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Zachary Aaron |
I had been experiencing chest pains so I had an EKG and then an echocardiogram, and then wore a Holter monitor for 24 hours. The cardiologist's report said I had an extra piece of tissue on one of my valves that was causing the fluttering and shortness of breath. It "acted up" when I was tired or stressed. I was working full-time for an optometrist and it had gotten very stressful. I knew that it wouldn't pay to work and pay for daycare once the baby was born, so I gave notice...well, I almost lost the baby in April, so that was the end of working for me. What GOD had planned for me was pretty clear...stay home with my children!
A beautiful little boy was born on September 14, 2000. Zachary Aaron weighed 7 lbs 13 oz. It was a short labor and delivery, I went from 2cm to 10cm in 45 minutes. Zachary was "bluish" when born so they had to keep him under the warmer to "pink" him up... and that seemed to do the trick. (warning sign #1) After a couple of hours, he was able to stay in my room with me. We were trying very hard to breast feed, but he just kept falling asleep (#2). The lactation specialist kept telling me to undress him, tickle him, etc. to keep him awake so that he would feed. Later, when the Doctor came to examine us, he told me that he had detected a heart murmur with Zach, but said it was probably nothing (#3). We went home a couple of days later.
We went back for jaundice tests three more times over the next week. Went to all our checkups like normal. We went to WIC clinic every month, had home visits by nurses to help with the breastfeeding issue. After a frustrating two weeks, I decided just to bottle feed him. The most we could get him to eat was 2 ounces before he would fall asleep. So he was eating every two hours, 24/7. I had noticed that he wouldn't sleep very long laying flat (#4)...so he slept in the crook of my arm. Sometimes he would wake up and his back would be sweaty (#5). I noticed that his feet would take on a bluish tint (#6)...I was told that I was holding him wrong and he just wasn't getting enough circulation. All of these things were mentioned to a doctor or nurse at some point during his first 5 months of life...but nobody actually figured it out!! At Zach's two month checkup, I asked about the murmur and the doctor said she couldn't detect it anymore.
In January of 2001, my husband took Zach and I into the clinic because we were both sick. Zach's breathing was heavy and his chest sounded extremely junky. We were scheduled to see a PA. She listened to Zach's chest, looked in his ears and down his throat...announced that he had a cold and gave him an Rx for Zithromax. She did the same to me and gave me an Rx for Tamaflu. After two days, I felt better... but Zach wasn't getting any better so I called the clinic. They told me that Zithromax takes a few days to kick in and to wait over the weekend. He seemed to be a lot better the next week, but still had the junky sound in his chest. I let it go a couple of more days, then decided he truly wasn't better, so I took him back to see the PA on February 13th.
This time when she listened to his chest, she decided to get a chest x-ray and also an RSV test...then we were sent up to respiratory therapy to get a pulse oximeter reading (sats). They didn't have anything for an infant there and were just using a portable unit. She kept questioning whether it was working correctly as the most she could get anywhere was 55. Meanwhile, Zach is tired and hungry, grumpy and irritable. When we were finished, we waited back in the exam room. The PA came back in and said I would probably have to take him to Dubuque Mercy Hospital because they were better equipped to handle infants, she said she was waiting for them to call her back. I am not sure what went on in the next 15 minutes, but pretty soon she came back and said that we needed to go over to the Emergency room to see the doctor on call. My belief is she finally conferred with a doctor and was told that this could be serious. There was a lot of activity as they were trying to give Zach oxygen and albuterol, trying to find a place to put in an IV. The doctor was absolutely taking over control and the PA was apologizing "discreetly" to the doctor. You could have cut through the tension! The PA told the doctor she was waiting for a referral to go to Dubuque Mercy Hospital. The doctor said to book Lifeline Helicopter to go directly to Iowa City Children's Hospital. Well, pretty soon the PA vanished and the doctor took over. It was too foggy for Lifeline, so we took an ambulance to Mercy in Dubuque where the closest pediatric cardiologist was. I rode along in the ambulance while my husband following in our Jeep. The doctor had already arranged for a transfer team from Iowa City to meet us there. The doctor on call rode in the ambulance with Zach, which I have since found out it is highly unusual (hhmmm?).
At Mercy in Dubuque, Zach was diagnosed with single ventricle (univentricle) and transposition of the great arteries (TGA). He was in congestive heart failure, and that was the junky sound in his chest. The doctors and nurses let the transfer team from Iowa City get Zach stabilized enough to travel and intubated him. After an hour or so, they were ready to leave. I wasn't allowed to ride along this time, so rode with Aaron in our Jeep. The next week is pretty blurred with tests, having a cath done to see exactly what was wrong, ups and downs. Zach also had pneumonia and the H flu, so they decided to extubate him to get well enough for his surgery. By that time, he was addicted to narcotics and had to go on methadone. For two days straight he did nothing but watch cartoons and blow raspberries with his tongue (the nurses just loved it!)
Finally he was well enough for the surgery, which was to be the
bi-directional Glenn. The surgeon, Dr. Calderone and his assistant spent
a lot of time with us explaining the procedure. The surgery took place
on February 27th. Zach did very well afterwards, but the day after was
very, very difficult. We had a WONDERFUL nurse care for him that day and
she was kept running...Jenn! He was kept pretty sedated and paralyzed
most of the time because he was extremely agitated. The next day the PCs
weren't really happy with how he was doing, so they decided to do
another cath. That went well and they said everything looked good...
maybe it would just take Zach a little longer than normal to bounce back
because he was such a "brute". Actually everyone referred to him as a
"brute" because he was not typical of your normal heart baby as he had
plenty of meat on him! He did have some "weeping" in the sac surrounding
his heart, which they did a procedure in which they removed the fluid by
putting a needle through the pericardium to draw it out (I think it is
called a pericardiocentesis). They got out the majority, but there was
still a little left that they decided was harmless because of where it
was sitting. They also decided that there was some damage to his
lymphatic system, so put him on a special formula called Portagen.
Later, Dr. Calderone stopped by to see how Zach was doing. I told him that I just thought he would do SO much better if they would extubate him and let him come around on his own. I just had this feeling that if he was able to get off the vent, he would be better. It took a while to wean him off the vent, I believe he had a collapsed lung issue and was receiving treatments for that (jackhammer-like device on the chest). He also was on some nitric oxide (?). Zach was being taken off his paralytic drugs, and was aware more of what was happening. If they didn't extubate him soon, he was going to do it himself!
After Zach was extubated, taken off his narcotics, and put on methadone, he started getting better very fast! Dr. Calderone stopped by and told me that mother's usually know what is best for their children and that I was definitely right! He is a wonderful surgeon, held in awe and in very high regards by the staff. We were so lucky to have a great children's hospital within reach. Zach was moved to the children's ward on a Monday and was released to go home on the Friday after that. In all we spent 32 days in the hospital, I say WE because I could not bear to leave him. I did go to lunch a few times away from the hospital and shopping to get some stuff I needed for my stay, but couldn't make the trip home (3 hours) without him, so I stayed. We had a brief 3 day stay two weeks later with a bout with RSV, but it wasn't near as bad. We had a feeding issue because of chylo, so he was put on a very expensive formula called Portagen until he was 13 months old, now he takes Acidophilus milk just fine.
Currently, Zach is almost 16 months old...almost one year
post-surgery. He had been going back every month, then every two months
and now every six months. He is due for his checkup on February 12th. We
are hoping to put off the need for his Fontan until he is 3 or 4...we
will see. He is a very active little guy, walking at 15 months old,
climbing up onto whatever he can get onto. It is hard to believe
sometimes that he has CHD. He weighs in at over 25 pounds now. I have
been doing a lot of research into CHD and working on CHD Awareness. We
will be going to the Iowa State Capital to witness the signing of the
CHD Awareness Proclamation...which we get to keep the original this
year! Thank you for taking the time to read Zach's story. Blessings!!
Update February 27, 2003
I can't
believe it has been over a year since I last wrote the above story. AND
almost two years since Zachary was first diagnosed. Let's pick up where
we left off...
Zachary had another bout with RSV in February of 2002 which required another ambulance ride from our local hospital to Iowa City. He was admitted, then released the next afternoon. Each PC visit we had over the next few months I almost dreaded, I knew he was slowing down, getting tired more easily and taking more naps. Those were signs that he was growing out of his first procedure. Finally in October, the PC said we should do a catheterization to determine what the function of his heart was, to get the exact anatomy in preparation of his Fontan completion. They also decided to do an electrophysiological study to prove/disprove that there was or wasn't a problem with his heart's electrical system.
Zach had his cath done in early November which took about 3 to 4 hours. It was proven that there was no problem with his electrical system. It also showed a difference from his initial diagnosis and a couple of other problems that needed to be addressed during his upcoming surgery as well. He had subaortic stenosis, which is a narrowing of his aorta (the artery coming out of his ventricle) that caused a difference in the pressure of the blood flowing thru it. It would need to be surgically widened or the extra muscle removed (not sure exactly). They would also need to do an atrial septectomy, which is to put a hole or passageway between the left and right atrium. That would basically make his 3 chambered heart into a 2 chambered heart, with one ventricle and connected atrium. According to his cath results, his diagnosis is now Double Inlet/Outlet Right Ventricle (Single Ventricle with Right Ventricular Morphology), D-Malposition of the Great Arteries, and Subaortic Stenosis.
Zach was scheduled for surgery in November, but got sick, so we had to reschedule it for December 13th (a Friday). We drove the 3 hours to Iowa City and checked into the motel only to find out that we needed to reschedule again.
Zachary went into surgery on December 16th about 8:00 a.m., it lasted until almost 2:30 p.m. He had the external conduit Fontan w/ fenestration, an atrial septectomy and subaortic dissection. He was on by-pass for about an hour. Dr. Calderone came out and said everything went well and we could see him in soon. Although we knew what to expect this time, it was still hard to see him again with all the tubes, IVs and wires. He had a pretty good night, was extubated the next day and just needed blow-by oxygen. There were some issues with fluid around the heart (fixed with Lasix) and his heart rhythm was conjunctional (his atria and ventricle were pumping at the same time instead of separate) He had pacer wires in place, but only ventricular ones, but they used those along with a medicine to get his heart to beat properly. Basically, they tweaked, tested and made his heart go back to a better sinus rhythm. They had thought they might have to put in a pacemaker, but that was not needed after all.
After one week in the PICU, Zach was moved down to intermediate care where he was able to go for rides in a wagon, go to the play room and go for short walks. The first time he tried to walk, it was like he had jello legs. We celebrated Christmas as a family together (the 5 of us crammed into what I was informed as "the smallest room on the floor"); Grandma and Great Aunt Julie drove down to see us that day. Grandma and Grandpa had come down a couple of times before that. I was glad for the company and the distraction for Zach, as he was becoming mighty bored. I knew he was getting better when he started giving his oxygen mask to his new stuffed animals. He spent one week on the intermediate floor and was released on December 29th with his chest tubes still in. We went back on January 1st to have them removed. Zach had his 6 week post-op visit on January 21st...he doesn't have to go back for SIX Months!!
Zachary is again receiving the Proclamation from Governor Vilsack of Iowa for February 14th CHD Awareness Day. As a family, we made gifts called "Gifts from a Broken Heart" to give to new Mothers delivering at our local hospital during February. We also made up stuffed heart shaped lapel pins to raise money for our support group in Iowa City.
