At about 5 weeks old, I started noticing that Jeremy was sleeping a lot. It would have caused me concern except I was just so grateful to be catching up on my rest. One Friday night he slept from 5 PM until the following morning, without getting up to nurse. I did call my pediatrician that next morning and express concern. He told me that sometimes newborns sleep a lot. We also started noticing that Jeremy would fuss when we picked him up rather than when we put him down. He started looking pale but mainly, he was sleeping a lot.
Wednesday morning, October 10th, I woke up with Brian. I hadn't heard Jeremy wake up in the middle of the night and figured I would get up to check on him. He was not interested in nursing and again, was very pale. I was sitting on my loveseat and I caught a glimpse of him as Brian walked back to take a shower. I asked Brian to turn on the light and I looked at my son. He didn't look right. He felt cold and was lethargic. We did what we thought we should; we called the pediatrician's office to have him paged and took Jeremy's temperature. It was 93. I figured it had to be a malfunction with the thermometer, so I tried again. Nope, 93. At that moment, I called 911.
I wish I could say the rest of the morning was a blur, but it's still clear as day. By God's grace we literally lived around the corner from the fire station. They were at our condo in minutes. They transported Jeremy to Northwest Community Hospital. When they got him to the hospital, it was a frenzy of activity. I still remember him lying on an adult-sized bed in the ER. He was under a warming lamp. He had little gauze pads with little bits of blood on them laying all around him. He had monitors on his chest and they eventually intubated him. I learned later from my uncle (who is a doctor) that intubating a child of that age is a very grave thing. The chaplain came to talk to us and offer words of comfort. My parents got to the hospital, but I was the only one who could manage to stand next to the hospital bed. I kept telling Jeremy I loved him, that everything was going to be okay. It was surreal, but at the same time I was very present for all of the bustle that was going on around him.
To put things in perspective, I will share some of his stats from that day. His heart rate was over 290 beats per minute. Normal heart rate for an infant of his age was 130-140. An adult human's blood pH is 7.4. When it reaches 7.1, that person is typically in a coma. Jeremy's was 6.8. When we later met his cardiologist, he said that if I had not called 911 when I did, Jeremy would have been dead within 2 hours. Sitting here at the computer, I am very aware that 2 hours is nothing. My son was 2 hours away from death. I had just welcomed him into the world and was 120 minutes away from having to say goodbye to him.
Jeremy's heart has two problems. There is structural damage; the left tricuspid valve is leaky. That condition is called Ebstein's Anomaly. He has a very mild case of that. There is also faulty circuitry in his heart. That condition is called Wolff-Parkinson White. Think of a house with all the electrical wiring in it. Everything seems fine, but there's one outlet that shorts every time you plug something into it. Basically, this circuitry caused Jeremy's heart to start beating extra fast. His body was working hard to counteract this effect and that's why he was so tired (and also why he fussed when being picked up-his chest hurt because his heart was going like a machine gun). Because of his poor condition, they estimate that his heart had been beating fast for several days. I had the opportunity to listen to his heart (later) when he was in SVT (supraventricular tachycardia). There is no way to discern individual heartbeats--it really does sound like machine gun fire or perhaps a drumroll. It's very hard to describe, but I can assure you that I love nothing better now than to feel the slow, steady beat of Jeremy's heart when he's cuddling with me.
The resolution to these two conditions varies depending on the severity of the symptoms. The Ebstein's Anomaly was so minor that they didn't feel like he needed surgical intervention. The WPW was a bit more severe; we were initially given a prescription and sent home. Less than a week later, we were treated to another ER visit and a week-long hospital stay. Our electrophysiologist, a lovely man who wears his lab coat like a cape, told us he didn't want to do an RFA (radiofrequency ablation) on someone so tiny if it could be avoided. From that discharge on and for the next year, we gave Jeremy two different medicines three times a day (we had to sneak into his room at night to give him a dose--luckily, Brian was a ninja in a former life).
Through all of this, Jeremy was absolutely a champ. He charmed all the nurses, smiled at everyone who came into his room and generally was just his cute self. My favorite granddad/grandson moment happened during this period also. During the first hospitalization, they didn't allow him to eat for 2 days. For a breastfeeding mother, this might as well have been 2 years. I was beside myself and didn't feel like I could comfort him well because I knew he'd want to nurse. My dad took time off of work and spent the entire day standing with Jeremy next to his bed, singing "Jesus Loves Me." I'm not exaggerating. The entire day. It was an amazing sight.
A year later, I was set to go on vacation with my parents to Pennsylvania. My dad, who is always antsy to get on the road, came over the morning we were supposed to leave. I told him that Jeremy was still sleeping. He went in to check on him and immediately, we knew something was wrong. Jeremy was just lying in his crib, looking up at us with those beautiful brown eyes of his, sucking his thumb. He was cold and clammy. We called 911, he got treated to another ambulance ride and another ER. This time though, for a special treat, he was sent on a Flight for Life helicopter from NIMC in McHenry to Lutheran General in Park Ridge.
It turned out that one of the side effects of his medications was an occasional dangerous drop in blood sugar. We were hoping he wouldn't have to have the RFA until just before his third birthday, but this sped up our timetable. At 13 months old, we drove him early one morning down to Lutheran General. He hadn't eaten, but was mostly peaceful for the ride. When we got to the hospital, he was put into a hospital gown, an IV was started and we all loved on him. Dr. Ovadia (his cape-wearing electrophysiologist) came to tell us that the anesthesiologist was going to give Jeremy a mild sedative before they took him away. This would cause him to go to sleep so that he wouldn't be crying as they led him away.
As an aside, I have seen them administer this particular drug to both my husband and my mother. In both instances, it rendered them unconscious almost immediately. Jeremy, on the other hand, was given a second dose. The anesthesiologist then told us he just had the normal dose for an adult. His head lolled, but he fought through it. They carried him away and he was crying. It was heartbreaking. It was not the first time I realized my son was really a lion in a boy's body.
Today was the second time. Last week, he was at his tumbling class (for toddlers, nothing like Olympic-preparedness training). Like a good 3 1/2-year-old, he was upset about some perceived injustice and decided he didn't want to listen to his instructors. I didn't realize because Brian hadn't mentioned it, but at some point he hit his head on the parallel bars. He cried, but Brian saw nothing that would point to a serious head injury. Please understand, Jeremy spends a lot of time on the ground. We lovingly call him the "absent-minded professor" because he gets so involved in what he's doing that he doesn't pay attention to his surroundings. Hitting his head on the parallel bars was not something unusual, so Brian didn't get too alarmed.
This past Wednesday, Jeremy was sitting on my lap and I realized there was a hug bump on his head. What's more, it was a scabbed-over bump. I was horrified and immediately called Brian, who then relayed the parallel bars incident. I typically know what to do in these situations but when I am pregnant, my radar gets jammed. I talked it over with Brian and we decided that we would just watch and see. Over the next few days, it didn't improve but it didn't get worse either. Today, we decided we would take him in to immediate care just to have it evaluated. First, they determined that he has a double ear infection. Second, they had to wash off the wound. They initially just used saline, but then switched to hydrogen peroxide. My dad held him to his chest and I had to stand behind my dad and hold each of Jeremy's arms and pull so that he wouldn't interfere with the nurse or the doctor. It was excruciating to watch his little face as they cleaned him off and to participate. I felt like the worst mom ever.
A couple of hours later, though, and you would have never known it had happened. My little lion man was joking with his sister and acting like nothing had happened. Unfortunately, I had to give him a special bath with more peroxide tonight. Hated every minute of it. He wasn't fond of it, but afterwards, during the real bath, he pleaded with Bekah to stay in the tub with him just a bit longer. He let us know how he thought the rest of the evening should go, then got out and ran around naked with his sister.
There is nothing worse than having to see your child in pain except for having to inflict pain to hasten healing. I have been in the position to do both. I didn't like either. Through all of this Jeremy has proven to me that it's not the size of the man that determines bravery; it's the size of the heart in the man. Luckily, God saw fit to give him a lion-sized heart.
I wonder what I'll write about next....
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