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.

Dumping, Retching, G tubes, Mic-Key buttons and a Partridge In A Pear Tree....

*This details what happened the night we almost lost Makily, including the overdose and susequent MONTH LONG hospital stay......to see pictures of Makily's stoma, the moldy shower curtains and hear more stories about problems at Shands go to this entry.**


I was going through pictures of Makily from last year this time, admiring how much she has grown and how far she has come....but something continuously caught my eye that I couldn't ignore.....she had a tube in her nose. All of her Christmas pictures from HER FIRST CHRISTMAS are of her BEAUTIFUL, sweet face with an ugly yellow tube going up her nose. I grew to hate that nasty yellow tube. That tube reminds me of the worst month of my life....a month that began with one awful night in September......when we almost lost Makily....and I almost lost my mind.
It all started when I had noticed a little brown ucky stuff coming from the gauze I put around Makily's Mic-Key Button. Oh I guess I should warn you some of this entry will be gross and have some nasty descriptions.
When you have surgery to place a G tube they put in this long tube that just kinda hangs out. Then after 6 weeks they YANK (and yes I said YANK) the long tube out and put in a tiny little Mic-Key button. It's kinda like a little valve to the stomach that can be opened and closed and it sits almost flush to the skin. Much easier than the long tube hanging down and getting caught on everything. The brown stuff coming from around Makily's button didn't concern me too much because well it always had some type of discharge. I guess if I had to describe "normal G tube goo", I would say it's like eye boogers except it is around a button..hahahahahhahaaa....I told you this would be a gross entry. I just dismissed it and prayed that it would go away. Later that week Allen and I went to church. If Makily was fussy myself or Allen would go and walk with her in the lobby of the church. Makily started to get upset so this particular time Allen went out with her. Soon after an usher came in and tapped me on the shoulder saying that my husband needed me. I walked out and Allen was upset....Makily was screaming and her little white dress had blood all over it and was wet. I ran into the church and got my mom and dad. We were rushing out when one of the ushers stopped us, they wanted to pray for Makily. They stopped the church service that second and our Pastor, all the elders and deacons in the church came to us in the lobby, surrounded Makily, anointed her with oil and prayed. I was bawling. We got into the car and rushed to Shands. When we arrived at the ER they told us to have a seat....we waited for a while and they finally took us to the back. It was then I noticed a bright yellowish/green liquid leaking out from underneath Makily's button in addition to the bleeding. After giving Makily's medical history about 800 times the surgeons on call came into the room. They looked at Makily's tummy and decided to take out the button and see what they see. They took it out and the surgeon explained that there was a stitch left over from surgery that *USUALLY* comes out when the long tube is removed....but not in Makily's case...for some reason it had stayed in. He explained that it was working it's way out and causing all the problems. He removed the stitch and cauterized the area then replaced her button. He said the green fluid was bile (which was extremely acidic) and was expected since Makily had a pyloroplasty 2 months ago, which can allow bile easily flush up into the stomach. We fed Makily there and things seemed okay. I explained to him that Makily had an appointment with a gastro doctor the next morning. She had been having what's called DUMPING AND RETCHING SYNDROME. Dumping happens as a side effect of the pyloroplasty she had in July. Sometimes after having this procedure the pyloric muscle (opening from the stomach into the intestines) can open up too much thus "dumping" the entire contents into the intestine at once. This causes extreme pain, sweating, increased heart rate, and terrible diarrhea. Makily had this at least once or twice a day. She also retched. This was an awful thing to watch. Retching happens as a side effect of the Nissen she ALSO had in July. Since the Nissen binds the top of your esophagus to prevent reflux it also prevents vomiting. At times if Makily's stomach wasn't emptying like it should she would get too full and try to vomit.....so she would retch, Makily would retch so hard her face would turn blood run and she would try so hard to puke, this would soon be followed by hysterical crying. It was so horrible. We had an appt with the gastro doctor the next morning to discuss these issues and if the button was still a problem we would talk to him about it the next day. We came home and it wasn't long before the leaking started up again. I was ready to pull my hair out. The leaking was making the area around Makily's button VERY RED, RAW AND IRRITATED. Allen and I kept changing the gauze around it and trying to keep Makily happy. The more she cried the more stomach acid, bile and blood she was pushing out onto the raw skin around her button. It was an awful cycle. This went on ALL NIGHT LONG....it worsened when we fed her. Allen again was my rock and was up with her most of the night. He is such a strong man and awesome father. We went to the gastro doctor the next day. We explained all of our problems to him, the incident at the ER the day before, how it had continued all night and even showed him the cloth diaper we used to catch the bloody, green liquid coming from Makily's tummy. He said with all the issues she was having at once he would like to admit her to the hospital to try and solve things that way. It was too much to try to deal with as an outpatient. We agreed, I did have a few stipulations. I did not want Makily in a room with several other children that had ANYTHING that was contagious. I had gone through this before at Shands on the pediatric floor and did NOT want to deal with it again. He told me he would take care of everything. We were admitted to the hospital and immediately I was irritated because we were put in a room that can fit up to 4 kids. There was only 2 others in the room and one was being discharged. I was trying to be nice so I didnt say anything, I figured the others in the room had nothing to be concerned about or that Makily could catch. The nurse came in and I told her Makily needed a Kangaroo pump for her feedings and that I had no "attachment tube" with me because I had we didn't know we were going to be admitted to the hospital when we went to the doctor that morning. She said she would be sure and get it for us. A few doctors came in and I gave Makily's medical history another 800 times (doesn't anyone read the chart anymore?). Allen had gone home to get some sleep, he had to leave for work that night and he was very tired. The other mom in the room came over to us and started talking....she was VERY young. She asked how old Makily was and why we were there (yet another reason I didn't want to be in a room with others). I just said Makily had some tummy problems. She asked how old I was and I told her I was 27. She asked me why I waited until I was so old to have a baby. I was a little offended and confused. I told her I waited until I was married and had a home before I got pregnant. She told me that she should have done the same as she was only 18, had no husband or boyfriend and a sick baby all by herself. She explained to me that her baby had meningitis and that SHE had given it to HIM. I almost exploded right there. She explained that she had gotten it from riding the bus system and that she must have touched something that someone else had touched that had it. I was so mad that my baby was in a room with this woman and her baby. This was the second time I had this type of thing happen to me at Shands on their pediatric floor and I was very angry. The last time I had made a complete jerk of myself and demanded a different room. I figured I would be nice this time (never again). I went to Makily's nurse and explained my fears and she came in later and very kindly told the girl not to go NEAR me or Makily as she may spread germs. I was still VERY ANGRY, what kind of CHILDRENS HOSPITAL puts a patient with meningitis in with a "healthy" child? After 3 hours they finally got Makily's feeding pump and started to feed her. I had drifted off to sleep it was about 7:30 pm...I awoke and Makily was crying. She was covered in green bile and blood. I called the nurse and she called the doctors. They came in and tried to examine her but she was in so much pain she wouldn't be still. They ordered a shot of Morphine and said they would come back once it had taken affect. At about 8:30 Makily was given a shot of Morphine in her right thigh....she never calmed...the doctors came back and looked at her....ordered another shot of Morphine and said to put Maalox on the area around her button. (Maalox neutralizes the acids so they wouldn't burn her skin so much) She was given a second shot of Morphine in her left thigh and the nurse and I attempted to apply Maalox to her tummy. The more Makily cried the more bile and stomach acid would pump out from underneath the button and the Maalox would just wash right away. Makily slowly started to calm down and was calm for a total of 20 minutes. The on call gastro doctor came in during that time and said that we should continue feeding Makily through the button and applying the Maalox. If the leaking continued he would talk about giving her an IV. I explained I did NOT want to keep poking Makily to give her pain meds, she had already had 2 shots now. He said that he didn't feel she needed an IV at this point. They continued feeding Makily through the button and the leaking worsened, all the while Makily is screaming and crying in pain. They had used the wrong tube attachment with the feeding pump because they didn't have the appropriate one in the hospital. Because it was the wrong tube, it pulled on the button, which pulled on the skin to the opening in her stomach and it made things worse. He came back in an hour later because Makily was still screaming and the leaking had worsened. He said to stop the feedings through the button and he ordered IV fluids. I was relieved because I felt that feeding her through the button made the leaking worse. The nurses got the IV in place which just upset Makily even more. The entire time they were placing the IV green, acidic bile was gushing from under her button because she was crying so hard. The skin around her button at this point was just very red, raw and sloffing off in places. I can only imagine how painful it had to have been for her. After the IV was in place I spoke with the nurse and said that I didn't think the Morphine was working that Makily hadn't seemed to have gotten much relief from it. She agreed. I told her I felt the Maalox was a joke because before we could even get it applied it was washed away from all the stuff pumping out of Makily's tummy. I asked her to have the doctors come back and talk to me. They came back in and I told them that Makily had not stopped crying with the exception of about 20 minutes....it was about midnight at this point. They said they would give her some Morphine through the IV. I protested because I felt that it hadn't worked before, why give it to her again? They explained that since it would go through the IV this time it would work faster. I knew that meds through an IV work faster and more efficiently so I agreed. Makily was given a dose of Morphine through her IV. The screaming continued and the leaking and bleeding just worsened. I just held her while she cried and walked up and down the halls with her. I had bile, blood and all kinds of stuff all over me and her. I am sure it was an ugly site. I waited a half an hour for the Morphine to work and it didn't. So I asked the nurse to call the doctors back again. Remember this whole time Makily is screaming and the skin on her stomach is just sloffing off. I have to add this side note. The doctors ordering the Morphine and Maalox were the residents on call that night. One was a male and the other a female. This time the female resident came in alone to talk to me. Makily was crying and writhing in the bed and I was a mess at this point. I told her that Makily was IN MISERY and to please help her. She said she wanted to give her more Morphine. I honestly envisioned myself slapping this woman. Instead I said "don't you think we should try something else since the Morphine didn't work the FIRST 3 TIMES?" She said she wasn't sure what else she could give her and she would research it and come back to let me know. 45 minutes passed and I was angry Makily was still writhing and crying....I searched down my nurse and asked what was going on. She went to check and came back and showed me the order. It was for more Morphine. I was livid. The doctor didn't even have the guts to come and tell me what she was giving Makily, she just ordered ANOTHER dose of Morphine that had not worked the first 3 times and left. The nurse looked at me and said "she isn't going to order anything else". I finally gave in and said "okay but this is it, if this does not work...heads are gonna roll". They gave Makily ANOTHER dose of Morphine through her IV. I sat in the chair with her in my arms...crying with her. I was exhausted, angry and I felt so damn alone. Nurses and aids had been walking in and out of that room all night, seeing the pitifullness that was Makily and I and NOT ONE stopped to ask if they could help me. I had to hunt Makily's nurse down to get help. I didn't know what to do...I felt like I could have done better helping her at home. They were not helping her, they were letting her suffer and ignoring my pleas to give her something to make her stop hurting. Her stomach was a TERRIBLE mess and getting worse by the moment...Makily's breathing was getting rough because she HAD been screaming for about 5 hours and was exhausted to say the least. Makily is the kind of kid that will cry until you fix whatever is hurting....no one was fixing it, so she just kept crying thus causing MORE AND MORE stomach acid and bile to pump out of the opening, which then would cause the area to bleed and the skin to break down even further. It was a vicious cycle that I felt would have no end. 30 minutes after the last dose of Morphine I went to the desk and DEMANDED the doctors to come and see Makily again....I told the girls at the desk it was ridiculous that Makily had suffered like she had all night. I sat back in the room and cried again with Makily, an aide walked in and asked me if I wanted to go downstairs to get a coke and said she would stay with Makily for me. I told her thank you but I wanted to see the doctors. She said if I needed her later to let her know. That was the only time someone was kind to me on that pediatric floor. The doctors came in...both the male and female. I told the male resident that Makily had been screaming her head off and had never stopped but that SHE (and I pointed and gave the female resident a dirty look) wouldnt give her anything else but MORPHINE. He defended his counterpart by saying she had gone up on the dose and that was "appropriate". I said "yeah if it would have worked the first 3 times!!!!!" He then told me he could "totally snow Makily if that is what I was asking". I just looked at him and said "no sir, I don't want you to TOTALLY SNOW my 6 month old, I want you to take her pain away, look at her stomach!!!" Then he suggested ANOTHER DOSE OF MORPHINE. I told him absolutely NOT! He then said he would research what to give and come back...he also asked about her breathing, I explained that it was getting rough because she had been in pain for 6 hours and crying. If they could take away her pain her breathing would resolve. I have seen it happen with her many times before. He ordered an oxygen monitor and went to go figure out what to give her. He came back and asked if Makily had ever had Fentanyl before. She had when she was in the NICU and she hadnt had a problem with it. He said that is what he would give to her. They gave her the Fentanyl through the IV(we were still waiting on the oxygen monitor). Makily's entire body began to relax. She slowly calmed down within 2-3 minutes, her eyes closed and she seemed to go to sleep. I was so happy for a short moment. Finally my baby was getting some relief..PRAISE GOD FINALLY....Then all the sudden she opened her eyes and her pupils were dilated...she began flailing and bucking in the bed and her breathing sounded awful. Makily does this really cute thing with her mouth. It's a sucking motion that you will see some babies do in their sleep. Makily did this alot of the time...it's a comforting, calming thing for her. I noticed she started doing this VERY FAST, I had never seen her do it like that, she was panicking. I kept saying WHAT IS WRONG, why is she doing that. The doctors just stood by watching. They put oxygen on her face (she hates ANYTHING on her face) and she continued to kick and breathing was becoming more labored. Finally the man with the oxygen monitor came in...he was trying to get a reading but since Makily wouldn't be still it wasn't picking up. She was freaking out like I have never seen her do before. When the monitor finally picked up her heart rate was over 220 and her oxygen saturation was about 85% with oxygen on her face. I then began to panic. I then notice there are about 3 nurses standing around me and both doctors are watching everything unfold. I kept saying "why is she doing this, she had Fentanyl before and was fine". Then the female doctor explained that in the NICU Makily had most likely had it on a slow drip for sedation but now she was just given one dose all at once and so she was reacting differently to it. THANKS FOR TELLING ME THAT NOW!!! The male resident then told me that he wanted to transfer Makily to the PICU/SCU to be "monitored". I said fine. Suddenly all the nurses were up my behind getting Makily ready to be moved. Everything was moving so fast and I couldnt seem to catch my breath, why is the happening? We got up to the PICU and the doctors and nurses were moving very quickly and I began to realize how bad things had gotten. I just stood there frozen and felt like I wasnt truly there. I felt as if I was watching someone else's life fall apart on TV. They asked me to step out for a minute until they get Makily "settled". I went right outside the PICU doors and called Allen, he was just getting ready to leave for work...it was about 3am. I told him Makily was in the PICU and couldnt breathe. He said he was on his way. I hung up and called my parents and I don't even recall what I said I just remember my mother saying "we'll be there in a few minutes". I hung up the phone, sat down on the floor in the hall...alone and cried. The doctor came out and explained the situation to me. Makily's heart rate was soaring....she was fighting, crying and struggling to breathe. She wouldnt relax no matter what they did. My sweet, hard headed, fiesty baby girl was doing her damnest to continue breathing. He asked how long Makily had been crying and hurting. I told him since about 8 pm. He then explained that he was afraid if she continued to struggle like this that she would finally give up and either stop breathing altogether OR have a heart attack. I just sat there staring at him with his blood shot eyes. I remember the words "heart attack" ringing in my ears over and over and thinking "how can a 6 month old have a heart attack?" The room suddenly felt like it was closing in on me when he said what they needed to do. He wanted to intubate her and put her on a ventilator.....How am I in this situation I thought, she was breathing fine this morning....it was just a leaky G tube and some tummy problems. How did it come to this? Should I listen to this man? I had listened to the idiot resident doctors on the pediatric floor...that's what got me into this nightmare of a mess. I stared into his eyes and sensed a kindness that was comforting. I told him I wanted to hold Makily and to try and calm her. That I felt if I could just comfort her...she would calm down and her breathing would become easier and her heart rate would slow. I walked back into the room and Makily was still struggling and fighting. I tried but Makily was beyond comforting. She was so tired and out of it. Her stomach was a disaster and she was struggling so hard to get air. I quickly relented and agreed to let them intubate her. I made sure to explain that Makily was terribly hard to intubate, and to please be prepared. I walked out into the hallway and Allen was there. I then had to explain to him what was happening. It had all happened so fast that I don't think I truly took in everything until later on. My parents got there soon after Allen and I repeated the story to them. The nurse came out and said we could go in and see her. They had successfully intubated Makily....after several failed attempts. We walked in the room and I suddenly felt nauseaus. She had the tube down her throat breathing for her...she was still awake. She opened her big, beautiful, blue eyes, looked up at me and opened her mouth to cry....blood poured out of her mouth and no sound came out. I just started crying....I tried to stay right by her but the sight of her so sick, with that damn tube down her throat breathing for her again was too much for me to take. It was like we were back in the NICU all over again, werent we past this I thought? My heart was breaking. This was my fault. I had made the wrong decision. I shouldnt have let them give her all that Morphine. Maybe I shouldnt have let them give her the Fentanyl. Maybe if I would have tried to calm her down longer I could have and we could have avoided all this.....I was beside myself. I sat down and just cried. My father was VERY angry. You see my parents had time to process what had happened. I still hadnt realized that Makily had basically been overdosed on narcotics by 2 inexperienced residents. I was blaming myself though and not in reality. My dad asked the nurse who had intubated Makily and she told him. I remember hearing the anger and sadness in my dad's voice when he said "well he's a damn fool, a damn fool, look at all the blood in that baby's mouth". I asked my dad to stop. Not because he wasnt right but because I was about to loose it completely. I was about to loose myself and I didnt know what I would do. I was seeing visions of myself jumping out the window of that room. I kept trying to stand up by Makily's bed and comfort her but I couldnt look at her without bawling. I knew she would sense my sadness and fear. I just remember thinking my baby is 6 months old and has gone into respiratory distress 3 times now. 2 of those times were so bad she needed to be put on a machine to breathe for her. How much more of this could her little body take? How many more times would I find myself in this haze of uncertainty and fear? Would this ever end? What happened to my normal life? Why HER? WHY, WHY WHY!!!!?!?!!? I could feel the anxiety building and I was on the edge of breaking. Allen suggested I take a Xanax and go to sleep. I remember saying what a terrible mother I was because I wasnt strong enough to stand by her bed at that moment and comfort her. Allen said "I am here, if anything happens I will wake you up". My mom said "this is what I am here for Patricia, you need to take a pill and calm down". She was standing on one side of Makily and Allen was on the other...mom was gently stroking her hand and telling her "it's okay baby girl". Allen looked terribly upset and worried. I took 2 pills and escaped this horrible reality....at least for a little while.