Everything you never wanted to know about heart disease!

So....where to start where to start....
When I was pregnant with my 11 year old daughter, Allie, the doctor's at my regional NH hospital found, in a routine ultrasound, that they couldn't see the chambers of her heart easily. So they sent me to Boston for a level 2 ultrasound. They said that they found 'something' and sent me across the street to Boston Children's Hosptial for a fetal echocardiogram. I was 19 years old and 16.5 weeks pregnant.
5 hours later, they found and identified congenital heart disease in Allison. More specifically, they had it narrowed down to one of two different types of heart disease. Either it was Transposition of the Arteries...apparently that is when everything heart related is reversed....or it was Tetralogy of Fallot, which sounded so much worse. Tetra-meaning 4. FOUR defects. Pulmonary Stenosis, Overriding Aorta, Ventricular Septal Defect (hole), Right Ventricular Hypertrophy.Wouldn't you know it. Allie ended up with Tetralogy.
At her c-sectioned birth, she was 5lbs 4oz. 15 inches long. And I was 20 years old. I got to take her home after one week....back to my parent's house. I had given up my apartment and my single living because there was no way I could care for Allie on my own. She was this teeny tiny fragile child....and I was a child too. I learned everything I could about congenital heart disease. My insurance allowed for a nurse to be with us. Our first nurse dropped the ball....big time. Allie was displaying signs of distress at home and I was concerned but this nurse compared Allie to her other cardiac cases and brushed off our concerns, even calling me an "over-reactive mom". Well...that was my first introduction to the term....to be echoed throughout Allie's life thus far. Had that nurse actually listened to me, perhaps Allie wouldn't have ended up in the ER that night with a collasped left lung, filled with pneumonia, and in cardiac arrest at 15 days old. Who knows. I remember it vivdly, I had given up my car (no job, no way to make payments) so my step mother was driving me to the local hospital in NH because Allie was greyish....Main St was a mess and we couldn't get close to the hospital with all the traffic....I was scared. I jumped out of the car and ran down the street, carseat in hand, to the ER.
That was the night I woke up.
I remember standing outside the ER room where they were flying around trying to work on my 4lb something baby (she never gained weight). They called things like "respiratory stat" and"code blue". I heard doctors screaming at other doctors. I heard them talk about how the intubation equipment they had was too small and they would have to bag breathe her until transport arrived from Boston.
Then I was called into the room because they were getting ready to load Allie into an ambulance to go down to Boston. I remember walking over to the bedside and as I cme upon her, she was so tiny, and there was blood all over her. In the process of trying to intubate for hours they had scratched her throat so bad. There was a man standing next to Allie and his only job was to keep pumping this little bag....which went to a tube that then went down her throat inflating her lungs with air. I remember thinking that this man could be distracted at any time and forget to pump that bag. Nobody talk to this man! He has a job to do!
Boston Children's Cardiac Intensive Care Unit....in 1999 it was on the 6th floor of the Fegan building. There were so many bells and whistles. I felt like I couldn't touch Allie because sometimes when I did, alarms would go off and nurses would run around. She was propped up on her side with a breathing tube down her throat and a feeding tube down her nose. IV lines everywhere not to mention the monitor lines. It was chaos. She was asleep that first night. There was a little lobster stuffed animal that I had in her diaper bag so I took it out and placed it in her crib. The next morning the nurse had it under her ventilator, holding up her breathing tubes. Allie looked at me. I can't explain what that was like. She looked at me through all those tubes and wires. She didn't cry. She couldn't cry anyway because she had the tubes going everywhere.
The Surgeon came in...he was the cheif of cardiovascular surgery at Children's. He explained to me what was wrong and what was going wrong. Her heart was deteriorating fast, her left pulmonary artery was non-existant, and they couldn't wait for surgery....but they had to wait for the pneumonia to clear up a little. She ended up waiting a week on life support before they did her Tetralogy repair. Everything that happened during that week is kind of foggy. I remember sleeping in a chair. I remember not being able to hold her at all.
The day of her surgery....May 21 1999. She was the first case that morning for surgery. I kissed her tiny body and they wheeled her away and somone came to escort us down to the waiting room. Doris was the nurse liason (Doris is still there! Just saw her in March). She came regularly with updates on how things were going in the operating room. When she said "Allison is on heart lung bypass now" I nearly lost it. I mean, of course she would be.....thy have to work inside the heart. But just hearing the words...I remember feeling like I gave birth to a child whose heart doesn't work. And I remember feeling at that moment like it was all my fault. Maybe I missed a few days on those prenatal vitamins. Maybe I could have drank more orange juice.
It ws a long surgery and I had to wait even longer before I could go up to the CICU to see her. I was now in the waiting room of the CICU....waiting for them to tell me that I could go to her bedside. I could see doctors ripping in and out of that ward. I could hear things.
They finally called me to her bedside. I walked over to her. She was under a heater because in the OR they have to cool the body down so much and a blanket covered he chest so that only her head was sticking out. I came closer to her and bent over and whispered that I loved her. She was obviously asleep. But I knew that she could hear me. Maybe.
I wantedto see what was under that blanket. I wanted to see what was going on that I didn't know about. I mean I could see a million IV lines comig from under the blanket and I could see chest tubes coming from under the blanket and being drained into some bubbly machine on the floor. But I couldn't see her body.
Nobody prepared me for what I was about to see. What I saw, no parent should have to see. When the nurse pulled back the blanket, I stumbled, hitting my head against the heater. There were the chest tubes. not one but three. There was a catheter. There was a central line in her neck and regular IV lines in her arms. There was an external pace maker just laying there on the bed with the wires coming from out of her stomach. The incision for the open heart surgery was covered under a million layers of gauze thank goodness.
I just buckled.
How on Earth was I ever going to be able to take care of her?
The next morning was more of the same....except she was puffy from all the fluids.
I think by night 4 post surgery she was extubated and I was finally able to hold her late that night. I had wanted to hold her for so long....and this nurse came to my chair bed and said "It's time, you can hold her". It was the most incredible experience of my life.

They discharged Allie to go home 10 days after her 1st open heart. She had an appointment to go back to Boston a week later. We hired a new visiting nurse and got a new pediatrician. No one was EVER going to blow off my concerns again.

Fast forward one week. It's now June and we are back in Boston for an echocardiogram. She coded.
As they were administering the Chloral Hydrate she coded. I remember the nurse pushing the button on the wall...you know, the big red one that says EMERGENCY and makes alarms go off and people start running....yeah that's the one.
NOW WHAT????
The doctor performed an echo...and then I was able to hold her and feed her...seemingly as though nothing had happened. As though that whole "she coded" thing...never even happened...
As I'm feeding her...she goes black. The nurse grabs her out of my arms and runs wth her down the hall... and pushes the red button again.
They admit her to the CICU again......it would be a long time before Allie saw daylight again.
Several tests performed showed they couldn't figure out why Allie would be fine one minute and in respiratory failure the next. I had a few people tell me what their hunches were....but no one could say anything solid. She would have a few good days and then they would move her to the step down unit....only to be bumped back to the CICU a day later. One day she was in the step down unit and doing well....we were on a roll....people were talking about discharging her that week. I went downstairs to grab breakfast. Came back to her room 20 minutes later to find the crash cart outside her door and 10 doctors in her room. I was screaming and crying. I remember a doctor telling me "you are going to need to learn to roll with the punches a little better. She's not like other babies. She will never be able to be in daycare"....and I'm sure he filled his rant with other things....but that's all I rememeber.
July came and they decided that Allie had been intubated long enough. They needed to act. The surgeon came to me and said they were going to do a trach tube and with positve ventillation, she would be discharged. Hmmm.....
I called a meetig with the cardiologist and the cardiac surgeon. I begged and pleaded. "Just trust me....it's LOWER than that" I said. They must have believed me. They themselves went back to the drawing board. They scheduled the trach surgery but the night befoe the surgery was to take place, they came to my daughter's bedside and said "we found it.". They had gone back over the fleuroscopy, bronchoscopy, MRI, CAT scans...they found that her aorta was wrapped around her airway. Another defect. A major one.
"We've never seen anything like this before".
You never want to hear that. Not by them. Not at this hospital.
They couldn't "fix" the situation...but they could temporarily attach the aorta to the breast bone to get it off the trachea to give that a chance to harden. That was the slated goal anyway.
Back to the operating room.

Cont. later....I am starving and in desperate need of coffee!