which will make things a bit safer but still dangerous until she can be off the trach completely.

More visitors!

The kids' great uncle and aunt and cousin came by today and even though it was a rainy day everyone played and had a good time with the kids! Sofia and Daniel got some books as a present too. Yay!

Happy Birthday Mommy!

Today is Mommy's birthday and to celebrate Sofia has been weaning more and more on the vent and she pulled her feeding tube out again!

Hopefully she'll keep eating well and it won't need to go back in.

And Grandmommy and Granddaddy are here for a few weeks to play with the kids!

Still working at it

Well after that last post Sofia hasn't been drinking that well and she's back to about half what she should be from the bottle. She's still improving though and we think we've found a nipple that works great but it'll still be some time.

She's still doing great and will back on weaning soon.

And Mommy and Daddy pulled a 24 hour shift due to hole and a nurse who called out sick. Yes we STILL don't have adequate nursing coverage.

In more news Grandma is off to China for 3 weeks so Grandmommy and Granddaddy re going to come soon to help out.

And the UPS guy continues to fail to do his job properly and ring our doorbell when we get packages. Another package was marked as "delivered" on Fri and never was. This moves beyond just annoyance to possibly jeopardizing Sofia as we have lots of medical packages coming through.

Here's a pic of Daniel with his aunt and uncle who were in this last weekend.

Sofia really improving!

Well since she came back from the hospital she's been doing amazing! She took 670ml of milk by mouth for the first time which is enough for her to stay off the feeding tube if she can keep it up. Looks like we found the magic bottle and technique!

She's also off her temporary meds and abuterol and oxygen and her heart rate has really come down too.

And she's happy and smiling!

Back to the hospital

Sofia really missed her nurses at the hospital and so she decided to spend last night there.

Ok it didn't quite go down like that.

She was having some difficulty breathing and after trying a lot of different things we ended up putting her on some higher oxygen so the Drs wanted to bring her in to check her out overnight. We packed everything up and brought her in to Yale around 4pm yesterday. And it worked out better for her to stay anyways since we had no nursing coverage last night.

They are planning on releasing her today. She might have a little virus but really isn't showing any symptoms, the xray is clear and she also is breathing easier.

They didn't know what she might have so she had to wear a mask for a bit yesterday... here she is, ready for anything!

Hearing Aids and Other Sofia News

Sofia got her new hearing aids yesterday, yay! We can already notice a difference in her responsiveness to our voices and she seems very happy. She also is off her diuretics now and we are really giving the bottle feeding a try. She is taking about half of what she needs and needs to take about 100ml more each day in order for us to keep her off the NG tube.

Yesterday was a big day for her so by the time we got back she was completely conked out! We are hoping that on Thurs when we check in with the docs she'll be up to a good level of feed, still growing, and then will be able to wean her vent even further, hopefully getting off of it sometime after the summer.

You can see her tiny little hearing aids (pink of course!) in this picture.

Daniel playing

With his kitty and with his and Sofia's new exersaucer!

Lots of updates...

Sofia is weaned down now to a rate of 13 an all new low and she is doing great so we will likely keep weaning further.

Sofia got a brand new vent featuring internal PEEP.

Grandpa came to visit today and spent time with the kids.



And the nursing situation is improving but we are still short a few night shifts each week which is still playing havoc. Mom and Dad were on 36 of the last 48 counting the currently running 12 where there is a new nurse that both we and the agency wanted us to cover with the nurse.

And Daniel has discovered his feet!



Here's Dad reading to Sofia:



Here's Daniel hanging out w/ Cookie Monster: Practicing his "Magnum" Pose: