Re: Fwd: [FODSupport.org] Hospital Nightmare

[Guest guest]

Jill,

I would call your patient avacote on this matter, I have been there before with the ER and you would be suprised to see how fast they move now when we come in. the Squeeky Wheel works. I'm sorry you had such a terrible time but if you don't stand up then the next kid with MITO that comes in that ER will be treated the same.

Valina, Maggies mom with Leighsjf2545@... wrote:

Please contact mito-owner with any problems or questions.

[Guest guest]

I'm sorry for your poor experience in the ER. I think it is common to be afraid of the backlash when one speaks up but in my experience if it is done constructively and calmly - it is usually respected and not held against you or your child. When I have concerns about my children's care or education I try to use a lot of I statements and "it is my perception that..." etc etc.....it seems to go over better and there is less defensiveness. I've spoken up a lot over the years and have only seen it help my children when done constructively. Early on I can not say I was always calm or respectful and though I don't think this was ever held against my children - it did prevent building relationships which is the name of the game when your child has a chronic illness. Your concerns are legitimate and you should feel free to pass them along to whoever the appropriate person is in the ER. I do have one question - why in the world is your ped sending you to the ER during daytime hours? Isn't there a lab you can go to for the blood work? Infusion clinic or even urgent care clinic (non ER) for the fluids? Typically the care happens in a more timely manner with less exposure to other illnesses if you can avoid the ER. But maybe where you live these are not facilities you have?Annewww.caringbridge.org/wi/zachsam----- Original Message ----- > > Hi all. Yesterday was another trip to the er for Matt. he has been running > 104 on motrin without any other symptoms. He wasnt really eating but was > tolerating his tube feeds nicely. I spoke with the geneticist Weds. night who said to > have my ped take a look at him in the morning. I could tell when he woke up > that he didnt look right, so I brought him right in and the ped. agreed. Off to > the er we went. This is where the nightmare began. After about 10 sticks, > they were finally able to draw his blood. I waited and waited for the results. In > the meantime, I bolus fed him,because they could not get the iv in. At one > point he actually said he was hungry and I asked one of the nurses if they could > get him something to eat. Of course they never bothered to get him anything. > here is this poor sick 3 year old sking for food and being ignored! Finally my > ped stopped by and she got him something to eat. His fever had gone up > again(they never checked it). I could tell by feeling him. I had to stomp my feet to > get motrin. Then they asked if he had peed yet. I said I would assume so--it > had been hours. Well, they never put a urine bag on him. Of course I carry one > in my bag (doesnt every mother?) so I got the sample myself. Finally 4 hours > after his bloods were drawn, everyone realized the tubes had never shown up at > the lab and nobody knew where they were. Can you believe that the nurse who > drew the blood finally admitted that she forgot to send it to the lab!!!!!!! I > thoiught I was going to kill someone. When the results finally came back, they > werent any good because the blood had sat for so long it had started to clot. > They told me that the results were inaccurate because the blood hd sat around > for so long. They wanted to repeat the tests, but at this point he looked > alittle better so I walked out. I had been there for 8 hours and accomplished > nothing. I feel like complaining to the head of the emergency department, but I > am afraid if I do that the next time we are there,we will be treated worse. Any > thoughts? Thanks for letting me vent. Jill, Matts mom, scad> >

[Guest guest]

Hi Jill. Wow can I sympathize! We have to ask for a neo-natal

specialist to draw blood from Abbey. Her veins are so hard to find.

And on more that one occasion they have " lost " her blood! It is so

frustrating to deal with people who have so little concern for these

kids who don't understand why they have to go through this. I'm soory

you had to deal with it but it does sound like you have a great Ped!

Hope Matt is feeling better.

>

>

> 'Emotional and Practical Support'*

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> Archives: http://topica.com/lists/FODSupport.org/read

>

>

> Hi all. Yesterday was another trip to the er for Matt. he has been

running

> 104 on motrin without any other symptoms. He wasnt really eating but

was

> tolerating his tube feeds nicely. I spoke with the geneticist Weds.

night who said to

> have my ped take a look at him in the morning. I could tell when he

woke up

> that he didnt look right, so I brought him right in and the ped.

agreed. Off to

> the er we went. This is where the nightmare began. After about 10

sticks,

> they were finally able to draw his blood. I waited and waited for

the results. In

> the meantime, I bolus fed him,because they could not get the iv in.

At one

> point he actually said he was hungry and I asked one of the nurses

if they could

> get him something to eat. Of course they never bothered to get him

anything.

> here is this poor sick 3 year old sking for food and being ignored!

Finally my

> ped stopped by and she got him something to eat. His fever had gone up

> again(they never checked it). I could tell by feeling him. I had to

stomp my feet to

> get motrin. Then they asked if he had peed yet. I said I would

assume so--it

> had been hours. Well, they never put a urine bag on him. Of course I

carry one

> in my bag (doesnt every mother?) so I got the sample myself. Finally

4 hours

> after his bloods were drawn, everyone realized the tubes had never

shown up at

> the lab and nobody knew where they were. Can you believe that the

nurse who

> drew the blood finally admitted that she forgot to send it to the

lab!!!!!!! I

> thoiught I was going to kill someone. When the results finally came

back, they

> werent any good because the blood had sat for so long it had started

to clot.

> They told me that the results were inaccurate because the blood hd

sat around

> for so long. They wanted to repeat the tests, but at this point he

looked

> alittle better so I walked out. I had been there for 8 hours and

accomplished

> nothing. I feel like complaining to the head of the emergency

department, but I

> am afraid if I do that the next time we are there,we will be treated

worse. Any

> thoughts? Thanks for letting me vent. Jill, Matts mom, scad

>

>