Re: Day of Pain!

[Guest guest]

Capri, so sorry to hear that you and had such a hard time of it. Is he

having an endoscopy? What sedation will they use? Macey had one in May of

last year and did fairly well. They biopsied for the hpylori and looked at

her stomach muscles and a few other stomach things. All that turned up was

that she had some stomach muscle damage from her reflux and pneumonia's.

Her GI said that might cause intermittent aches and pains.

Good luck with your trip. Any chance of heading up the night before? We

also have a 2 hr drive ahead of us when we take Macey to Atlanta and we go

up the night before and stay at the Mc House that is associated

with the hospital. They only charge $10 for the night and provide you with

meals. You just have to tidy after yourself. Might be a thought. Driving

2 hrs before having to deal with all of this might prove a bit too

stressful.

Ursula Holleman

Macey's mom (3 yr. old with CVID, asthma, GERD, sinus disease, grade I

left kidney reflux, Sensory Integration Disorder)

ICQ # 28592349

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Day of Pain!

From: Peacvalley@...

had his IVIG today.... One horror story after another..... We used the

ELMA with siran wrap on his good arm.... All his veins in that arm floated

out.... two were great and collapsed as we tried to hook up to the IV. It

took 4 sticks (in his other arm) before we got a good vein. By then,

was hysterical, I took him outside after the third stick and he calmed down.

We were told to make sure the ELMA is only on for an hour because the veins

will constrict. Drink lots of fluids, which we do and pray..... Give me a

break, tell me something new. and I prayed together for his veins to

flow well and he talks to them on each stick. We finally get him hooked up

and the reactions begin.... At a rate of 12 no reaction, go to 24 burning,

eases off and then they increase to 36. He yells out and has intense pain

in

his arm, we back off to 24, apply ice, alternating with heat. Now has

only mild burning and a slight headache. Increase again, major pain, back

off to 24, mild pain and more head pain. (His bp and temp stayed within

range the whole time). Finally, informs the nurse " Don't touch that

IVIG, no more increases! It hurts to much. " Guess what, they actually

listened. We got to New Orleans at 9 am, IV started at 11 am and finished

at

5:20 pm. During this time his immunologist team comes in. (I know it

means

trouble, for usually only one sees him at a time.) We do an update to the

past 4 weeks and they call in a Ped. Gastroenterologist. The

Gastroenterologist wants to run a scope down 's throat to his stomach on

Monday. He was inclusive as to what he thinks 's pains are. Maybe

bacteria but possible bleeding ulcers also. I asked him about the blood

test

for bacteria and found out that with 's # s he would not have a positive

response to it. He hasn't has a response to any of his antibiody/bacteria

tests. Dr. , head of the immunology dept., also stated he wanted to

monitor more closely and possibly increase his IVIG to 3 times a week.

Scary, for I hear of children, including children in our network, being

backed off and their talking of increasing during a shortage. I go from

hearing for over a year that IVIG isn't available at this time to be here in

7 days to poss. increasing his amount and adding another specialist to his

list. What's the deal? Can your #s crash over night? I know these are

questions for his Drs. but it's been a lousy day and I need to vent. I hope

to get more info on Monday. Maybe some unanswered questions, sometimes

the

answers are scarier then the questions though. Dr. also agreed that

it

would be more beneficial for if we could find a Ped. in Long Beach in

case of an emergency. Jumping back, on Monday for his test, he has to be

hooked up to IV and can't have any fluids after midnight. We have to be

there at 6:30 am, leaving the coast at 4:30 am to make it and allow time to

find a good vein. Now that I have vented to the max thanks for being there.

I'm so tired of people telling me that it could be worse. Their right,

but

they don't have to watch their child continue to suffer. Pain is pain, and

when a child hurts, it breaks a mom's heart.

Capri, (mom to , Dx under investigation, PID, etc)

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