Sunday, November 23, 2008

Still on cannula

Checking out my mobile

Sitting up and looking around

In the middle of a fit (I have a mental picture of this
happening not so far in the future, except he'll be throwing
himself down on the floor of the local toy store)
Resting with my Mommy
After my umpteenth fit of the day this was the only thing that workedRhys' new quilt from his great aunt... quite impressive
considering she'd never seen his nursery before
Rhys is still on the nasal cannula. They've even removed the vent from the bedside. His weekend primary nurse was there this weekend (hooray!), but I'm not sure we will be so lucky in the future. Rhys had an okay weekend. Yesterday he was having tummy troubles and I think he was feeling yucky from his vaccines because he was all kinds of fussy. Nothing we did would make the boy happy. His oxygen requirement was pretty high all day yesterday, but he calmed down after his bath, only to need more O2 early this morning. He was good until we got there and then he needed oxygen in the 70s and 80s most of today. I've noticed he has dropped his sats a couple of times without coming back up on his own. This isn't good, but I don't think it's unexpected. It is just a little disappointing since he wasn't really doing that on CPAP. They are pushing his pretty hard though, and he's come a long way.

The nurses he's had so far in the new pod all have made a huge deal about him dropping his oxygen saturation... it's been taken to a ridiculous level several times. This wouldn't be so concerning to me if he was going to remain on his current doctor team, but I think he's going to be moved at the end of the month. The problem to me is that a new nurse team AND a new doctor team could spell disaster for Rhys and staying on cannula. If these nurses keep having their mini-heart attacks when he desats they might "alert" the doctor team (comprised of newbies who don't know him from his neighbor) and give some sort of false urgency which could mean they put Rhys back on CPAP, or even worse the vent. Will this happen? No one knows, but it is a huge concern of mine. I voiced my thoughts to the charge nurse this weekend (who we've gotten to know and are friendly with). Hopefully we can work on it.

We're still hoping for Rhys to get a bottle tomorrow. We are going to call first thing in the morning to let the nurse know that if it happens we will be there to do it so don't start without us! Hopefully Rhys will be feeling (and acting) better and his doctor will give the okay.

Rhys' thyroid has been retested several times since the initial consult and everything is looking good. His levels are now within normal range, so I'm not sure if they will continue to monitor it or take this as a sign he is okay. Also, his eyes are still looking great, which is a miracle considering he has had several things that would drastically increase his chances for severe ROP. His follow-ups are now every two weeks and his veins are almost to zone 3 which is fantastic. The only other thing I can think of that he has to deal with are his hernias. He has a horrible groin hernia that hurts ME when I look it. I know any male (including Cody) is horrified when they see it. He also has a slight umbilical hernia. These both will have to be corrected, but the question is when. Not looking forward to that surgery... minor, but it still requires Rhys to be knocked out, which means he'd have to go back on the vent for the surgery.


Jodi said...

Love your new header! Those pictures of Rhys are adorable. You know, when Olivia was in the NICU, people would tell me how they cheered her on and celebrated each new milestone. Of course, we did too but it was hard to imagine strangers investing that much of their time and energy into my daughter. With Rhys, I think my husband and I are both experiencing what so many did with Olivia. We are so excited to watch his progress and often feel like cheering out loud. He's amazing! Thank you for sharing his story with us.

amyoutlaw said...

OK so cute quilt! The last pic of him on his tummy over your legs is like a fav. position of Max's and Julian's as well. Can't wait to hear about the bottle success!

bran1005 said...

Still cheering on lil man! He has come a long way. I love the pictures. Be sure to get a pic of the bottle feeding if it happens today (Monday).

Love Y'all,