Just my story on why I think everyone should follow their instincts.
My youngest DS was BIG at birth (10lbs15oz with a head well above the 100th percentile) so our pediatrician monitored him and as it continued to grow (faster than it should) he ordered an ultrasound of the head/fontanel to check for fluid. It showed nothing so we let it go.
At 4 weeks old he choked pretty badly... turned purple and all that. When we started feeding him again he continued to choke a little on his formula and never really regained full color around his lips & nose so we made some calls and were advised to take him into the ER.
The ER there was nothing wrong with him and tried to discharge us. I stood my ground and argued with every nurse they sent in to try to convince me that he was fine and it was "no big deal"... A nurse said he had "fantastic" color and I told her that she didn't really have a clue unless she'd seen him every day of his life because the color he was, wasn't normal for him. I honestly felt like that crazy mother when I was there, I was crying and refused to take him home. I knew something wasn't right. I demanded they call the on-call pediatrician or I'd do it myself and I wasn't leaving until they were called.
Twenty minutes later Owen was admitted. I don't know if it's because I refused to leave and the on-call pediatrician didn't want to deal with me, or if he honestly did think Owen needed to be admitted. Either way I am so grateful I did not let the ER shove us out the door.
While admitted they did the tests to diagnose reflux. They found a heart murmur and did an Echo. Then they found hyperkalemia. His first draw was 7.4.... they told me anything over 7.2 has been known to cause cardiac arrest.
Our doctor did consultations with pediatric specialists at WVU's teaching hospital and ended up putting Owen on lasix to flush the potassium out of his system. He was in the hospital for 4 days.
Our doctor tried, and failed, to find a reason for Owen's hyperkalemia so I started a thread here, unsure of our next move, was reassured we needed answers and called Children's Hospital of Pittsburgh and off we went. We were there for all of an hour before they admitted him. He was 6 weeks old... one of the first things they did was look at his head growth order an MRI.
The MRI showed fluid around his brain. He was in Pittsburgh another 3 days and we had to go back to meet with a neurosurgeon about the fluid. He's been monitored monthly and his head growth didn't slow like it should have. A month ago we were told to prepare for a VP brain shunt. They said he got 1 more month to prove himself, as long as the MRI didn't show any signs of pressure.
Next week the month is up. I dropped all of my college classes and have focused on Owen. I've worked and worked and worked with him (with the help of a wonderful DIS'er who is a pediatric physical therapist, whom I met on a Wonder cruise in 2006!) to help him strengthen the necessary muscles and prove that he could develop normally and didn't need the surgery due to that. He has done WONDERFUL! He can now roll back to belly, belly to back and hold his head up with minimal wobbling. He sits in his Bumbo seat and leans over to play with toys and can still control his head. He can pass things from hand to hand. Little things that I never saw as that "big of a deal" we have worked together to accomplish in three weeks and prove that the fluid isn't affecting his development adversely enough to warrant surgery.
This past week we went for the final head measurement check and for the first time since he was born, his head is starting to curve in line with the percentile. The smallest growth recorded since birth AND a curve. It was better than we dreamed for.
So Wednesday we go to Pittsburgh where they're going to put my sweet little Owen under anesthesia and do another MRI. The MRI is the last hurdle to potentially avoid the brain shunt, he's blown the other two away over the last three weeks.
So I guess the point of my rambling is to always follow your instincts. If I had let the ER discharge us, we probably wouldn't have found the hyperkalemia until/if he went into cardiac arrest. Without the hyperkalemia we wouldn't have taken him to a Children's hospital where they found the fluid around his brain.
So while I felt like the crazy mother standing in the ER, crying, 5 months ago refusing to take my baby home, I am so glad today that I stood my ground!
..Owen in the hospital at 4 weeks:
My youngest DS was BIG at birth (10lbs15oz with a head well above the 100th percentile) so our pediatrician monitored him and as it continued to grow (faster than it should) he ordered an ultrasound of the head/fontanel to check for fluid. It showed nothing so we let it go.
At 4 weeks old he choked pretty badly... turned purple and all that. When we started feeding him again he continued to choke a little on his formula and never really regained full color around his lips & nose so we made some calls and were advised to take him into the ER.
The ER there was nothing wrong with him and tried to discharge us. I stood my ground and argued with every nurse they sent in to try to convince me that he was fine and it was "no big deal"... A nurse said he had "fantastic" color and I told her that she didn't really have a clue unless she'd seen him every day of his life because the color he was, wasn't normal for him. I honestly felt like that crazy mother when I was there, I was crying and refused to take him home. I knew something wasn't right. I demanded they call the on-call pediatrician or I'd do it myself and I wasn't leaving until they were called.
Twenty minutes later Owen was admitted. I don't know if it's because I refused to leave and the on-call pediatrician didn't want to deal with me, or if he honestly did think Owen needed to be admitted. Either way I am so grateful I did not let the ER shove us out the door.
While admitted they did the tests to diagnose reflux. They found a heart murmur and did an Echo. Then they found hyperkalemia. His first draw was 7.4.... they told me anything over 7.2 has been known to cause cardiac arrest.
Our doctor did consultations with pediatric specialists at WVU's teaching hospital and ended up putting Owen on lasix to flush the potassium out of his system. He was in the hospital for 4 days. Our doctor tried, and failed, to find a reason for Owen's hyperkalemia so I started a thread here, unsure of our next move, was reassured we needed answers and called Children's Hospital of Pittsburgh and off we went. We were there for all of an hour before they admitted him. He was 6 weeks old... one of the first things they did was look at his head growth order an MRI.
The MRI showed fluid around his brain. He was in Pittsburgh another 3 days and we had to go back to meet with a neurosurgeon about the fluid. He's been monitored monthly and his head growth didn't slow like it should have. A month ago we were told to prepare for a VP brain shunt. They said he got 1 more month to prove himself, as long as the MRI didn't show any signs of pressure.
Next week the month is up. I dropped all of my college classes and have focused on Owen. I've worked and worked and worked with him (with the help of a wonderful DIS'er who is a pediatric physical therapist, whom I met on a Wonder cruise in 2006!) to help him strengthen the necessary muscles and prove that he could develop normally and didn't need the surgery due to that. He has done WONDERFUL! He can now roll back to belly, belly to back and hold his head up with minimal wobbling. He sits in his Bumbo seat and leans over to play with toys and can still control his head. He can pass things from hand to hand. Little things that I never saw as that "big of a deal" we have worked together to accomplish in three weeks and prove that the fluid isn't affecting his development adversely enough to warrant surgery.
This past week we went for the final head measurement check and for the first time since he was born, his head is starting to curve in line with the percentile. The smallest growth recorded since birth AND a curve. It was better than we dreamed for.
So Wednesday we go to Pittsburgh where they're going to put my sweet little Owen under anesthesia and do another MRI. The MRI is the last hurdle to potentially avoid the brain shunt, he's blown the other two away over the last three weeks.
So I guess the point of my rambling is to always follow your instincts. If I had let the ER discharge us, we probably wouldn't have found the hyperkalemia until/if he went into cardiac arrest. Without the hyperkalemia we wouldn't have taken him to a Children's hospital where they found the fluid around his brain.
So while I felt like the crazy mother standing in the ER, crying, 5 months ago refusing to take my baby home, I am so glad today that I stood my ground!
..Owen in the hospital at 4 weeks:
I freaked and brought her back to the pedi. They said they didn't see what I was seeing. I demanded them to schedule an MRI. They did one of her head and found nothing! I then demanded to be referred to a pediatric eye doctor. He had a 3 month wait on an appointment, but I explained my situation and was able to bring her in the next day.
