infusion stress

[Guest guest]

Hi All..

Well we had our infusion.. Let me just say that it was the longest 18 hours of

my life.!!! I'm exhausted.

We decided to be hooked to a monitor and blood pressure cuff instead of

them stirring every hour for vitals. This was no better. And let

me say that my old body was not cut out of waking up every hour.

We started thursday morning with a blown vein by a nurse who has never

stuck before. (never to happen again). Then she finally got him

on the 2nd stick. We started the IVIG at 2 ml per hour then progressed to

9 ml per hour. (he gets 150 ml) Anyway by the 15 hour or so, the vein

began to get tired from not having enough volume. So the last hour,

was squirming in pain and dying to get the thing out of his arm. So it appears

that an 18 hour infusion might help side effects but the veins arent up to it.

(we are waiting to see if we get that big migraine this time. If we do we are

going back to 12 hours for 's comfort and my sanity.)

OH AND PLEASE LET ME VENT, PLEASE!!!! As long as has been

going to this hospital (12 years now)..we have been going to the cafeteria for

supper

as long as he was not contagious or very ill. Well, we get this new nurse, who

blew

his vein, who decides everyone in the world has to abide by hospital security,

safety

policies. There was no reasoning, or calling the doc or anything. Just her

insisting

that she was right and we were wrong. Now, I say to a child who's never been

there and is very ill, so be it. But to a child who shouldn't be punished for

having

to get an IV infusion once a month, I dont think a trip to the cafeteria is too

much

to ask. We always take two people and we know how to run the pumps and

he has never had a severe reaction. Last time we were admitted a new nurse

yelled

at me for letting my son raise his bed up even though I was sitting next to him

and

having a conversation with him.. She said I wasnt looking out for his safety.

Holy

cow!!! I want to scream. Do these nurses think they are God? And have they

no compassion for the chronically ill? Are there no exceptions for frequent

flyers?

Even airlines make exceptions..!!

*whew* I feel much better now..

Hope all is well and thanks so much for your kind thoughts and prayers.

Oh, and one last thing..!! I bought a piano today and he doesn't know

it yet! He already plays trumpet, flute, and clarinet. Can't wait to see the

look on his face. One day you will be reading about him and his

accomplishments.

I just know it!!

Michele -mother to (12) IgG def, selective antibody def, asthma,

migraines, tummy troubles.

[Guest guest]

VENT AWAY MICHELE, JUST VENT AWAY!!!!

I know exactly how you feel, but from another aspect. OK, MY TURN TO VENT

(ALMOST A YEAR LATER),. When was born last may he spent 9 weeks and 6

days in the NICU to which I was there every day and several nights, and my

hubby was there at night and some days to always include weekends between

the two of us. THEN, he left on July 14th and starting on the 24th he was

repeatedly admitted for brain surgery every weekend for the rest of July and

August. Well, during his NICU stay, we loved it and the nurses and doctors

were great and they kept us pretty informed about everything. The

neurosurgeon team after the NICU was another story. They never told us

anything and even the nurses treated us like crap. Since we had 2 little

girls at home I spent the time at the hospital and running them back and

forth to sitters because my hubby couldn't get any time off (he is a

Marine), but everytime I even went to the bathroom or for coffee the nurses

treated my like I was a criminal. THEN, they discharged my son after I

informed the surgeon that his head had grown and he was showing symptoms of

swelling and his CT scan looked like crap. He told me to take my son home,

and that I didn't know what I was talking about and he was a doctor,

Argg!!! Well I took home and 3 days later he was readmitted to sit in

a bed for 4 days before any doctor would speak to us, to which they said he

needed surgery again. Well, my hubby and I were so depressed by the way we

all were being treated that neither of us could bare to go up to the

hospital, so we opted to call instead and check in on him for the weekend,

and also take the oportunity to go van hunting, something that we

desperately needed (we were a family of 5 driving in a mustang, not quite

safe). Well then we get a call from the social worker that we are negegent

and what are we doing to cause our son to need repeated surgery. OK, this

is where we finally went off. We filed a complaint and well, lots of nurses

and other staff got moved or fired, and (could be a coincedence) but the

chief pediatric neurosurgeon was replaced by s current doctor who

became the new chief. MMMMM. And ya know what, we get great care now,

HAHAHAHA!! I WONDER WHY!!! (Our names have been flagged at the hospital as

be nice to them they know what they are doing and talking about).

OK, I am done with my venting too. but , I would definitely talk to

your doctor or hospital admin department about letting your son move around

during IVIG treatments.

, wife to Preston, mother to Shelbie 8, Mandy 3 and 13 months

Moderator of Military EFMs, IVH-Hydrocephalus and NICU Families

Registered Chat for Preemies Friends and Family

Do not judge, so that you may not be judged.

For with the judgment you make you will be judged,

and the measure you give will be the measure you get.

why do you see the speck in your neighbor's eye,

but do not notice the log in your own eye?

You hypocrite, first take the log out of your own eye,

and then you will see clearly to take the speck out of your neighbor's eye.

7.1-5

sorry for the long post!!

[Guest guest]

Hospitals grrrrrrrrr

Can I vent too........

These people at hospitals think they rule the world and what ever they

do is right. We as parents have no rights or common sense. My turn to

vent

has ben neutropenic since about 6 months old. We were told that

she is not to wait in the waiting room at the ER. Well I brought her

in her lips were blue and having a hard time breathing. Told them that

she was neutropenic. They wanted me to wait in the waiting room!!! Bo

did they hear from me. Besides the fact that she couldn't breath. The

dr comes in to ook at her. Order breathing treatments after 3

treatments in 2 hours send us home no e-rays. did do a cbc absolute

neutrofil count ZERO and send her home. He said all she has is croup .

Said she was breathing better. was livid. (I didn't realizre I could

have said I wanted her admitted for observation) Well 3 hours later I

called the on call dr and demanded that he meet us at the hospital.

Needless to say not only did she have croup but an infiltrated lung.

She spent a week under an oxyen tent. And this dr sent us home.

This same hospital gave me such a time getting 's med records. I

called 4 times and left message on voice mail telling them hre name DOB

when I needed the records that I would sign the release when I picked

them up my home phone. When I went to pick them up they weren't ready.

Then said they can have them to me by Tuesday. Told them I didn't

need them Tues. It was too late then. Then for some reason on I

wasn't listed as next of kin. My husband was and they wanted him to

fax him a release. I was mad. I signed every authorization to be

treated. Needless to say they currired them over later that night.

===

and

(neutropenic and immune deficent)

mom to Evan 6, 4 and Abby Rose (almost 2)

_________________________________________________________

[Guest guest]

Dear ,

This is what we do. The boys get IV fluids along with the IVIG. Jake gets

it at a rate of 50 ml/hr and gets it at 40 ml/hr. We have never had a

vein problem during an infusion. The extra fluids seem to cut down on the

side affects as well. Jake use to get killer head aches and with the pre and

post meds (also the fluids) he does not get any side affects anymore. YEA.

They actually took him off of IVIG for last summer because of the side

affects. We had the worst winter ever, so I am glad that things are working

much better now.

Sue W Mom to Jake and

[Guest guest]

Dear Annette,

The boys get a 1/2 hour of fluids before we start the IVIG and then they

receive the fluids along with the IVIG. We use a double pump. They come

home on the IV fluids until the bags are empty. We stay at the hospital

(actually ours is in the hospital but at an outpatient infusion center) for

the IVIG. When that part is done we go home (IVIG).

Does that make sense? Hope so. It really works for us.

Sue W.......Mom to Jake and Chris