Hospitals and E.R. visits (was Re: Zipporrah home again

[Guest guest]

Hi there;

Something that you can do to help with your local hospital and its E.R. facility

......

Ask your Mito doc to contact your hospital and send them a file to be kept

in the ER (they do this!!!) giving them instructions about such things as

General Anaesthesia, use of Lactated Ringers (Ringer's Lactate), use of Saline

with Dextrose 5 or 10, and oxygenation and hydration treatment. Your Mito

doc should also include your meds and details about *your* specific care

in an emergency.

Your Mito doc can also supply you with a wallet card containing vital emergency

information.

I had heard about doing this ... and doubted that they would do such a thing.

THEY DO!!!!! Actually, Kathy A. Graff and I wrote an article about Emergency

Rooms and it was published in the UMDF Newsletter, which I believe is available

on the UMDF website. Look in the Adult corner.

Jean Shepherd, List Owner

Adultmito list

Kim Novy wrote:

Darla, Darla, Darla what is up with those people??

Please let me know which hospital you were in as after we move to town,

I want to make sure we don't experience the nightmares you have. This is

just proof once again that we need some serious exposure to this disease

and training for our medical "professionals."

I'm sorry for the ordeal you faced over the last

week. I'm glad you are home and Porrah is getting better. Take care and

know you remain in our prayers.

Kim - Mom to and Lindsey

-----

Original Message -----

From:

Darla Klein

To:

List

Mito

Sent:

Monday, March 29, 2004 11:55 AM

Subject:

Zipporrah home again

We got home about 10 PM last night and Zipporrah is doing

much better. After arriving at the hospital she became very lethargic

from dehydration and we were thankful she was there to get some help.

I had to go to the Pediatrician and demand she be put in (they direct

admitted from there). They were still feeling she was doing ok on her

own. Sometimes I wonder what I have to say to get my docs to wake up!

If anyone has an article that would help to express the need to keep hydrated

I would love to get it! One of the hospital docs said it would be crazy

to give IV's to our kids with each virus because then they would be in

all the time. My response was detailed as to why they needed that hydration

help and I think he better understands now. Asenath usually is fine at

home because I can hydrate her through her g-tube. Porrah has already

been having problems eating and putting out enough urine, s! o she MAY need this added help each time. Every time my kids have went to ER and

been given a half-hearted effort or just an "overnight observation" they

have went home only to get worse and then have a stroke episode. I let

them know that and that I only come when I KNOW they need help. I mean,

really, I don't even go in when they have strokes unless they are very

bad! Do they want me to NEVER come in??? Sorry about the soap box guys.

We were going back and forth as to whether to place a NG-tube

because of her lack of nursing but she picked up again some yesterday

and so we opted to give it another try first. The docs said she needs

a swallow study and probably a NG-tube soon. The biggest problem she

is having again is the refluxing after each feeding. I think the virus

and all that phlegm is hindering her. I hope to talk to her OT today

about the issue. I don't want a NG-tube, ! but I certainly don't want

to go through what we did with Asenath eith er. The docs are much more

open to helping Zipporrah because of Asenath's struggles (thankfully!).

We see a pulmonologist tomorrow about the trachea vascular ring issue.

We hope to get some answers concerning that soon.

LASTLY, while in the hospital, Porrah's heart rate was terribly

irregular. She dropped as low as 43 bpm (at 5 month old) and struggled

to pick back up again. The nurses agreed as they listened to it with

their stethescopes. The docs weren't concerned though. This was the

first time Porrah has ever done this. She was also very cold to the touch

on her extremities. She only got better after I tried co-sleeping with

her as I have found this definitely helps to regulate breath patterns

and heart rates. It was scary and frustrating as I have seen this issue

with Asenath many times. The doc wasn't worried because she recovered

with only a little! help. The nurse said, "Well, if her heart does stop

at home, you can always use CPR and rescue breathing on her." She was

so casual as if it is such an easy thing to do on one's child and always

brings them back!!! I was shocked to say the least. I think disautonomia/autonomic

system failures are the cause as she also has a 96 degree temperature

normally. The nurse thought her being 104 then down to 96 was a shock

and threw her heart rate off. I just don't want to see it again! Realistically,

I assume I will.

Sorry this is long, I am sure there is much more I could

share. Thanks to everyone who has prayed for us. You guys mean more

to me than you could ever dream!

Darla: mommy to Asenath, Zipporrah, and the gang

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