Such a strong little girl!

Here is today's update from my friend:

Olivia has had another great night and a great day so far! She is off oxygen and now her face is free of all tapes and tubes! Her middle chest tube came out this morning as well. She's moving right along and amazing everyone. Her pacer wires also came out this morning. Today will probably mark the day we leave ICU and go right down the hall to the heart unit.
I stepped out of her room briefly to eat lunch and figured I'd update her carepage. Going back in there now. Will update later.

Olivia - update

Olivia was extubated around 5pm. It was really rough for a while. She was still so sedated that she wasn't breathing on her own. We had to keep yelling her name and stimulating her to get her to breath. It was really scary. The Intensivist came in to monitor the situation and said that even though she wasn't breathing on her own, when she hit a certain oxygen saturation (like in the low 80's) her brain finally kicked in and told her body to take a breath. That happened for him one time and then she has been breathing fine ever since.
She's had her dressing changed and was given an antibacterial bath to try to help prevent blood infections. She has pacer wires connected to her heart since surgery and those might come out tomorrow. Those are in place in case she has any heart arythmia's or anything that requires a pace maker.

Her blood work came back and showed that the bleeding that was found in her foley cathetar was not from her kidneys. It was trauma related from when they inserted the tube so that was good news.

Her chest tubes are draining a fair amount. It's decreasing but not as much as I earlier thought.

Please pray that she has an uneventful night and continues to breathe well on her own

Go Olivia Go!!!

Trying it again...

Posted 37 minutes ago

They are trying to ween Olivia from the vent again today. Hopefully she does well this time around! She is now breathing around the vent tube so that's a great sign that her swelling went down. She is super, super hard to sedate and they are giving her almost the max amounts of sedation meds and that is still only keeping her calm for 20 minutes then she's thrashing around again. Poor thing.

When her surgeon rounded this morning he said her heart/lung pressures are "phenomenal"! I LOVE hearing that...especially from her surgeon! Her chest tube drainage has been so minimal that they might be able to pull her chest tubes out over the next couple of days. That's the one thing that they said could keep us here a long time and she's doing going great in that regard. It would be amazing if we were out of here closer to the 10 day to two week time frame!

They are preparing her for extubation now so we have to leave her room. I'll update again later.

Olivia - update

More detailed explanation

Posted 5 hours ago

So here's more details as to whats happened yesterday and today. Yesterday all was well. Her blood gases looked great, she had been breathing above the vent since she was in PICU, heart rate and oxygen saturations were awesome, so they felt it was ok to extubate. They did this around 10pm or so and after she was extubated it was clear she had swelling in her airway. Because of the swelling, she couldn't breathe off the correct amount of carbon dioxide. Her ph levels dropped and her co2 levels were quite elevated which meant she became acidotic. The last time she was acidotic she had her two codes so they took this as an emergency, which it was.
The whole night she was thrashing around and in a lot of pain. There were certain pain meds she could not be given because they effect her ability to breathe on her own. They tried several breathing treatments and something called a high flow nasal cannula (oxgen tube in nose) but when nothing was helping her breathe they had to reintubate this morning.
She is being given steroids for 24 hours prior to them trying to extubate again. She has to stay calm and still in order for the swelling to go down so they have kept her under sedation and paralyzed all day. They will try to ween her tomorrow from the vent as long as everything goes well.
She had a wire that was reading pressures in her heart and lungs and they removed that today. It was stitched so they removed the stitches then pulled the wire. They had to keep her under close obervation for one hour becaause problems can arise where they need to take her back to the OR but she was fine.
They started feeding her pediasure via NG tube so I'm sure her tummy is happy about that :) Thanks again for your kind messages on her carepage. I read every single one and they keep me going so thank you.

Olivia - update #4

Surgery almost done

Posted 41 minutes ago

Olivia's surgeon just came out and said that he was done with his portion of surgery and that they are just finishing up in the OR!!! He said surgery went perfect and that her oxygen saturation level is at 100%!!!!! I cannot express how wonderful that news is since she has had a level of 70-80's since birth. Now all of her organs and the rest of her body is getting the right amount of oxygenated blood to funtion at their fullest. I have such relief that I feel like I could cry for a solid hour, tears of joy and relief that the surgery part is almost over. We made it through 4 surgeries and now finally that part is over.
We are going by the elevators to see her before she goes up to the room shortly and then it will take 1 or 1 1/2 hours for them to get her situated before we can see her.
Thank you again for all of your kind thoughts and prayers today. I'll update again later.
Love you,
Rox
p.s.
We did get a room at the McDonald House. Ironically, it's one we've stayed in twice before :)

Olivia - update #3

OFF BYPASS!!!!!!!

Posted 3 minutes ago

The nurse just came out and said Olivia is off of bypass!!!!! Music to my ears! I could finally let out a big sigh of relief. Now they are doing another echo via scope down the mouth to make sure the surgery was a success then she'll be closed up and brought up to ICU. They anticipate surgery will last another hour or so but that's good news to me because that means it's ending about 45 minutes sooner than I anticipated.
As if that wasn't enough good news, I think we just got a room at the McDonald House!!! my sister just went over there so hopefully she heard the lady right on the phone!
Thank you for all of you loving thoughts and prayers. Can't wait to see our little angel and I'll be updating again after surgery is over.