Reflecting On A Nightmare

This post is about one of the worst weeks I have had. For those that have heard this story from my daily update e-mails, you probably don't want to read this. For me, this is my way to vent and clear my mind of the emotional roller coaster the past week as put on us. I am not writing this for any one's benefit, except mine. Read if you would like, dismiss if you like.


The nightmare began last week on Friday the 13th (fitting isn't it). We woke up at 4:30am, got Spencer up at 5:15am and arrived at the surgery center by 6am.
Spencer asleep in the car seat on the way to the surgery center.

Getting ready to go into surgery center.

Sitting in the little bench in the pre-op room.

In recovery room with daddy after a quick 15 minute surgery.

Getting to eat at McDonald's after being discharged. Eggs and pancakes, YUMMY!

That was all the normal part. Here is the abnormal part. Spencer went down for a nap at 12:30pm. By 6pm he was still asleep. We decided to get him up and he was cranky and had a 102 degree temp. After reviewing the discharge instructions, we called the Dr. B, the ENT doc and explained what was going on. He said to give him Tylenol and see how he is in the morning. OKAY - first of all, why in the heck do they give you a list of items to watch out for and list it as an emergency if all they are going to do is tell you to give your kid Tylenol, seriously folks!

I set my alarm and got up every four hours to give Spencer Tylenol or Motrin in order to keep his fever down. He woke up and did not eat or drink anything. He refused it all and he still had a fever. By mid morning he was just mad and cranky. I gave him another round of Tylenol and tried to lay him down for a nap. He didn't stay down long and woke up crying. He was hot, really hot. I checked his temp and it was 103.6. I called the ENT back and NOW he said to go to the ER.

The ER was a nightmare, I am skipping those details. All I will say is they are incompetent to treat a child! If our ENT hadn't told us to go to that specific hospital, I would have chose to go to the Children's Hospital. We left with a diagnosis of UTI and Flu. They put him on an antibiotic and an antiviral drug and told us to see our pediatrician on Monday.

Sunday came and it was bad. Spencer was badly dehydrated. We were force feeding him with a syringe (because the hospital didn't give him an IV) and still trying to treat the fever.

We got into the pediatrician's office on Monday morning and went through the details of the weekend. After reviewing the hospital lab work and notes, he determined that Spencer DOES NOT have a UTI or the FLU. Are you kidding me? Okay, now I am confused and mad. How do two doctors get a completely different diagnosis? The pediatrician changed his antibiotic to a broader spectrum antibiotic in hopes to kill whatever bacteria was causing the infection. He didn't know where the infection was coming from or if it was bacterial or viral either!

Monday night brought a whole new host of problems. Diarrhea, constant crying, not eating, not drinking.

The fever disappeared on Tuesday, so things were looking up, until a rash appeared and Spencer cried and fussed constantly the entire day. This is no joke, the entire day was spent holding him and walking or bouncing him to try and get him to calm down. For the first time ever with him, I took him for a ride to calm him down. When he did finally sleep, it was for 45 minutes. At the end of 45 minutes the poor boy woke up instantly crying and screaming. HELLOOOOO he is in pain. I called the doctor's office and explained to the nurse what was going on. I told her I suspected it was the antibiotic and she said it could be his stomach cramping from the diarrhea. Okay, we will stick it out. His attitude did not change all the way into Tuesday night and Wednesday morning. Justin and I took turns sleeping while the other one soothed (as best we could) him to sleep for 1-2 hours at a time. It was obvious to me that he was in pain.

Wednesday morning I called and told the pediatrician that we were coming back in. I also decided that I wasn't going to give Spencer ANY of his medication that morning. While in the lobby, Spencer's shirt got stuck on his jacket and I noticed that his entire back was now covered with the rash. HA - finally something to show the doctor that we were not crazy!

After a rather matter-of-fact discussion with the pediatrician, he agreed that Spencer is probably allergic to the new antibiotic. After further research on my end, I have concluded that is he isn't allergic, but suffered from severe side effects. It just so happens that the drug maker has an e-mail to the FDA to report any severe side effects, such as what he had.

SOOOO, what I have learned from this. Probably the most important thing is to trust my instincts. I know my child better than any doctor does. I am upset with the hospital and I will never return to it again if it is my choice. I learned that we have great family and friends who made us dinner (thanks Clay & Shyla), who e-mailed or called daily to check on him and those that said many prayers. No one should have to go through these types of issues, but everyone will at some point in their lives. I hope that everyone has a great support system like we do.