Charlie's Story

Background:
Well, I am going to try to summarize Charles's story. (I refer to him as many different things. Bear with me.) Four weeks ago, Charlie began to show signs of a common cold - a cough, a runny nose, decreased appetite. (And boy, could he suck back a bottle!) After a week, I took him and his sister, who was just as germy, to their pediatrician, Dr. Dehner. Both children were examined, and although both had the same cold symptoms, Dr. Dehner seemed more concerned with Addison since she had a history of ear infections and of course ended up with double ear infections. He told me Charles sounded fine, just a little stuffy. He told me saline spray and a humidifier. A week later, (February 22), Charlie still sounded bad. As a matter of fact, he sounded worse than before. As his grandmother would explain it, "he sounded like an 80 year-old man who had been smoking for 90 years." I brought him to St. Luke's in New Bedford, and around 11pm that night, he was being admitted to the Lumbar unit. They began albuterol treatments every four hours. By morning, he was discharged and sent home with a nebulizer so I could continue the albuterol treatments for two more weeks.
Charles went to his two month check-up. Still, he sounded wheezy and asthmatic. Again, Dr. Dehner didn't seem concerned. He told me to continue the albuterol. A few days later, I brought Charles back to the pediatrician's office. Dr. Dehner was on vacation so Charlie saw Dr. Katherine Frias. After listening to his chest, monitoring his oxygen levels,  respiration rate, and heart rate, she decided to give him an albuterol treatment and see how he sounded afterwards. Still, he sounded crappy, for lack of a better word, so she decided to admit him overnight again in the Lumbar unit at St. Luke's. This time, he was constantly monitored, was under an oxygen tent, and was given albuterol every four hours and started on oral prednisone (another steroid). The next morning, he started to sound better. The oral pred had made his lungs sound a bit clearer and seemed to temporarily stop his symptoms. She prescribed a five day supply of oral pred for home to be taken along with the albuterol.
After the five days, Charles was brought back to see Dr. Frias. (While he was in the hospital the second time, I switched his pediatrician to Dr. Frias because I was so happy with how she handled things.) She decided to start him on Pulmicort, a preventative steroid, in addition to (of course) the damn albuterol. Charlie had been on the inhaled steroid cocktail for four days before he suddenly stopped eating.
The thing you have to understand about my peanut is that he is like his daddy. He likes to eat....a lot. :) He was on 6ozs every four hours before he got sick, and the doctors would actually complain that he was eating too much. (Little did they know he was also on cereal and jar food! I was going through a can of formula in two days. I had to stop breastfeeding because I couldn't produce enough milk to keep up with him, and he ended up eating more and more formula.) After about two weeks of being sick, he had gone from 6ozs to about 3-4 ozs every 3-4 hours. March 16, he began to eat about 1oz and turn away from the bottle. He would get fussy which was NOT normal for him.
Another thing you have to understand about Charlie - when he was born, Tim and I were sure we were being rewarded with an amazingly quiet, good baby because Addison had been SUCH a handful with her colic, severe acid reflux, chronic ear infections requiring tubes in her ears. Charles was NOT fussy so when he became inconsolable, it was highly unusual.
That night, Charlie had more coughing fits than normal, and they sounded worse than ever. That morning, I gave him his nebulizer treatment, attempted to feed him, and when he refused, called the on-call pedi. They told me to go straight to the hospital. At 7:30am, Charlie, his grandmother, and I arrived at St. Luke's and seen promptly. They gave him a dose of oral pred and the ^#*!ing albuterol. The on-call pediatrician suggested he be admitted a third time to the Lumbar unit, but they called Dr. Frias who requested he be sent to Children's Hospital in Boston.

Diagnosis:
Around 10:30, Charlie and I loaded up and were transported to CHB via ambulance. We arrived in the emergency room, and I was amazed at how fast we were seen. Within 30 minutes, a doctor came to talk to us, and we were sent for a chest x-ray. A while after that, they came in our room to perform an EKG. A bit after that, we net with a cardiologist named Christina Ronai who performed a second EKG, She spoke briefly about the possibility of a valve defect but blew it off because of its rarity. After the second EKG, Dr. Ronai requested an echocardiogram. About halfway through, Dr. Ronai asked where Tim was. (He had arrived after the first EKG. At that point, he was moving the car from one garage to the hospital's garage.) When he came upstairs she took us to a private room where she gave us the news about their discovery. The chest x-ray showed an enlarged heart. That lead them to perform the first EKG where they found some abnormalities. To be certain, they performed it again to see if they got the same abnormalities - and they did. The results of those tests made her believe it could possibly be ALCAPA so she requested the ECG, and in the first ten minutes of the ECG, they diagnosed it. She explained to us what exactly it is and what would need to be done.
ALCAPA, or anomalous left coronary artery from the pulmonary artery, is a very rare heart defect affecting 1 in every 300,000. It occurs when the left coronary artery is attached to the pulmonary artery (the artery that brings blood to the lungs) instead of the aorta (the valve that brings blood to the heart). The only way to treat ALCAPA is open heart surgery to take the coronary artery and attach it to the aorta and repair the pulmonary artery. The survival rate, if untreated, is less than 10%. The surgery usually corrects ALCAPA, but many months of treatment with various medications are still necessary. Eventually, children who were once afflicted with ALCAPA go on to lead normal lives.
Immediately, I called my dad and broke down to him. In a matter of a day, I went from thinking my two month old had whooping cough or asthma to finding out he has this incredibly rare heart defect and would require open heart surgery, a month or so of hospitalization, and more months of medical treatment and follow-ups with cardiologists. I called our immediate family and returned to the room where Charlie was laying on the stretcher quietly. I  cannot explain it, but I just held him in my arms and looked into his eyes, tears pouring out, and there he was - just staring lovingly at me with those gorgeous blue eyes, and all I could do was feel sorry that he had to go through this, feel angry that it was happening to him, feel so overwhelmed. They moved us to the CICU (cardiac intensive care unit) where right off the bat, a team of cardiologists and nurses stood in our room all spitting out information and asking questions, and there stood Tim and I, still in complete shock, staring at our baby boy.
I don't want to say that you look at him differently after this, but believe me - you do.
That night, I slept in Charles's room while Timithy slept at his father's house. Charlie was started on lasiks (diuretics used in for heart patients) and a dietary restriction of 2ozs every 2-3 hours because he was fed about 3 & 1/2 ozs and vomitted it all over myself, his blanket, and the floor. It was really hard to sleep that night, but I managed to get some sleep.
The next day was Sunday, March 18. It was to be a day of rest since he had been scheduled for open heart surgery the next day. My dad and sister, Brandy, came to visit as well as Tim's dad. Tim and I met with the anesthesiologist and signed consent forms. I briefly met with his surgeon, Dr. Chris Baird, who had explained that while looking through the ECG images the ER took, he found a hole in Charles's heart in addition to the ALCAPA. This poor child couldn't fucking win. That night, Tim and I shared a twin sized mattress in one of the rooms in the parent sleep quarters. It was the first time in years we slept without waking up with at least one of the kids, and it was a restless night, not only because we are two big people attempting to sleep on a twin sized mattress or that it was FREEZING in the room; it was the fact we knew in the morning our infant son would be cut open and have a surgeon cutting pieces of his heart! You can say it as many times as you would like - I know CHB is the best place in the world to be for things like this, but it is still an imcomprehensible concept. It just makes you feel completely powerless to know that the thing that could save his life can possibly kill him, but it is what NEEDS to be done, and that is an awful feeling.

Surgery:
We woke up about 5AM that morning, cleaned up our things, and headed up to the CICU. The nurse told us "Grampa" was there in the waiting room. Since my dad had said the day before he had to work, we assumed it was Tim's dad, but it wasn't. My father explained he couldn't sleep and just could not go to work. He had to be there for Charlie, and Tim and me, and I was relieved and comforted knowing he was. A research nurse approached us and informed us of an ongoing study that was trying to see the benefits of insulin on children who are healing from cardiac surgery. He explained that after such surgery, blood sugar often goes up so treating it with insulin in adults has shown a lower risk of infection and a decrease in hospital stay time. The study had been going on for 3 and 1/2 years and was wrapping up in May of this year. They were forty patients short of the total needed. We agreed to include Charlie and signed consent forms. As the morning went on, we would briefly pop in and out of Charlie's room. Although I wanted to spend every second by his bedside, his heartrate had climbed quite a bit since being admitted. A normal heart rate for infants 0-3 months is anywhere from 100 BPM - 150 BPM. Charles's was in the 180s to 220s. He was in heart failure so we let him rest as much as we could.

Charlie watching Sesame Street before surge

 I was trying to get everything I needed to get done, done this way after his surgery, I could focus on Charles and his healing process so I called Salter School to let them know I couldn't attend the medical assistant program I had started the week earlier. I called PACE to let them know I would not be attending school anymore. I called daycare to let them know that Charlie would not be in daycare anymore, but Addison would be there until April 2nd. I called my DTA worker to see if it was possible for me to get a referral for daycare to keep Addison there while I care for Charlie and Tim works. (Needless to say, I had to leave a message since DTA NEVER picks up. -____-) Meanwhile, our families were showing up to support us. My mother and her husband arrived. My other sister, Teshia, showed up at the same time as Tim's mother and grandmother. Since we were unsure if we'd need someone to get Addison from daycare back in New Bedford, Trace (Tim's mother's girlfriend) stayed home in case. We all took turns spending a little time with him. (Teshia got to hold him since it was her birthday and about the third time she has seen him in his life, but we asked that no one else hold him since we really wanted to keep him heart rate down.) Our nurse, Karen, took me to see a post-op baby so I wouldn't feel too overwhelmed the first time I saw Charlie. I'll tell you, despite the fact this was not my child, it was still hard seeing this little girl hooked to tubes - and she wasn't even hooked to as many machines as they anticipated Charlie would be! I returned to the family waiting room where everyone was sitting. Around 1pm, they called Tim and I to walk with Charlie and the surgical team to the operating room. We walked to the hallway of the surgery floor and were told to give kisses to him since he'd be going to the OR while we met with the nurse liason. It was so incredibly difficult, but I leaned over and kissed him. Since my little fat boy was so hungry, (he hadn't eaten since 2am that morning), he tried to eat my face and licked me. It made me laugh, and he smiled. As they wheeled him off, Tim grabbed my hand, and we walked in the opposite direction. We met the nurse liason who took my cell phone number and explained she'd be calling every 90 minutes with an update for me. We went back to our family waiting room.
While waiting for news, there isn't much to do to keep your mind off of what is going on. We ate, went for walks, sat on the computer, talked, watched TV, but we watched the clock likes hawks, waiting for the next update.  At 2:30, the surgery began. (It took an hour and a half to prep him.) At 3:10, Charlie was put on bypass, and the valve repairs began. 4:45, they called to let us know his valves we repaired. An ECG was being performed, and then they would close him up. At 5:30, we were called and told he was off bypass and that we should come to the surgery waiting room five floors down because the surgeon would be out in 20 minutes to talk to us. We sat in that room for an hour and a half with no news before they told us to return to our family waiting room where the surgeon would meet us. At 8pm, the surgeon finally came to speak to Tim and I in the consult room.

Prognosis:
"Your baby is okay." was the first thing he said - the best words to hear as we stepped into the room to sit. He explained they moved the coronary artery to the aorta and repaired the pulmonary and sewed the hole in his heart. He also said Charles's heart function was already improving, something we thought would take weeks to start, that he was NOT on ECMO (a machine that functions as the patient's heart) which is something that we thought was most likely going to happen. His chest was CLOSED, also another feat since we assumed it'd need to stay open. He was very confident that Charlie would be doing well since his surgery was such a success. Tim and I were so overjoyed hearing this news. Instantly, tears were streaming down my face. I was smiling so big. We shook hands with the surgeon, and I thanked him repeatedly. We ran into the family room and shared the amazing news. Everyone began hugging and crying. It was THE happiest moment in my life. My son was given a second chance at life. He was fighting his hardest and kicking major ass. We were told it'd be a little before we could see him so we all went to grab something to eat. (My mother and her husband had left so it was Tim, his mother, his mother's girlfriend, his grandmother, my father, and I.) We went to the food court a block away, and although I was so hungry, I couldn't bring myself to eat. I was on a high. I was so happy to know what was going on, to know the hardest part of it was over. He was doing well considering what he had just gone through. We all came back to the CICU, and Tim and I were obviously the first to go back and see him. For the first time during this whole experience, Tim broke down. Charlie had an IV in his head, a tube in his nose to suction his stomach contents, a breathing tube in his mouth and down his throat connected to a ventilator,  a catheter in his jugular, two chest tubes (one in the peritoneum and on in the mediatinum) both tubes relieving the cavities of fluid, two lines connected to his heart, an "A" line in his wrist, a line in his femoral artery, an IV in his foot, a catheter in his penis, and a probe in his bum. He was on a paralytic, morphine, dopamine, epinephrine, heparin, insulin, nitroglycerin. It's scary to see any adult like that, scarier to see a child or infant like that, but when it's your own child, it's downright frightening. I couldn't even cry. I was still elated from knowing how well his surgery went.

Right after surgery

Tim quickly returned to the waiting room to let someone else go back and see him. Everyone quickly peeked in on him, and we all returned to the family room. Tim, who previously stated he wanted to go back to work the day after Charlie's surgery, quickly decided he wanted to take a week or so off. (It hit him hard to see the baby the way he looked.) We all chatted and decided it was late. My dad left. The rest of us grabbed my things and walked to the parent sleep quarters. They helped me get settled and then left for the night. I went on Facebook and updated everyone as I had been doing the whole day, but I quickly got exhausted and laid down. My mother and I spoke on the phone for a little, and after she and I hung up, my father and I spoke for a little. Around 11pm, I was asleep.

Day One Post Op:

At 12am, my phone went off. It was Charlie's nurses. Apparently while emptying one of the balloons attached to his chest tubes, the nurse was sprayed in the face with the bloody fluid. They needed my permission to test Charles for transmittable diseases since he acquired a blood transfusion during surgery, and it was standard protocol. Obviously, I had no objections and attempted to fall back asleep. 

I woke up again around 5am, and I began to get ready for the day. At about 8am, they stopped Charlie's paralytic and discussed the possibility of removing his breathing tube the following day. I was so happy. He was making so much progress so quickly. They also took him off of the nitroglycerin and were removing one of the heart lines and a chest tube. Patiently I sat, updating family, getting school loans figured out, leaving a message with Charles's pediatrician to call me. The nurse mentioned Charlie had started moving slightly so I jumped up and ran to his bedside, and I caught a glimpse of his eyes. I was so happy! He closed them and fell back asleep, sporadically kicking his feet and flailing his arms. The ventilator showed that Charlie was breathing on his own with a little help from the machine. They seemed really confident in his progress so far so when his heart rate started climbing as well as his temperature, and his blood pressure began dropping, they decided to play it safe and put him back on the paralytic until the next morning if he was doing okay. At first, i was upset because he seemed to be making so much progress so fast that it was keeping me very hopeful, and suddenly it seemed that hope was gone. I could hear the baby next door crying, and it pained me to know that I wouldn't be hearing him cry soon. I spoke with the nurses though and realized it was okay. He had undergone major heart surgery the day before, and he was entitled to be tired from a few hours of breathing on his own. He was entitled to a good rest. I would have to learn to be patient.

Charlie the day after surgery with his gown (that I plan on stealing

There was not much excitement throughout the rest of the night. He was taken off the insulin since his "A" line was starting to become unstable from all the blood sugar testing. He was pulled from the study. The IV from his head was removed since it no longer worked. He was put back on the cooling blanket to maintain his body temp. (He was taken off it when they removed his paralytic that morning.) It was, again, time to rest until the next day. I showered and fell asleep around 11pm, looking forward to tomorrow.