| S | M | T | W | T | F | S |
|---|---|---|---|---|---|---|
| « Sep | ||||||
| 1 | ||||||
| 2 | 3 | 4 | 5 | 6 | 7 | 8 |
| 9 | 10 | 11 | 12 | 13 | 14 | 15 |
| 16 | 17 | 18 | 19 | 20 | 21 | 22 |
| 23 | 24 | 25 | 26 | 27 | 28 | 29 |
| 30 | ||||||
Chest XRay first. We saw Katie today. Katie reviewed her xray and said everything looked great. Dr. Iyer said we can stop giving her the Lasix. Katie removed her stitches (from all three chest tubes) and removed the steri strips.
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:
First night home was tough: Olivia was extremely fussy and cried more that night than she has her entire life.
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.
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.
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 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.
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
Surgery is November 16th.
We had to have a chest xray before our appt with the surgeon. Olivia HATES these as we have to hold her down and hold her arms over her head - she very much dislikes her arms being messed with.
That over with, we were handed her entire xray history file to bring upstairs. That was cool because it contained all the xrays from her upper gi when they determined she had gut malrotation. So I was able to show Arnie the pics while we waited.
I once again recognized a million staff members while we’re waiting for Dr. Mello - including the resident who took care of Olivia when she first came out of her first surgery. She recognized us and came over to say hi.
Katie is Dr. Mello’s new Physician Assistant. Turns out she interviewed for the job the day Olivia had her first heart surgery. I love connections like that.
She ooh’ed and aah’ed over Miss Olivia (of course ;)). Listened to her lungs, heart, etc. Olivia weighed in at 11 lbs, 11 oz
We discussed the surgery with Katie and Dr. Mello:
Surgery takes about 4 hours. She’ll be the first case of the day and we’ll probably have to be at the hospital at 6:30AM.
The BT Shunt will be removed and then he’ll connect her SVC to her Pulmonary Artery (skin to skin).
Recover time is usually 7 - 10 days. She’ll be in the PICU for about 4 days before we’re sent up to the 8th floor.
Olivia will have 2 chest tubes (one more than last time). One chest tube will be just a drain. The other will have a pacer wire and another wire. While these tubes are in we won’t be able to hold her :(.
All lines will be removed before we can go upstairs.
They will wean her off the ventilator after a few days - give her a few days to adjust to the new blood flow.
Her oxygen levels will be in the 80’s after surgery.
She will have some swelling in her head and face for a few days and they’ll have her on lasix again to help her get rid of the extra fluid.
Dr. Mello mentioned we should increase her aspirin intake from 1/2 tablet to 5/8 tablet.
Now on to the bloodwork: What a freaking NIGHTMARE! Olivia hated the tourniquet and screamed the entire time. It was just terrible … definitely my worst experience in that hospital. The women were not very sympathetic to Olivia either. I will definitely be writing a letter to complain. They also needed to take a urine sample so they put a bag on her. That was just an experience I’d rather not have to go through again.
Arnie got a call yesterday from Alison from Interim Healthcare regarding the scheduling of Olivia’s next RSV shot. They wanted to do this on November 15th. Arnie mentioned that Olivia was scheduled to have surgery the next day (possibly) but if that was ok with them it was ok with us.
Alison called back this morning to say that Dr. Mello’s office says No vaccines for four weeks before or after surgery :huh. We are scheduled to go into Dr. Friedman’s office next week for her 4 month checkup.
So I called Dr. Mello’s office and questioned this – as Olivia had her hepatitis B vaccine one week after surgery last time. Apparently they will evaluate her recovery and she can have her vaccines after he gives the green light.
I then called Dr. Friedman’s office and talked to them about it. Dr. Friedman is going to call Dr. Mello’s office to see if they can put the RSV shot in her IV after surgery. I requested that we KEEP next week’s appointment as a pre-Operative appointment / weight check. They moved our appointment to 9:15AM so we’ll get in a room before any of the “sickies” get in.
This stuff just makes my head spin.
Arnie just talked to Maria at Dr. Mello’s office.
We are on the schedule for her Glenn for two dates: November 16th and November 22nd.
November 16th is a tentative date as they have another child who may need surgery that date. We are definitely on the schedule for the 22nd though.
We will need to take Olivia in for a chest X-ray and bloodwork most likely November 12th.
They will confirm the date by the end of this week.
