Tuesday, July 23, 2013

Eleven Years Ago Today: Then and Now

On July 22, 2013, much of the world seemed to celebrate the birth of the new prince in Great Britain. Hooray for the Duke and Duchess of Cambridge! I mean that, even though I'm American and don't quite grasp the concept of a royal family. Congratulations are in order, nonetheless.

Yesterday, I was remembering eleven years prior - July 22, 2002 - when I went for a routine doctor appointment while pregnant with my second child. There were no rose-colored lenses while walking down Memory Lane this day.

He wasn't due until August 1st, but I was tired. I wanted him to be born yesterday, if you know what I mean. The doctor said, "The baby isn't doing well and neither are you. I need to induce you today." That jolted me out of my lethargy. I started making excuses like, "I need to go home and get my husband. I need to arrange child-care for my oldest son. I don't have any extra clothes." The doctor was kind but firm, "I'm sorry, but I can't in good conscience let you go. It's time to go to the hospital." We only had one car at the time, so my husband had to make arrangements with my sister to come babysit and with a neighbor to bring him to the hospital.

I went to the hospital shortly after 1:30pm. Since my first pregnancy had been induced I already knew what to expect. Despite this experience, I was in for a rough night ahead. My blood pressure spiked dangerously high and I was given some medication to bring it down. About 6:00am the following morning I was given an epidural. Finally, I could get some rest. Or not. By 6:25am he was ready, except that because of the epidural, I was not. Because of this the doctor had to initiate a vacuum-assisted delivery. If I had only known.

The first thing I noticed after he was born was that he didn't cry. I don't even remember if I got to hold him because I passed out. When I came to about 11:30am, I went upstairs to the ICU to visit him. I wanted to hold him or at least stroke his arms and face. At this point, I thought it was just a precaution that he was in the ICU. Before I realized what was happening, the seizures started. My baby was enduring seizures and all I could do was watch. He was having trouble breathing and there was nothing I could do. Little did I know he was experiencing a brain hemorrhage.

That evening, he was transferred to Seattle Children's Hospital where he stayed for nearly two weeks in the NICU. At the end of his stay, we were told that there was nothing more that could be done for him and that we should take him home to enjoy what time was left. In all likelihood, he would soon die. By the grace of God, that did not come to pass as we are celebrating his 11th birthday today!

My heart was happy and subsequently broken on July 23, 2002. Words like "Grade IV intraventricular hemorrhage", "seizures", "cerebral palsy", "developmental delay" and "cortical visual impairment" were not yet part of my everyday vocabulary, but they soon would be. Every year I remember this and thankfully the grief becomes less and less as I see the progress that he makes. But I digress. His party is this weekend, but we're still going to celebrate today. We're going swimming after lunch. We sit in the shallow end of the pool while he splashes. We're going to McDonald's for dinner because that's his favorite. After dinner, we're going to Whole Foods for dessert because they have the bomb brownies that he loves. Later this week I have cupcakes to make, more presents to buy, and a party to plan for this weekend to celebrate the birth of my little prince who has come a long, long way.

Happy birthday to my sweet little prince!


The Lord is close to the brokenhearted and saves those who are crushed in spirit. Psalm 34:18

Monday, July 8, 2013

Medication Merry-Go-Round

Back in May I was lamenting the no-win situation of trying medication for my youngest son's seizures. At that time, we were starting the second medication (Trileptal) because the first (Keppra) had undesirable side-effects, a.k.a. "kepprage". With the Trileptal, there did not seem to be any side-effects and my son seemed to do well on it. Until the last week of May.

Shortly after Memorial Day, my son developed a dry cough. I dismissed it as being a symptom of allergies, or possibly an on-coming cold. However, as the days turned into weeks I realized that it wasn't allergies or a cold. For one thing, there wasn't the usual accompanying runny nose and watery eyes. And when he coughed, he wasn't spitting up mucus. It was just a persistent dry cough.

I began to suspect that it was a side-effect of the medication, so I did a little reading. Sure enough,  a dry cough can be a side-effect of Trileptal. Before calling the neurologist, I made an appointment with the pediatrician just to be sure it wasn't bronchitis or pneumonia. I didn't want the neurologist to think that I was a paranoid mom, so I took my son to the pediatrician first. The result? A clean bill of health. No bronchitis, no pneumonia, no nothing.

When we got home I called the neurologist. As luck would have it he was out of the office for that week. The nurse practitioner spoke with another neurologist in the office who recommended decreasing the dosage by half to see if it made any difference. It did make a difference in that it reduced but did not eliminate the coughing. Mmmhmm. The following Monday, July 1, I received a call from the neurologist's office and his regular doctor was back in the office. He wanted to wean my son off of Trileptal and start him on Topamax. I hesitated. My son had been on Topamax as a baby and he was a zombie. I said, "You know, we're scheduled to see you on Monday the 8th. Let's wait and talk about it then." In the meantime I weaned my son off of Trileptal per the doctor's instructions. Saturday was his last dose and what do you know? His coughing all but disappeared.

At the appointment, we talked about alternatives to Trileptal. Tiagabine (I think) came up as did Topamax. The doctor also mentioned Depakote, but said he preferred not to start my son on that just yet as it requires alot of blood work. I tentatively agreed to try Topamax again. We talked about possible side-effects: tingling in the hands, confusion, weight loss. Sigh.

Today, we're starting antiepileptic drug #3.

I want off this merry-go-round. I'm sure my son does, too.


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