How many kids have to die?

****This blog contains graphic picture, please view and read with caution*****


I have blogged in the past about the nightmare we experienced at Shands Children's at UF when Makily was three months old. I will give a short version of it here but to read the entire story go back to my blog entry here:
Narcotic Overdose
**Here is the short version:**

We were admitted for a leaking G tube and other gastrointestinal problems. Makily WAS NOT ILL, however she was in extreme pain. Her stoma looked like raw meat and was leaking CONSTANTLY. She screamed, writhed and cried for hours. The residents kept giving her morphine that gave her no relief. I asked them to try something else after dose number two did nothing. They gave her ANOTHER 2 doses (for a total of 4) before I refused to allow them to give her any more of a narcotic that was doing NOTHING for her. Finally after she had cried for many hours and had four doses of morphine in her they gave her Fentanyl, she went into respiratory distress and had to be put on a ventilator for three days. We almost lost her. We went in for a leaking G tube and 12 hours later she was on a vent?

This is what her G tube site looked like after three weeks there. This actually looks GOOD compared to what it had looked like. The redness had extended ALL THE WAY DOWN into her diaper area and the skin had sloffed off, it looked much like a chemical burn. The leaking never stopped. We left there with pneumonia, an NJ tube and a STILL LEAKING Mic-Key button. It was not until we went to APH in Orlando that it stopped leaking...and at that point it had to be removed altogether.



The problems continued during the month's stay at Shands. I could tell story after story of things that happened to us.

Last week this story was ran in our local paper.

Joey Schwartz age two was admitted to Shands for chemo. He was diagnosed with cancer at 10 weeks of age. During the chemo treatments he contracted a fungal infection. They amputated the child's leg and had to remove his palate and part of his sinuses to keep the fungus from spreading any further. His parents were informed that the chances of the fungus coming back are rather high and he has been sent home on Hospice. The mother complained about the "musty smell" and pointed out that there were quite a few molded ceiling tiles in his room. She was told it was nothing of concern. She has since found out that there were at least two more children with fungal infections there and they are under investigation now. to read the full story go here:
Shands Mold Problem

I saw the filth on the pediatric floor myself when Makily and I stayed there. The bathrooms were disgusting and the rooms weren't much better. Here are a few photos of one of the bathrooms.




So last week was the story on the fungus, then this week this story comes out:
Little Sebastian Ferrero was going to be tested to see why his growth rate was below normal. He was three years old and smaller than your average child. During the test he was given the amino acid Arginine. He was given more than TEN TIMES the dose he should have been given. Sebastian died two days later. To read the story and see photos go here: Sebastian's Story

Then I saw this report last night and I just can't believe it. Sebastian is NOT the first child to be given an overdose of Arginine. In August this child went in for the same test. He was given half the dose and began writhing and screaming on the floor. He was screaming "My brain is on fire". His mother insisted the test be stopped. She had the nurse unhook her child and they took him home. It wasn't until Sebastian died that this family was contacted and asked about how he was doing by Shands.
Click here to watch video: Overdose on Arginine

During the video there is a doctor that speaks He is the SAME ONE that diagnosed Makily's reflux and told us that it was severe enough that she could aspirate an entire feed in the night and drown in it....then he went on to say that if we didn't want to treat her reflux they would understand since she has Emanuel Syndrome, in his mind it was "okay" for us to let her esophagus BURN 24/7 and to possibly drown in her own vomit because she is a "genetics kid".

I do realize that everyone is human. Doctors put their pants on one leg at a time and they make mistakes. I personally believe that the majority of the problem at Shands is because they let the residents do WAY too much with not nearly enough supervision. I know that everyone has to learn but in some circumstances you should have someone checking and re-checking what is being done...ESPECIALLY WHEN DEALING WITH SOMETHING THAT IS LETHAL if given incorrectly like Arginine.

So our trip to Disney was ABSOLUTELY amazing.

I have not been that relaxed in FOUR YEARS. Makily was a DOLL and she had so much fun. She laughed, smiled giggled and had a big time! We spent most of our days at all the Disney parks and we also took some time our for swimming and lounging by the pool.

Nothing relaxes me like laying out in the sun with a Margarita in my hand.

We met up with the Stephanie (Maia's mommy w/Emanuel Syndrome)and family. We definitley had our moments of "wow's" but one in particular left me in tears. We had sat down to watch "Starship" play. I was sitting next to Stephanie when she reached out to hold Makily. I handed her over and Makily was ENTHRALLED with her. She just stared at Steph with the sweetest most angelic look as if she knew that Steph was a "special mommy". They laughed and giggled. It was way cute and SOOO touching. What REALLY struck me was watching Steph automatically do all the little things that Makily likes to get her to laugh. She knew what to do because she's been here before. I told Steph through my tears that when Makily was born and I found her c22 site that I NEVER could have imagined sharing a moment like that with her. Love you Steph.

I also wanted to say a special thanks to "Kim". I won't go into details but she is an amazing woman and her and I have chatted via email and over the phone...we have something rare in common. She found out about our Disney trip and sent us some gift cards to Disney. How kind and giving is that? Thank you so much Kim. I think of you and pray for you daily.

Foster care licensing is dragging on for what seems to be forever. I just got a call the other day from our agency wondering when we moved in our house. Apparently the people who lived here before us had 40 pages of incidences where the police were called here for domestic violence. She was VERY relieved when I told her we moved in 6 months after the last call was made. Our background checks otherwise came back clean. I have to call again tomorrow to find out when our home inspection is.