Update # 2 for March 26

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!

Update # 1 for March 26

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.

Update # 4 for March 25

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.

Update # 3 for March 25

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.

back home where we belong

Olivia was released on Monday afternoon.

Tuesday we saw Dr. Friedman for a followup. Olivia lost 5 oz since her 9 month checkup. The previous weight was incorrect. Dr. Friedman believes that Olivia has a “sore throat virus” along with a tummy bug. She gave us the green light to travel though.

Olivia is feeling better but is still not 100% herself. She is clingy and scared of strangers. She seems to be throwing up once every other day. We’re hoping she’ll start feeling more like herself soon as it’s been almost a week that she’s been sick.

Next update will be after 5/20/05 since we’re headed to the Happiest Celebration On Earth! ºoº

How my first mother's day with Olivia was spent

Well, that was NOT how I wanted to spend my Mother’s day.

Things started to happen on Saturday. Olivia ate a great breakfast and seemed to be in fine spirits. We ran to the mall after gymnastics for a few things and Olivia had a jar of sweet potatoes there. On the way home Maddie Rose started yelling that Olivia was getting sick. Sure enough, the entire jar had come up.

Thinking this was a fluke thing and not wanting to ruin Arnie’s mom’s mother’s day celebration, I decided last minute to take Olivia. I was going to stay home with her while Arnie and Maddie went but I felt bad that Jean wouldn’t be with both her girls.

Olivia slept through most of the dinner in my arms. We got to Arnie’s parents house and after Olivia took a bottle it came right back up! Arnie’s aunt Mary Anne noticed that Olivia was warm so we took her temp (102º via ear thermometer). I was getting nervous at this point and we decided to head home.

Olivia had a bottle of pedialyte before bed and slept well. She woke up at 4:30AM and Arnie gave her some pedialyte and checking her temp (100.5 via ear thermometer). Gave her some tylenol and she went back to sleep until 7AM. At 7AM I took her temp again (103.8 rectally). We paged the pediatrician and waited. Gave Olivia tylenol at 8:15AM

We ended up calling back the pediatrician after no response within an hour and he called us back. After hearing she was a “cardiac” kid with no spleen, the doc on call immediately suggested we head to CCMC’s emergency room. We thought this was a good idea so we dropped Maddie off at my parents and headed up there.

Thankfully the ER was dead so they took us right away. Olivia weighed 18 lbs, 14.5 oz fully dressed (with a sweatshirt on). Her lungs were clear. They did a chest xray to rule out heart failure and also pneumonia. Then came the fun part: Since Olivia has no spleen they are immediately concerned about encapsulated bacteria that she cannot fight. So they wanted to start an IV to give her IV antibiotics and get a current blood count (CBC). They started at 10:30AM. After 8 attempts and 4 different nurses they FINALLY got an IV in at 12:30PM. She ended up getting the antibiotics as two shots in her legs because they didn’t want to wait for the IV to get started. Apparently it’s very common for heart children to have “bad” veins. Poor princess was beyond exhausted at this point.

Now the waiting game for the results for the CBC. We were told that the pediatrician on call for our practice wanted Olivia admitted overnight to keep an eye on her. Finally around 2:30 they told us her white cell count was 15 (anything 5-15 is considered “normal”). We finally moved up to a room on the 7th floor at 3:30pm.

Arnie stayed with Olivia last night. She was able to keep down everything yesterday (mostly pedialyte and then later in the day milk). Olivia slept well and this morning her fever was gone! She is playing and acting like herself.

Now we’re just waiting to hear back on the culture results for the encapsulated bacteria. The first doctor Arnie saw today said they would most likely keep her another night to wait for the 48 hour results but we’re hoping our pediatrician says to send her home. In our opinion she could end up with something worse by staying there and being exposed to all those germs.

I will update again later today as more information is known.

Day 4 – going home!

Dr. Mello stopped in.  Olivia can go home today as long as the cardiologist on call approves it.  Olivia will be on Captopril forever.  Dr. Salazar was on call and said we can go home :)

Kathy was nurse.

Meds we’re going home on:

  • Aspirin 40 mg daily
  • Poly-Vi-Sol 1ml daily (OTC vitamin)
  • Captopril 0.5 mg 3x a day
  • Lasix 5 mg daily
  • Zantac 13.5 mg 2x a day
  • Amoxicillan 50 mg 2 x a day

First night home was tough:  Olivia was extremely fussy and cried more that night than she has her entire life.

PICU day 2

Olivia had a very quiet night. Desiree gave her a bath.  She is resting well and very peaceful.  She ate well.

The atrium line and the last tube will be removed on 11/19.

Katie removed the 2 chest tubes and the pacer wires out at 9AM.

Jenna and Kerry Olivia’s nurses today

The plan for today:

Lasix 2x a day
Miliralone – stopping

Capriprol 3 x a day

Dr. Heller stopped by:  Olivia is a “stellar patient”. She “knew she’d do well. She could teach other patients some tricks!”  Said we’d be home by Saturday.

Jake (resident) stopped by.  Ran a test to determine her bleeding time and it came back “elevated”.  Going to give her Vitamin K shot and investigating liver function and checking certain clotting factors.

Second test shows levels still off. Keeping an eye on it.  May have hemotology check her in the morning.

Olivia was a smiley girl tonight and was definitely feeling better :)

Andrea (resident) on call tonight. Desiree night nurse again.

Surgery update

Olivia Update:

Hi All. Sorry I’ve been MIA but such is life in the PICU. (typing this from memory so more details will be provided when we’re home and I can refer to my notes).

Olivia’s surgery was a success. She did great. Her oxygen levels are now in the 80’s – before surgery she dipped into the 50’s so doing the surgery was definitely the right decision.

She had a very rough night last night – they gave her sedation meds that would knock an adult on their behinds … and she was still awake. Poor pumpkin did NOT like the vent and I can’t say I blame her.

They removed the vent this afternoon around 1:30pm. She had her first bottle around 8pm and took almost 5 oz. She’s like a new woman with the vent gone.

She had to be given some blood this afternoon and she’s very pink and rosy.

Dr. Lapik (pediatric cardiologist) is on call tonight – he said that Olivia’s chest tubes (she has three) will be removed tomorrow. We may move up to the 8th floor tomorrow and possibly be home by Friday!

The PICU is hopping this week with Heart kids. There are 5 of them currently in the PICU and up on the 8th floor. I’ve talked to one of the mom’s and we plan on having breakfast together in the morning. It’s amazing how this has allowed us to connect.

Well, that’s all for tonight. I’m going to head to bed and hopefully Olivia’s night is smooth sailing.

We’ll be in touch again soon.

Tricia, Arnie, Maddie and the new and improved Olivia

First full day in the PICU

First full day in PICU.

Got a call from Desiree at 5AM. Olivia would not settle down so they wanted me to try and calm her. They had given her enough sedation meds to knock out an adult yet it did nothing for her.  There were 5 heart kids on the floor and they were all wild that night.  I walked into PICU to find Jake (resident) attempting to comfort my poor Princess. I was unable to hold her but put one hand under her bottom and the other on her head and just whispered to her attemping to comfort her.

Her BP went up during the night so they started her on hypertension meds.

For rounds today the plan is the following:

Extubate her from the vent today.
back off the hypertension meds.
She’s gotten 3 calcium and one potassium doses.
She will be getting a blood transfusion (80 ml – 15 mg / kg).

She is still on the Fentinal drip, but the dose will be cut in half.

Kathy is the day nurse and Kerry is helping out.

Olivia is extubated at 1:30pm. The FIRST thing I did was kiss those sweet lips.

Dr. Lapik was cardiologist on call. Said we *might* be released as early as Friday!

Claire took over for Kathy around 4pm.

Desiree night nurse. Laura (resident) on call.