Cardiologist appt.

Olivia looks “amazing”.  “If only all the babies could look this good”.

Olivia weighs 12 lbs, 6 oz and is 24″ long.

Her oxygen level:  86%!!!

The blood is flowing beautifully (“just right”) through her SVC – no blockage.

Dr. Friedman had been on Dr. Heller every day Olivia was in the hospital to ask if Olivia had gotten her synagis shot yet. It’s nice to know Dr. Friedman was thinking about her daily.

No need to go back until January 31 :)

Visiting Nurse appt / Update

We’re home and recovering. This trip to the hospital took a LOT out of me. Olivia is doing great and is mostly her happy go lucky self.  We’re unsure if she’s got the classic “Glenn” headaches but if we keep her on the Tylenol every four hours everyone is happy.

Yesterday we had our first VNA visit. Olivia weighed in at 11lbs, 12 oz which is only a 3 oz weight loss. Not too shabby!

Our next visit will be Wednesday at 9AM.

We see Dr. Heller on Monday, November 29 at 10AM.

I called Dr. Friedman’s office this morning to let them know we were home. Dr. Friedman didn’t believe the nurse when she told her so she had to call herself to verify!! She was amazed at how quickly we were home :)

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.

Day 3 in the PICU / Happy 4 month birthday Miss O

Clotting issue seemed to have corrected itself with the vitamin K shot.  Dr. Mello removed the RA line.  The last chest tube will be removed later today.

Diane and Kerry were nurses today.

Her arterial line was removed at 8:30AM.  They took her off oxygen as well.

Got her synagis shot around noon time.  Decided to send her home on vitamins to handle vitamin K deficiency.

Around 2pm we were sent to the 7th floor.  Cheryl was our nurse.

Quiet afternoon / evening. Olivia seems to be developing a cold and was suctioned a few times.

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.

Glenn surgery notes

Bidirectional Glenn Surgery

We arrived at 6:30AM.  Fran was our nurse.  Olivia’s Oxygen sats were 66%. Pulse was 149 and BP was 90/31.

Anesthesia was Tony Fernandez and Betsy (RN)

Betsy took Olivia down at 7:50AM.  We were told surgery would be around 5 hours.  They set us up in the Family Suites (the NEW new ones) which helped pass the time.  At 1:20PM Arnie went to find out what the situation was: they were closing her up so it wouldn’t be much longer.  At 2pm, Melissa (nurse from PICU) came and got us – Olivia was back :)

Jenna was Olivia’s nurse and Jake was the resident on call.

We talked to Katie (Dr. Mello’s PA) and got the scoop:

Olivia was on heart / lung bypass for about 80 minutes. They didn’t stop her heart, just slowed her down.  They did not need to make her “cold” which was such a relief for both of us.They removed the shunt while in there.  Prior to surgery Olivia’s sats dropped to the 50’s so we had surgery at the right time.

Her oxygen should not be under 75%.

At 2:45pm her vitals:

HR 151
BP 86/42
Oxygen: 77
Resp: 30 (breathing over the ventilator).

Her Meds:
Dopamine – heart
Milirinone – heart
Fentinal – sedation and pain
Adavan – sedation
Zantac
Anceph – antibiotic

Her calcuim and potassium was low so they gave her both.

She was given vecuronium to cause temporary paralysis so they could retape the vent tube.

Her BP was low and so they gave her Albumin to increase her blood volume.

At 4:10PM she had a temp of 101º.  At 4:55pm she had a temp of 100.7 º so they gave her tylenol.

Dr. Heller was on call and ordered a fentinal drip as Olivia would not settle down, she was very restless on the vent.

Desiree was our night nurse.

At 9:30PM vitals:

HR 148
Oxygen 79
Resp: 25

4 month checkup

Olivia weighed in 11lbs, 15 oz this morning. She is 24.5″ long and her head was 40.5cm

Dr. Friedman didn’t agree with the “no vaccines” comment by Dr. Mello so while we were in the office she called his office. After she talked to both Katie and Dr. Ayer they agreed to let Arnie and I decide whether or not to give them to her today or to wait. Dr. Mello’s office was concerned that Olivia would get a fever and we’d have to postpone surgery.  Dr. Friedman is concerned that Olivia could catch something due to her lack of spleen.

Arnie and I decided to have her shots done today. She will get her Synagis shot in the hospital.

Dr. Friedman gave us the greenlight to start Olivia on solids. We can give her rice, oat and barley cereal and any / all stage 1 fruits and veggies.  We gave her some oatmeal and applesauce this afternoon. She wasn’t thrilled with nor did she hate it.  We’ll keep trying …