If one more doctor pats me on the head>>>>>>>>>

[Guest guest]

Hi guys,

Kira is still in the hospital, going on 11 days now. If one more doctor pats me on the head I am going to scream!!!!!!!!!!! She is at Loma Hospital in Ca because Children's LA has had no transfer beds for over a week. On top of it all Dr. Boles is out of town!!!!!!!! We may never get her out of the hospital. Today was the final straw. The nurse was changing the lancet in her pen, and was poked by a lancet that did not have a lid on it. I have no idea why there was a lancet without a lid in her case but there was. I felt horrible about it. The nurse has to go through the meds and blood testing because of it and so does Kira, another blood draw to test for HIV, and 2 other things I am so tired I can't remember. After all the blood they have taken you would think that they would know she is HIV free and no hepatitis ect. The nurse has been a real witch to us because of it as well. I feel horrible and we certainly didn't put it in there to poke her with it. Enrique brought up the other two tonight who haven't seen their sister in over a week, and the nurse just lit into him about having kids on the floor. mind you 3 other children walked right behind her while she was chewing him out, and Kira's roommates parents had a party in the room literally cause the dad wanted to watch the stupid baseball game. 8 people whooping it up when she is trying to rest. I was so furious I just lost it on this nurse, I said if you want to talk about rules then enforce for all, what about the 2 people to a patient rule? There have been 8 people in her room for the last 3 hours hooping it up with the ball game. She just looked at me. I said her brother and sister have not seen her for over a week and standing outside the door to wave at her I didn't see as a crime as every other child in there has had siblings visit the same way everyday since we have been there!!!!!!!! Then last night the nurse wakes me up to ask me about the irregular heart rhythm she was seeing on Kira's monitor, I said maybe you should call the doctor and ask him about it. So when the doctor came in this morning I asked him about it and he said the nurse/do didn't chart anything about it and said don't worry about it "mommy" I hate it when the pull that "mommy crap!" This is the same nurse/doctor pair who when her IV blew she just took her off of the D-10 and 1 1/2 hours later I was interrupting the doctor while he was talking to his interns, another dirty look received from the doctor, to point out the fact that Kira was in a crisis because she had been yanked straight off the D-10 without weaning her an hour and one half ago. They were scrambling at that point and I was beyond irritated at this point. I told the doctor I wanted her transferred to LA, that his care of her was dangerous and unacceptable. He then calls me all nice to let me know that LA had no transfer beds and he really felt that they could do just as good a job of caring for her as LA could. NOT!!!!!!!!!! I am soooooo tired and fed up!!!!!! Dealing with three ill children is starting to get to me guys. I just can't take the doctor nurse all mighty God attitude anymore. I told the nurse who was giving us such a hard time yesterday that I had been doing this for 13 years now and she had been doing my daughters illness for 3 hours, now who is the expert in this room. She just looked at me and walked out. I sooooo want her out of this hospital!!!! This is the same hospital that darn near killed her when she was 6 due to their arrogance and took a court order to get her out of and transferred to Children's LA. Our local hospital transferred her to Loma against what we wanted and told us that we would have to take her AMA against medical advice to LA if that's where we wanted her to go because they said the insurance wouldn't pay for her to be transferred to LA. Now mind you once we got to Loma and told them we didn't ant her there and wanted her to be at CHLA, they had no problem getting insurance approval for a transfer, there just are not any transfer beds. There are beds available, but not transfer beds. Where is DR Boles!!!!!!!!????????? I hope Rick Boles is having a good time in Milwaukee, Poor Dr. Yano is saying why do your kids always do this when Dr. Boles is gone!!!!!!!!! I am asking the same question!!!!!!! LOL how dare the guy be gone when we need him!!!!!!!!LOL We so need more training on Mito out there so we don't go through this junk!!!!!!!! Thanks for letting me vent, It has been a long time since I have been this angry and upset. My hubby relieved me so I could finally come home and get some sleep, I have been working and then spending the nights at the hospital and my own system is so messed up. I am not healed from my own surgery yet, so I am whipped. Thanks again guys for a place to just feel free to unleash !!!!!!!

Hugs

O

[Guest guest]

,

Bless your heart. I went through so many of your same frustrations and aggravations when I was in the hospital last month. I'm so sorry you are having to go through all this and without your doc. too. I can't imagine staying in the hospital as long as you have had to with that type of care or lack or care and sleep. I was feeling worse when I left the hospital then when I went in just because of all the run around. Please know that I'm thinking of you and praying that things get better SOON!

Vent all you want. I completely understand. Hang in there and get some rest.

[Guest guest]

,

We all so understand what you are going through. Vent all you want. More training for Mito is so desperately needed. Especially the doctors and nurses who are taking care of our loved ones.

Take care of yourself.

Sending you a hug from New Hampshire, (where it is in the thirties this morning..)

Sherry

[Guest guest]

Good Morning ,

Sounds like Newton's Laws are working overtime with you.

So sorry to hear what you are going through. Has Kira improved at all in the 11 days?

I will be praying that Kira will get better to go home and to give you and your family strength through this time.

Darlene

[Guest guest]

Ditto that! These Dr's think they know all, well they just need to come live with us for a while and they will find out just how little they really do know.

, Keep venting, sometimes its the only way to deal with the crazy things that go along with this disease....we all understand.

Blessings,

Horsley

Re: If one more doctor pats me on the head>>>>>>>>>

,We all so understand what you are going through. Vent all you want. More training for Mito is so desperately needed. Especially the doctors and nurses who are taking care of our loved ones.Take care of yourself.Sending you a hug from New Hampshire, (where it is in the thirties this morning..)Sherry Please contact mito-owner with any problems or questions.

[Guest guest]

Hang in there . You are doing better than me because I probably would have decked someone by now. Do you want me to send over the Mito Mom Patrol?!!! Wouldnt that scare them to death! Know that I am praying for you and that things are much better soon.

Horsley

If one more doctor pats me on the head>>>>>>>>>

Hi guys, Kira is still in the hospital, going on 11 days now. If one more doctor pats me on the head I am going to scream!!!!!!!!!!! She is at Loma Hospital in Ca because Children's LA has had no transfer beds for over a week. On top of it all Dr. Boles is out of town!!!!!!!! We may never get her out of the hospital. Today was the final straw. The nurse was changing the lancet in her pen, and was poked by a lancet that did not have a lid on it. I have no idea why there was a lancet without a lid in her case but there was. I felt horrible about it. The nurse has to go through the meds and blood testing because of it and so does Kira, another blood draw to test for HIV, and 2 other things I am so tired I can't remember. After all the blood they have taken you would think that they would know she is HIV free and no hepatitis ect. The nurse has been a real witch to us because of it as well. I feel horrible and we certainly didn't put it in there to poke her with it. Enrique brought up the other two tonight who haven't seen their sister in over a week, and the nurse just lit into him about having kids on the floor. mind you 3 other children walked right behind her while she was chewing him out, and Kira's roommates parents had a party in the room literally cause the dad wanted to watch the stupid baseball game. 8 people whooping it up when she is trying to rest. I was so furious I just lost it on this nurse, I said if you want to talk about rules then enforce for all, what about the 2 people to a patient rule? There have been 8 people in her room for the last 3 hours hooping it up with the ball game. She just looked at me. I said her brother and sister have not seen her for over a week and standing outside the door to wave at her I didn't see as a crime as every other child in there has had siblings visit the same way everyday since we have been there!!!!!!!! Then last night the nurse wakes me up to ask me about the irregular heart rhythm she was seeing on Kira's monitor, I said maybe you should call the doctor and ask him about it. So when the doctor came in this morning I asked him about it and he said the nurse/do didn't chart anything about it and said don't worry about it "mommy" I hate it when the pull that "mommy crap!" This is the same nurse/doctor pair who when her IV blew she just took her off of the D-10 and 1 1/2 hours later I was interrupting the doctor while he was talking to his interns, another dirty look received from the doctor, to point out the fact that Kira was in a crisis because she had been yanked straight off the D-10 without weaning her an hour and one half ago. They were scrambling at that point and I was beyond irritated at this point. I told the doctor I wanted her transferred to LA, that his care of her was dangerous and unacceptable. He then calls me all nice to let me know that LA had no transfer beds and he really felt that they could do just as good a job of caring for her as LA could. NOT!!!!!!!!!! I am soooooo tired and fed up!!!!!! Dealing with three ill children is starting to get to me guys. I just can't take the doctor nurse all mighty God attitude anymore. I told the nurse who was giving us such a hard time yesterday that I had been doing this for 13 years now and she had been doing my daughters illness for 3 hours, now who is the expert in this room. She just looked at me and walked out. I sooooo want her out of this hospital!!!! This is the same hospital that darn near killed her when she was 6 due to their arrogance and took a court order to get her out of and transferred to Children's LA. Our local hospital transferred her to Loma against what we wanted and told us that we would have to take her AMA against medical advice to LA if that's where we wanted her to go because they said the insurance wouldn't pay for her to be transferred to LA. Now mind you once we got to Loma and told them we didn't ant her there and wanted her to be at CHLA, they had no problem getting insurance approval for a transfer, there just are not any transfer beds. There are beds available, but not transfer beds. Where is DR Boles!!!!!!!!????????? I hope Rick Boles is having a good time in Milwaukee, Poor Dr. Yano is saying why do your kids always do this when Dr. Boles is gone!!!!!!!!! I am asking the same question!!!!!!! LOL how dare the guy be gone when we need him!!!!!!!!LOL We so need more training on Mito out there so we don't go through this junk!!!!!!!! Thanks for letting me vent, It has been a long time since I have been this angry and upset. My hubby relieved me so I could finally come home and get some sleep, I have been working and then spending the nights at the hospital and my own system is so messed up. I am not healed from my own surgery yet, so I am whipped. Thanks again guys for a place to just feel free to unleash !!!!!!!Hugs O Please contact mito-owner with any problems or questions.

[Guest guest]

> O,

I cannot tell you the number of times I have right where you are.

I am so tired of having some 20 year old running 's case when

he has never even heard of Mito. Fight, fight, fight.I swear this is

all we do. We shouldn't have to do this to get good care for our

kids. Please vent all you need. I hope the situation improves. The

doctors always seem to be on vacation when we need them. When do we

get a vacation?

Dawn

[Guest guest]

AMEN to that!!

-- Re: If one more doctor pats me on the head>>>>>>>>>

When do we get a vacation? DawnPlease contact mito-owner with any problems or questions.

[Guest guest]

Thanks Ann Marie,

Yes, we do have a case manager, but sometimes she is just as bad as the docs. Dr. Boles and her have gone round and round many times. She is trying though to help us this time with the transfer, our main problem is the hospitals bed transfer quota is too high. If we take her out AMA Against medical advice, the insurance will not cover anything from that point on for her care for this illness. So we are really stuck. It is soooo frustrating. But thanks for your kind words of caring it truly helps. I am headed back to the hospital to relieve dad, I have gotten a bit of sleep and feel much better having vented to you all!!!!!!!!

Hugs

O

[Guest guest]

Hi there,

So sorry to hear Kira is still so sick.

Do you have an insurance case manager? Ours has helped up maneuver

hospital stays, doc visits, referral authorizations when we had been

denied over and over again. She has been wonderful at helping us

advocate and get the necessary care for Joe. You should be able to

request one if you dont already have one. Maybe it can help you get

the transfers you need when you need them. Ours even helped us get

medical records (not in her job description). She has really gone out

of her way to help us.

I understand so well your frustration with stupid doc/nurses. We have

had docs almost kill Joe too bcuz of their ignorance. It is so

frightening that they can hold so much power over our children's

medical care when they dont have a clue what they are doing.

Our family will keep you and yours in our prayers. Hope you get your

transfer or home soon!

(((((Huggs)))))

AnnMarie-

possible

mito

Married to my best friend Rick, mom of (14), (11),

Cassandra(5)

and Joe(3 1/2) - complex IV, lactic acidosis, CP, tethered chord

syndrome,

dysautonomia, and a smile that never quits

:-)

mitooggo@...

wrote:

Hi guys,

Kira is still in the hospital, going on 11 days now. If one more

doctor pats me on the head I am going to scream!!!!!!!!!!! She is at

Loma Hospital in Ca because Children's LA has had no transfer

beds for over a week. On top of it all Dr. Boles is out of

town!!!!!!!! We may never get her out of the hospital. Today was the

final straw. The nurse was changing the lancet in her pen, and was

poked by a lancet that did not have a lid on it. I have no idea why

there was a lancet without a lid in her case but there was. I felt

horrible about it. The nurse has to go through the meds and blood

testing because of it and so does Kira, another blood draw to test for

HIV, and 2 other things I am so tired I can't remember. After all the

blood they have taken you would think that they would know she is HIV

free and no hepatitis ect. The nurse has been a real witch to us

because of it as well. I feel horrible and we certainly didn't put it

in there to poke her with it. Enrique brought up the other two tonight

who haven't seen their sister in over a week, and the nurse just lit

into him about having kids on the floor. mind you 3 other children

walked right behind her while she was chewing him out, and Kira's

roommates parents had a party in the room literally cause the dad

wanted to watch the stupid baseball game. 8 people whooping it up when

she is trying to rest. I was so furious I just lost it on this nurse,

I said if you want to talk about rules then enforce for all, what about

the 2 people to a patient rule? There have been 8 people in her room

for the last 3 hours hooping it up with the ball game. She just looked

at me. I said her brother and sister have not seen her for over a week

and standing outside the door to wave at her I didn't see as a crime as

every other child in there has had siblings visit the same way everyday

since we have been there!!!!!!!! Then last night the nurse wakes me up

to ask me about the irregular heart rhythm she was seeing on Kira's

monitor, I said maybe you should call the doctor and ask him about it.

So when the doctor came in this morning I asked him about it and he

said the nurse/do didn't chart anything about it and said don't worry

about it "mommy" I hate it when the pull that "mommy crap!" This is

the same nurse/doctor pair who when her IV blew she just took her off

of the D-10 and 1 1/2 hours later I was interrupting the doctor while

he was talking to his interns, another dirty look received from the

doctor, to point out the fact that Kira was in a crisis because she had

been yanked straight off the D-10 without weaning her an hour and one

half ago. They were scrambling at that point and I was beyond

irritated at this point. I told the doctor I wanted her transferred to

LA, that his care of her was dangerous and unacceptable. He then calls

me all nice to let me know that LA had no transfer beds and he really

felt that they could do just as good a job of caring for her as LA

could. NOT!!!!!!!!!! I am soooooo tired and fed up!!!!!! Dealing

with three ill children is starting to get to me guys. I just can't

take the doctor nurse all mighty God attitude anymore. I told the

nurse who was giving us such a hard time yesterday that I had been

doing this for 13 years now and she had been doing my daughters illness

for 3 hours, now who is the expert in this room. She just looked at me

and walked out. I sooooo want her out of this hospital!!!! This is

the same hospital that darn near killed her when she was 6 due to their

arrogance and took a court order to get her out of and transferred to

Children's LA. Our local hospital transferred her to Loma

against what we wanted and told us that we would have to take her AMA

against medical advice to LA if that's where we wanted her to go

because they said the insurance wouldn't pay for her to be transferred

to LA. Now mind you once we got to Loma and told them we didn't

ant her there and wanted her to be at CHLA, they had no problem getting

insurance approval for a transfer, there just are not any transfer

beds. There are beds available, but not transfer beds. Where is DR

Boles!!!!!!!!????????? I hope Rick Boles is having a good time in

Milwaukee, Poor Dr. Yano is saying why do your kids always do this when

Dr. Boles is gone!!!!!!!!! I am asking the same question!!!!!!! LOL

how dare the guy be gone when we need him!!!!!!!!LOL We so need more

training on Mito out there so we don't go through this junk!!!!!!!!

Thanks for letting me vent, It has been a long time since I have been

this angry and upset. My hubby relieved me so I could finally come

home and get some sleep, I have been working and then spending the

nights at the hospital and my own system is so messed up. I am not

healed from my own surgery yet, so I am whipped. Thanks again guys for

a place to just feel free to unleash !!!!!!!

Hugs

O

Please contact mito-owner

with any problems or

questions.

[Guest guest]

hang in there karen, i know how hard it can be at times. jess just came out of a 5 day stay with alot of the same problems you mentioned. just try and take it one problem, one doctor, one butthead ooops i mean nurse at a time.

take care,

Michele mom to , 9 yrs old, mito- DNA deletion, intractable seizures, dysautonomia, MR., pdd, g-j tube, 02 dependent, BI-pap, ketogenic diet since 3/01, perm. foley cath for bladder dysfunction, heart rhythm drops during sleep. oh and lover of anything barbie, power puff girls, and loves to sing even if you can't understand the words.....lol