Re: [Mito} A whine and a GRRR!

[Guest guest]

Anne,

A great big hug going your way. I hate that Asher is having problems

and that they made a grand error with the MicKey Button. Some drs

might prove to be human, if they'd only fess up to their mistakes.

Don't worry about venting, that's what we are all here for. I am glad

he has gained weight. Praying for you.

Ann

> Hi all,

>

> I guess it's vent time for me. What a day! Last week, the surgeon

put in a

> too small and too tight MicKey Button in place of Asher's G-tube.

We had some

> bleeding in it this weekend and our ped gastro (whom I love!) told

us it was

> too small and too tight (which of course was denied by the surgeon)

and ran the

> risk of creating an ulcer. Our ped gastro said that he has been

woken up in

> the middle of the night by emergency b/c of kids vomiting blood b/c

of too tight

> buttons. So... b/c of insurance concerns, he had us go through the

ER today

> to get it changed. I'm never thrilled with hospitals but the ER is

probably my

> least favorite place to be. And, while we were there, the ER doc

listened to

> Asher's lungs and ended up ordering a chest x-ray to rule out

pneumonia. Ash

> did not have pneumonia but some other viral thing that is now

requiring

> nebulizer treatments, etc. I felt so bad that I hadn't picked up on

his wheezing! My

> older son, b/c of his primary immune deficiency, usually gets so

much sicker

> (with high fevers, green gunk, etc.) than Asher was that I just

didn't worry

> about his cough. Anyhow, to make matters worse, while I was at the

ER, I

> received a phone message from Dr. S's office letting me know that

Asher's tests will

> not be finished until late next week and then it will be more time

until the

> report is written. I had been told last week that all of Asher's

tests were

> finished but, apparently, Dr. S's employee was incorrect and it

won't be for

> another week and a half. GRRRRR!

>

> I struggle with feeling guilty again for whining and being angry

b/c I know

> we could be worse off. Asher has gained almost 2 pounds!!! Yea!

Although he is

> really almost totally fed by liquid. He continues to look pretty

strong

> compared to before his G-tube. But, I'm just tired, tired, tired of

spending my days

> and weeks at the hospital or in doctor's office. I hate to say

this - but the

> brain drain of waiting in waiting rooms is getting to me!!! And I

feel so

> much tension when I think Dr. S's report is going to be here soon

and then it

> gets delayed. I go all over the place in my head at night - from

being afraid of

> what his diagnosis is going to be all the way to being scared he

won't be able

> to find what's going on with my son.

>

> I've had a few good tantrums (in private) and it might be time for

another

> one. Thanks for listening to this again!

>

> Anne R

[Guest guest]

>

> Anne R,

I am sorry that this has continued to drain your brain. Somedays

I don't even remember my own name (hey that rhymed!). They make you

wait in the waiting room with a primary immunodef? We always have

the doc call and explain that (neutropenia and selective IGG)

cannot be in the waiting room. We are put in small room usually only

for a short time, then into a room. It still is a long wait

sometimes, but it is much easier waiting in your own room with a tv.

So, was the button really too short?

Take care, Dawn

[Guest guest]

Yes, waiting can be a problem. I guess each person is different when

waiting for results; especially when they are the life of your child.

We have a partial diagnosis for Leah of complex I. But they sent

her skin cells over to Amsterdam to see if she had GAII. Well it took almost

a year for those results. I guess I would forget about them and it

wasn't until February that I had asked about them and then again in April.

May be I'm too patient. But I think of all the testing that must

be done in Atlanta for mito and may be other diseases. At least the

tests are being worked on. I think we need to look at the whole picture;

lab techs going on vacation, may be illnesses, etc. Little things

that can throw off everything by a day or two. The only thing I would

like to know is communication. That may be they are running behind

in their final testing; or may be they had most of the testing done and

found out that there were two tests to go and that's why it will take longer.

Plus the person who needs to type of the dictated notes from the doctor.

They all play an important part in getting the results to the doctor to

you. But it all adds up if you are spending time in doctor offices

and ER waiting rooms can take its toll on a person's brain and body.

But at least you got what you needed by going to the ER even though you

didn't want to; to get the results your doctor needed. It's sad that

the one doctor would not listen to the advice of the other doctor.

That's where egos come in to play. Bad egos. But so glad you

can see a bright point here that the doctor caught something that you had

missed. And now you know what to look for. We are so use to

the classic signes in some of our kids that we forget each kid will present

some thing differently. I know we do when it comes to sinus infections

and even strep throat. And yippee for gaining 2 pounds. The

positive of this again you found and to let us know. That is so cool.

Keep us updated on the doctor saga and hope things continue to go in the

right direction for you Anne and that you will get the results soon and

the answers you are looking for.

Nerenhausen

mom to Leah

AReckling@... wrote:

Hi all,

I guess it's vent time for me. What

a day! Last week, the surgeon put in a too small and too tight MicKey

Button in place of Asher's G-tube. We had some bleeding in it this weekend

and our ped gastro (whom I love!) told us it was too small and too tight

(which of course was denied by the surgeon) and ran the risk of creating

an ulcer. Our ped gastro said that he has been woken up in the middle of

the night by emergency b/c of kids vomiting blood b/c of too tight buttons.

So... b/c of insurance concerns, he had us go through the ER today to get

it changed. I'm never thrilled with hospitals but the ER is probably my

least favorite place to be. And, while we were there, the ER doc listened

to Asher's lungs and ended up ordering a chest x-ray to rule out pneumonia.

Ash did not have pneumonia but some other viral thing that is now requiring

nebulizer treatments, etc. I felt so bad that I hadn't picked up on his

wheezing! My older son, b/c of his primary immune deficiency, u! sually

gets so much sicker (with high fevers, green gunk, etc.) than Asher was

that I just didn't worry about his cough. Anyhow, to make matters

worse, while I was at the ER, I received a phone message from Dr. S's office

letting me know that Asher's tests will not be finished until late next

week and then it will be more time until the report is written. I had been

told last week that all of Asher's tests were finished but, apparently,

Dr. S's employee was incorrect and it won't be for another week and a half.

GRRRRR!

I struggle with feeling guilty again

for whining and being angry b/c I know we could be worse off. Asher has

gained almost 2 pounds!!! Yea! Although he is really almost totally fed

by liquid. He continues to look pretty strong compared to before his G-tube.

But, I'm just tired, tired, tired of spending my days and weeks at the

hospital or in doctor's office. I hate to say this - but the brain drain

of waiting in waiting rooms is getting to me!!! And I feel so much tension

when I think Dr. S's report is going to be here soon and then it gets delayed.

I go all over the place in my head at night - from being afraid of what

his diagnosis is going to be all the way to being scared he won't be able

to find what's going on with my son.

I've had a few good tantrums (in private)

and it might be time for another one. Thanks for listening to this again!

Anne R

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with any problems or questions.

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