Saturday, March 24, 2012

It happened, our first MCADD hospital stay.

I know that I haven't been blogging. I have been lost in a sea of the routine. Funny how something significant will push you to the computer in hopes of sharing an experience hoping it may help someone else.

Our little buddy got his first bout of stomach flu. He is 13 months old and has been doing awesome. Luckily for us and unluckily for her, my sister was watching my kiddos. On the drive to my sisters he vomited, my hubby was hoping that perhaps he was just car sick. When I received the call at work my stomach sank, I knew better, our daughter had the stomach flu just days prior. But she also gets very car sick, I guess a tiny part of me hoped.

He wasn't car sick....
He vomited again so I asked my sister to throw him in the car and drive my direction (she is 30 mins from me and at least 45 from the children's hospital). My instinct told me to have her head to the children's hospital but the fear in me told her to stop at an affiliated hospital 20 min from her house and 10 min from me. Our biggest mistake. In hindsight I am sure he would have been fine, a good question for our geneticist who visits soon.

My husband and I arrived alerted them that he was en route. Of course they said there was nothing they could do till he arrived. He arrived and thankfully a nurse was waiting for him out front. I was impressed. Not impressed though that he had a million and one seemingly unimportant questions. Not impressed that the gal taking his glucose test said several times how great he looked and that his sugar was not too bad. (I was warned about these people). Not impressed that the ER physician casually sat down, reading our "recipe card" of instructions, stressing that he knew the importance of speed. (so why was he sitting sharing stories of his daughters diabetes?) On the plus side the nurse did start the IV on the first try. Our little buddy was upset to say the least, after what seemed like forever he finally quit screaming and kicking and fell asleep in my arms.

The ER physician returned after fluids were started and informed us that we were headed by ambulance to the children's hospital. He had contacted our geneticist and our pediatrician and they both agreed on the course of action. About a half hour later he returned to tell us they could not find a bed for us at the other hospital and that we would be staying put. They had a bed upstairs and we would be followed by the call pediatrician. He also pointed out that all the children at the other hospital were sick with respiratory illness and that the pediatrician here was great. Some of you may be gasping that I allowed this to happen. I did not know better. It was our first rodeo. Oh, the lessons I have learned.

A few facts before I continue. My son vomited approximately 5 times. It started at 6:45am and stopped at 10am (Thank you God that it did not last longer!!!) We were in the ER at about 9:30am and in a room around 11am.

To be honest I was a happy momma. He had his IV glucose and he was happy, IV and all. There were maybe two other children on the floor and the nurses were pleasant. We had a few visitors. OK we had a lot of visitors. I have a big close knit family! Our little guy was hungry but they were only allowing him clear liquids. They had informed us that the Dr would visit after his clinic hours and that we could ask then if we could move on to food. By 6:30 pm and no visit from the Dr we asked if he could at least have toast. Reluctantly the nurse called the Dr and he said we could start him on the BRAT diet (bananas, rice, applesauce, and toast), sweet.....his favorite things. So at around 8:45pm the Dr finally arrived. The rest of this I am not sure that I can do justice to. Bottom line the "unclaimed call pediatrician" no so great. I think more then anything he was pissed because my pediatrician "chooses not to see her patients at that hospital". I also think my hubby rubbed him the wrong way when he asked if we would not be seeing him again until 9pm the following night. He was very condescending and answered our questions as though it were none of our business or that we were idiots for asking. I had to remind him often that this was in fact out first hospital stay. More then once he mentioned that he would rather be home with his family. He also said he felt he was put in an uncomfortable situation because he does not know my sons history. Long story short by the end of his visit we were all uncomfortable and I was sobbing.

We stayed one sleepless night. The pediatrician wanted my son monitored all night. So he was hooked up to cardiac monitors, had a SPO2 monitor attached to his toe, and of course the IV in his arm. Monitors were coming unhooked and beeping all night. I asked in the morning why the monitors and was informed that while I was sleeping he could have had a seizure from hypoglycemia and that no one would know. I wish that I knew if the was standard practice. I was curious how he could get that hypoglycemic with IV dextrose, plus food, and no vomiting since 10am. I guess that is another question for the geneticist.

Luckily we went home the next evening so only one night in the hospital.

I have learned many things. A few of them....
1) go to the children's hospital
2) you have the right to fire the Dr given to you
3) 4 hours of vomiting = 2 days in the hospital

I feel pretty lucky that our learning experience happened with this illness because it was such a short one for our little guy.

Our pediatricians defense was that she doesn't see patients at that hospital because she will not admit to that hospital. Mostly because she wants pediatric nurses taking care of her pediatric patients. She said in 6 years she had never been told there was not a bed at the children's hospital.

It turns out that I have a friend who is a lawyer at the children's hospital and also for the one we stayed at because they are affiliated. We have had several phone calls from the director of pediatrics regarding our stay. Now we are on the hunt for a new pediatrician. Not sure that I completely blame our previous one but I want to find someone that has our back. Turns out that may be harder to find then I thought but more on that later.