[devildogwife]

We don't have an exact date yet. He's going to the cath lab in 2 or 3 weeks and getting his heart cathed. Then, the Bi Directional Glenn is scheduled, depending on how the cath looks. It will be in April for sure. But today, his echo looked good and he sounded good. His sats dropped really low last week (like 63 eek!), but he's back up to low 70's now. I'm scared, but ready for the Glenn. I just can't believe how far he is come and how well he has done.

[devildogwife]

Tweety-I have another suggestion for you that I just remembered. When your daughter is in the hospital and not in a hospital gown, you may want to have her in some kind of onesie that snaps up. I don't recommend anything that zips, as the kiddos have a lot of monitors on them, especially their chest and feet. This way, they can still be warm and covered and it's easy to fix the probes if they slip, without having to totally undress them. Make sense? It's much easier to unsnap and take out a foot.

[tweetybirdus]

Thanks for the suggestions and advice.

We have our pre-op appt today at 1:30. I hope she isn't cranky. She was so cranky yesterday, teeth. She's getting all 4 canines, no other teeth though.

[devildogwife]

Tweety I was just thinking about you, remembering how close you're getting. Let us know how today goes. I've had a very cranky baby too lately. Hang in there.

Cameron is going to the cath lab a week from Friday, and I think they'll schedule his 2nd stage in less than a month.

[athikers]

I second the suggestion for a onesie that snaps. Our little man always has three cords coming off of him and pj's with snaps are a MUST. This provides us access to his O2 probe, his g-tube site and his O2 tubing. Perfect!

How'd it go today?

[tweetybirdus]

As well as it could be with a baby with white coat syndrome. It seems like she screams the minute she sees someone in a white coat or scrubs. poor thing. She was exhausted. We're exhausted, but everything looks good for the surgery.

[SuzBerg]

I hate to tell you this BUT they do not outgrow the "white coat syndrome". My Emi (age 6) has a very, very hard time with anybody in a white coats or scrubs She will give the wearer a dirty look, stick out her tongue and spit (raspberries - adorable NOT), pretend to be a dog, put her fingers in her ears etc. I have just learned that it is her way of coping and try to explain it ahead of time so the nurse, doc, etc are prepared.

Good Luck with everything Tweety. We will be thinking of you.

[devildogwife]

Tweety, I know your DD's surgery is tomorrow. Know that we'll be thinking of and praying for all of you.

[athikers]

Teeter cries the middle we pull up to the hospital parking lot... its tough for these kids.

Good luck tomorrow!

[tweetybirdus]

They moved the Surgery to Tuesday, had an emergency case come up. Everything is still the same, just the day has changed.

[SuzBerg]

Tweety - sending good thoughts, hugs and prayers your way for tomorrow. Please keep us posted when/if you get a chance!

[devildogwife]

Thinking of you today tweety.

[tweetybirdus]

She was discharged today. Her surgery on Tuesday went well. She was doing
pretty good, but they noticed something wasn't quite right when they did an
ultrasound of her heart afterwards. Also the alarms on her monitor were
going off every couple seconds. She also wasn't making enough blood so they
gave her a transfusion. They had to remove her ventilator tube before they
wanted to because it was too small and she was desatting (her oxygen levels
kept dropping). They couldn't keep her as medicated without the ventilator
so she had some pain management issues.

There was a 2nd hole in her heart that was smaller than the first one and
that made it difficult to see. So, they took her back into surgery on
Thursday to repair the second hole and remove excess muscle tissue in her
right ventricle. When she came out of that surgery, she had a larger
ventilator tube and was doing well. They kept her sedated longer and could
give more pain meds. Her alarms weren't going off that much either. She was
in the PICU until Monday morning when was moved to the IMCU and then
discharged this afternoon.

We've been in Norfolk the whole time. Just got home a little while ago, got
her to sleep and had some dinner. I probably won't stay up too much later. I
can't wait to sleep in my own bed. We're exhausted, physically and
emotionally.