OK – I just talked to someone who told me to update again

Continue reading →

Olivia had a rough couple of hours this afternoon. She decided on her own that she wanted the foli cath (urine) out so that was removed around 6pm. We had a nurse from 3:30 – 7PM who needs a little interpersonal skill retraining. First nurse in 4 years like that but the timing was rough. We’ll leave it at that but my mom walked out to see my dad after visiting Olivia and said to him “I am SO glad Tom is on tonight because I do NOT LIKE that woman!”

Olivia got to sit up in my arms this afternoon. Sheer heaven for me, but she was uncomfy I think. Add a dose of potassium via IV and she was REALLY having a tough time. The potassium burns when it goes in and she was FLIPPING out. It broke my heart to see her like that.

She napped for a good long while this evening after the excitement of the potassium and is just waking up and looking pretty good. With Tom on the job we know she’ll have a great evening and all is well.

You’ll hear from me in the morning… Thanks to all for your comments and for reading. They mean the world to all of us.

We have two less wires!!!

Dr. Mello came in and removed two of her heart lines – the one going to the Fontan and the other that was in her heart measuring her heart pressures. Olivia did AWESOME and it’s a great start to getting out of this joint.

He also said she can start EATING “anything she wants”!!! Watch out cafeteria … Olivia is going to start EATING!

She’s doing awesome and we’re well on our way.

A slight change in the plan: Dr. Mello was contacted and he wants to wait until tomorrow to pull the chest tubes. Because she’s on lasix, he’d feel better not pulling them today since she is still draining a bit.

He’s going to be back in Htfd later today (he’s at Yale operating this morning) so he’ll stop in later to check on her and possibly pull the chest wires / ivs later.

Olivia is resting very comfortably right now. Maribel (our nurse) reduced her oxygen to 3 liters (down from 3.5) and Olivia is holding steady at 98% on her O2 sats. Also her respirations are fantastic at 32 – 35 breaths per minute which is SO much better than the 65 – 70s we were seeing yesterday (she was panting more than taking deep breaths). Blowing bubbles has definitely helped her out.

More information as we know it later today!

Early rounds today … so early that Arnie missed them!

Hopefully today will be a good day. They’re going to get a hold of Dr. Mello about possibly pulling TWO of the three chest tubes (wahoo) and possibly the IV going into her heart. Once they hear from him we’ll probably be able to feed her some real food which will make her happy I think.

They’re going to start her back up on enalapril today and depending on Dr. Mello – we may or may not start the coumadin today. She is already getting an antibiotic because of the chest tubes.

She’s resting now (lightly snoring ) after getting some morphine and attavan as she was getting a bit fussy. More updates later!

Good morning!

I just popped in the room to check on Olivia before I shower. She looked AMAZINGLY wonderful and she was OLIVIA. When she opened her eyes she was all Olivia and not drugged at all.

Tom said her night was good. She ate two popsicles and had some juice. She watched Garfield as well. That’s what I love about Tom – he went into her stash of videos to pick out a new movie for her to watch as opposed to just leaving whatever was in the player on.

So I’m off to shower and get dressed for the day and then I’ll update again later on this morning. I’m hopeful today is the day she decides to breathe right and we can start getting some of these tubes out of her so we can start the process of going HOME.

I want to start this off by saying for our new readers that Olivia is the kid who never had a setback or a complication. She’s the kid that proves everyone wrong all the time.

Until this time …

We had a GREAT day … a very good day. She was stable all day. Slept well. Woke up and played with us.

Then around 7PM she decided I was too relaxed and it was time to kick things up a notch. She started crying. Asked me to pick her up — I would PAY to be able to but with the multiple chest tubes plus an IV going into her heart … it’s just not possible. She just wouldn’t settle down. Said she was going to throw up. We’re of course at the point where the nurses are switching shifts so it’s a bit harder to find someone.

We find someone who helps us out. Finds our nurse who brings in her replacement who is TOM. Tom is the nurse who took care of Olivia after her shunt 3+ years ago. He’s AWESOME and I’m so glad he’s on tonight.

He takes her temp: 102.1. Gives her tylenol. He figures out a way to calm her down. He notices a rash developing that I had noticed just moments earlier. He immediately gets the drs involved. We’re in good hands tonight.

They gave her motrin as well. Her breathing is coming down a bit. She’s on a LOT of oxygen right now. Her coloring isn’t great. They think it’s related to the fever so we’re going to see how she does.

She’s stable. Me? I’m having my moments where I am and then I’m not. I’m scared – I’m SO not used to her being like this.

We’re having a pretty good afternoon. They did another chest xray because her breathing has been labored. Turns out her chest is fine – but she has a belly full of gas. So we’re hoping she can pass that quickly and feel better.

They gave her another dose of lasix and turned up her Oxygen to help her not have to work so hard.

She had some more juice and then another popsicle. She’s been cute this afternoon … she told me she wants to be a ballerina when she grows up and she will wear underwear on her head at her coming home party. So we’re seeing a little personality shining through. Even the eyebrows are making a comeback as she’s using them to show expression again.

She is working hard at blowing bubbles … we spent a good ten minutes doing that this afternoon. Now she’s resting again although she just woke up in a start and started singing along with the TV “Backyardigans” theme. It was adorable!!! She keeps pulling off the oxygen to smell rahrah and then putting the oxygen back on.

So “no news is good news”. Dr. Heller will be stopping by later today and I’m looking forward to seeing her. She always knows what to say to make us feel better.