Special Needs Parenting

When you have a very sick child, and especially when that child goes into the hospital, you are thrown into a world that you would never imagine. I'm sure the stories are different for every family that goes through this, but this is ours. I would love to hear from others about theirs.

When the hospital is a teaching hospital, it's more intense, in my opinion. On top of the hospitalist and phlebotomists, and ct scan techs, and x ray techs, and nurses, and admitting people, you have students. You don't know that they're students at first, because they just keep coming and you just keep answering the same questions over and over and you're worried about your child, and then another one comes in, and he has more tests and they kick you out for blood draws and when you finally get back in after listening to the screaming and they tell you it's just because he's being restrained because infants don't feel pain and then they leave you alone for a bit and then....if you're like me, YOU COUNT THE SPOTS FROM HOW MANY TIMES IT TOOK THEM TO GET THE BLOOD. In Adam's case, Jodi and I counted TWELVE STICKS. Tiny spots of blood where the doctor in training couldn't get the vein and then stuck him again. And again. And again. In his arms, his hand, his neck, his head. And now instead of being just scared, you get ANGRY........ and you realize that you have a great deal to learn. So I complained. Nothing could be done at this point, except that I said I didn't want him to touch Adam again. That's when I learned that he was a student. But he did not touch Adam again. 

The staff was also buzzing around and talking about this case, and we knew one of the nurses. At one time she had been in church with us. Apparently she was talking more than she should have, and I heard something being said about a lawsuit. So I went to the desk and challenged what I was hearing. She told me that because Adam's pediatrician had not admitted Adam right away when he was first sick, that we could sue him, and I told her that we had no intention of doing that. We had enough to deal with. But, because of her interference, the staff was on their guard around us. And I told the next few people who came in that we absolutely were NOT going to sue anyone. They pretended that they hadn't heard anything, but we could tell by the change in their demeanor that they were lying.

We didn't have enough to deal with, and now we had scared staff to contend with. This person was very unprofessional and full of herself, and caused us troubles on top of our troubles. But again, we learned. I don't know if she faced any repercussions from this, but I hope she was at least confronted by her superiors. Now we know about Patient Advocates, but we didn't know about them at that time. We learned something new after Adam was admitted.

Patient Advocates work for the hospital but are there for the protection and needs of patients who may have troubles while they're in the hospital. Hopefully, you will never need one. But be sure to ask if you do. 

I think I'll stop here for today. I'll be back tomorrow. Stop in if you like; our door is always open.

The Beginning of Hard Times

Adam was born on December 19, 1989. He turned 30 on his last birthday, and it's still hard to believe he's this age.He was a beautiful little boy with a full head of dark brown hair. 6lbs. 11 ounces. Tiny and perfect to all of us. He was two weeks early, and as far as we know, he had no health issues. But...he could not nurse because he kept his tongue firmly pressed against the roof of his mouth. The nurse told his mom, my daughter Jodi and me not to worry, but I knew something was not right, as he could not latch on. For the first few weeks we had to break the suction in order to get the nipple of his bottle into his mouth. I have often thought back over this, and wondered if this was an undiagnosed sensory issue. We never got to deal with this with the pediatrician, because he got sick when he was 4 1/2 weeks old. To keep this story brief, he had two visits to the doctor's office, and calls back and forth over the next couple of days. 

One evening while Jodi was feeding him, his left leg began to twitch, and I told her to shift him to see if that would stop. It didn't. The tremor quickly continued up the left side of his body. His temperature had dropped to 94.6. And off to Stony Brook we went. By the time we got there, he was one step above coma. Through hours of exams and tests, it was determined the he had meningitis and sepsis. Group B strep. This can and often does kill. He was admitted to the PICU. And the nightmare had just started. He seized for three hours the following morning. They finally got them under control with a full dose of Ativan, after many other drugs failed. (Detail for medical friends) He was there for 5 days.

We attended an Episcopal church at that time and I called for one of the priests to come and anoint and pray for him. I had been praying for him for days before he was admitted. His symptoms went up and down.....I heard the enemy hiss the word "meningitis" one of those long nights. I told the priest that I wasn't crazy, and to please pray to break this assault against him. He agreed, and he did. And he anointed Adam head to toe. 

After we were released from the PICU to the regular pediatric floor, my husband bumped into one of the nurses who had taken such excellent care of him. She was thrilled at how well he was doing, and told my husband that they never expected Adam to make it past the first night; they were sure he would die.

When we went home 2 1/2 weeks after being admitted, and I called the pediatrician's office to set up an after care appointment, I heard the receptionist excitedly telling everyone, "The miracle baby's mom is on the phone! The miracle baby's mom is on the phone!" 

As hard as this had all been, God is good. He saved Adam's life. There are many, many stories that are interwoven with this one; I'll tell some tomorrow. 

Adam IS a miracle. And he's had a few more. We'll get there. Well, I will. It's up to you if you will. But I hope you do.

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