Monday, October 18, 2010


At Jacob's 6-month well baby visit, I mentioned to his pediatrician as an afterthought that he didn't seem to be using his right hand. I thought that maybe it was because of how I placed the hanging toys in his activity gym. When she dangled her stethoscope over his right side, he made a weak attempt to bat at it so she felt that he was showing his "handedness" early and that if he continued to use only his left hand by the 9-month well baby visit, then there would be reason for concern. Within a few weeks, however, Jacob had his first Infantile Spasm and we learned why he was only using his left hand. Nothing would have changed had we known a few weeks earlier about Jacob's stroke. I'm so happy not to have known for so many months. But I said some really stupid things that I now regret. I remember my mother was over at our house and I was trying to engage Jacob with a rattle and he just kept looking away. I figured that Jacob might not be as intelligent as Matthew was at his age and said something about Jacob being a football player because of his gigantic size. I didn't realize that he was disengaged because of the electrical storm brewing in his head. And I didn't realize that he had a slight paralysis on the right side of his body.

Since then I have been vigilant. I'd rather drive myself crazy being proactive about Jacob's health than deal with the aftermath of a missed diagnosis. But this pneumonia caught me off guard. Like I posted before, he had just seen his pediatrician on September 30th. She was on vacation the following week so I brought Jacob to another pediatrician who had seen Jacob before on October 8th. Neither of them heard anything in his lungs. And then two days later, we end up in the hospital. I have a degree in microbiology and understand the rate of reproduction in bacteria but... by Sunday he had a moderate bacterial infection in his right lung and a mild ear infection in his left ear. The incidence of pneumonia in young children must be very low because it never crossed any of our minds. I thought that maybe he had contracted the flu from the 2010 Influenza Vaccine. And he may have although I will never be able to prove this. I need to have someone or something to blame... Jacob had a runny nose and a slight cough when he saw his pediatrician on the 30th. My father brought him for me but I had written a note about checking him for an ear infection and listening to his lungs for congestion because I knew that if he had an infection, it had to be treated right away if he was still going to be able to have surgery a few weeks later. I also asked whether he should receive his immunizations and vaccinations before surgery. My father said she spent a long time with him thoroughly checking him out and found no infection. Just a cold. She said that he should get all of his shots because then he would be protected while in the hospital following surgery. Jacob seemed to feel better over the weekend but then his nose started running again sometimes clear, sometimes yellow. He started to have diarrhea and his cough became more persistent. Finally, on Friday when I picked him up from daycare, his face was red hot and he had a fever of about 101. I took him that evening to the second pediatrician who again found no infection. Just a cold. And he prescribed an inhaler because he thought his cough sounded like a wheezing cough although he did not hear any wheezing in his lungs. I didn't want to give him the inhaler until I was able to speak with a nurse in the pre-operative department at Boston to be sure that he could have this medication prior to surgery. But by Sunday I had a nervous breakdown because Jacob's "cold" was getting worse. We decided to give him the inhaler because he was in no shape for surgery anyways. He hadn't really eaten since Friday afternoon and was coughing up any fluids that he drank. I wished that I had given him the inhaler right away. It may have relieved some of the coughing. It also may have masked the pneumonia. I don't really know but I do regret that I was so focused on the surgery. So back to the vaccine. Jacob received the live intranasal vaccine. It is not supposed to be given to children under two-years of age or children with a history of wheezing. I believe that Jacob may have contracted the flu virus from this which primed his lungs for the pneumococcus bacterium. This type of pneumonia is a complication of the flu.

Although I may sound bitter because I am, the moral of my story really is that neither doctors or mommies are always right although everyone is operating with the best intentions. Vigilance. Education. Advocacy. I have come to understand how important it is for me to be a part of Jacob's medical treatment rather than a bystander. My mantra while he was in the hospital was NO REGRETS. We had them swab Jacob for MRSA, we had them do a second X-ray, we had them draw blood a second time to check his white blood cell count, we had them draw blood a third time to check his anti-seizure medication level. There is a fine line between careful and crazy but it is a line that needs to be crossed.

1 comment:

  1. Wow. How parallel Jacob & Trevy's early months were. At Trev's 6 month well visit I too mentioned that Trevor favored his left hand. My pedi rolled his eyes and said it was way too young to show preference. I'm fairly sure I thought he was wrong...but wasn't worried. Lefties run in our family.

    A few weeks later...Infantile Spasms.

    Although...finding Trevor's underlying condition was less clear cut than Jacob's. Trevy's 3T MRI revealed PVL...and the neuros all speculate that he "possibly" had a neonatal stroke. Of course...I won't know for sure until Heaven. But I've always been convinced Trevor has mild CP. He's just too darn strong (willed too) and so his right sided limp is almost too mild (even after brain surgery!) to notice with a casual observation. You know...most doctors appointments are short romps around small rooms. It's hard to pick up the slight dragging of a tired right foot. Or the way his right hand curls up and in sometimes.


    All that to say...I'm with ya, hon. Advocate. Urge. Follow that mommy instinct. All things you're already doing. And growing into doing with less you're growing into Jacob's (and Matthew's!) mommy.

    Love to you. Praying that Jacob gets and STAYS healthy...