Followup xray appt

Olivia had a followup xray done this morning. She sat nicely for the xray and Arnie said she did awesome. They then went up to see Katie with the report. Due to the reduced fluid in Olivia’s chest, we can go back to 2x a day Lasix. According to Katie, there’s a “tiny bit of fluid left” so we’re in better shape than last Friday. It helps that Olivia has been running around all week at Memere’s. Katie also listened to Olivia’s lungs and everything was clear :)

Arnie had Katie take a look at the spot where the left chest tube had been. It is a bit pink and “ugly”. I wanted to make sure she took a look. Katie wasn’t too concerned about it but gave us an RX for Keflex in case it turns red and angry. We won’t fill it unless things change.

So we’re all set for two weeks until we see Dr. Heller on April 22.

Followup Appt today

We had our first post surgical appt today. We had to go in and have a chest xray done, then meet with Katie. Finally we went to the lab for a blood draw.

Olivia is doing great. Katie was pleased with her xray – there is still a bit of haziness in the bottom of her left chest area which could just be the tiniest bit of fluid or maybe her lung hasn’t fully expanded from surgery, etc. We’re just going to keep an eye on it.

Katie removed two out of three of her chest tube stitches. The left one is still in and they’ll remove it on Tuesday when we go see Dr. Heller.

We weighed her while there and she weighed in at 15.6 kg – gaining weight in the hospital! Wow! The xray was uneventful now that they allow her to sit or stand for it. Bloodwork – Katie put the EMLA cream on her ahead of time. Olivia just cried because she knew it was a blood draw and she didn’t want it to be done.

Katie called later in the day to let me know her INR level (clotting) was 1.92. Which is exactly where they want her to be. So we’re to continue with the 2mg coumodin.

Now a question for all the heart moms out there. Olivia HATES the coumodin. They do not compound it so it’s in a pill form. I need to crush it up, then mix it in something. Olivia gags on it regardless of what we put it in. We’ve done yogurt, pudding, apple juice. HATE.

Tonight she threw up ALL her meds while we were giving her the coumodin mixed in pudding. We had to call in to cardiology to find out if we should re-administer all the meds she had previously taken. Dr. Lapuk called and told us to not give her everything and to start fresh in the AM.

Suggestions on getting her to take this stuff? It’s going to be a LONG three months if we cannot figure out a solution to this…

18 days until D-Day

We have a date. March 24. Day after Easter. March 24.

I called Maria today because I hadn’t heard from her and I know she works part time. She answered and we scheduled the surgery.

We go see Dr. Mello (surgeon) on Monday, March 10 at 3pm to see him, get blood work done and a chest x-ray (oh, I’m SO looking forward to that — NOT). We played a game tonight where I put her on the kitchen table and I’d give her a candy every time she’d let go of me. It didn’t go far because she was FREAKING out :( I’m just praying they’ll do the xray standing up because otherwise I don’t know how we’re going to be able to do it otherwise. Or I’ll have to wait outside the room with Maddie.

Speaking of Maddie, we have an appointment with Child Life for another tour along with a showing of the icu room for Olivia. I explained how Maddie is having a hard time with everything so they’ll help us with that as well. The tour is at 2PM and it’ll be me and the girls as Arnie isn’t able to get to the appt until 3:30pm.

I’m just so worried about my Maddie – she’s going to have such a hard time with it all. Thankfully she’ll be with my mom that day as I know she’ll be able to distract her all day. Maddie doesn’t have school that day and in a way I’m relieved because I know she wouldn’t be focused at school.

March 24. 18 days until we’re on the other side of it all. We’ll finally be past it all and we can move on with our lives. 18 days until we’re past something we waited 4+ years for.

Surgical consult for glenn

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.

Notes from appointment with Dr. Mello (pediatric cardiac surgeon at CCMC)

We met with Dr. Dennis Mello and Scott Callahan (Physician Assistant)

Dr. Mello and Dr. Kopf are the only pediatric cardiac surgeons in Connecticut. So any child with a heart defect operated on in Connecticut is done by these two doctors. They operate TOGETHER on every patient. They operate on approximately 300 patients a year. There are NO residents who will be operating on Olivia. Normally they operate in Hartford on Monday and Tuesday and at Yale on Wednesday and Thursday. Friday is a “swing day”.

He has never lost a patient from the Glenn or Fontan procedure.

Currently, the version of the Fontan procedure he does is newer than the one done in Boston.

They will schedule the Glenn for “earlier” than “later”. The Glenn is redirecting the returning blood from above the diaphram and the Fontan is for the returning blood from below the diaphram

Dr Mello operates daily using the Heart / Lung machine.

I asked about abnormalities in the pulmonary veins – how serious this would be. He said that there is a 2/3 mortality rate with the vein defect in conjunction with single ventricle disease. But he felt it would be worth taking the chance in having surgery if she does have this defect as well.

For the first step: They need to balance the pulmonary blood flow. Done around one week of age.
There are three scenerios

A) Too much blood going to the lungs and not enough to the body.
B) Too little going to the lungs and too much going to the body.
C) Equal amounts going both places.To fix:

A) Bend the pulmonary artery
B) Perform a “BT Shunt” which is the gortex or plastic tubing to connect the aorta to the pulmonary artery.
C) Do nothing – no surgery.

Second Step: Done anywhere from 4-6 months to a year old. Based on oxygen levels. He likes to do this surgery earlier than later.
Bidrectional Glenn Surgery or Cavopulmonary Shunt. Takes the returning blood from the upper half of the body and sends it directly to the lungs. Oxygen levels after this surgery are 85%.

Third Step: Fontan procedure Done at 3 years and at least 30-35 lbs. Will wait to make sure at least 35 lbs so they can connect an adult sized conduit. Disconnects the lower blood flow and connect to the pulmonary arteries. The Conduit is made out of gortex. Boston and Philadelphia are still doing the old style Fontan.

Side effect of the Fontan can be Protein Losing Enteropathy. Very serious but rare.

Dr. Mello has been operating at CCMC for 5 years.

Survival rates for the BT Shunt is 90-95%. The other surgeries ar ethe same.

The surgeries only takes a couple hours each but to a parent, it will be a half day.

Blood donation is an option but most people use the blood bank as the donated blood is screened the same.

Not necessary to donate cord blood.

God Forbid, if Olivia needed a heart transplant – he would recommend Columbia NY because they do the most.

Length of stay per surgery: 7-10 days per each. Length will be shorter as they get older.

He prefers the kids stay in the NICU or PICU until discharge as they have 1-1 monitoring.