We've got some results

[Guest guest]

Today is the first day I've been able to sit down at my computer to

update people about Rebekah. Please read to the end. I need to tell

the story and get some help.

We saw the immunologist in Minneapolis on July 30th. He ordered a

LOT of tests, but was very optimistic that Rebekah could be handled

with antibiotic therapy alone. and I just didn't agree with

him. Rebekah has been on antibiotic therapy for the last 5 months

and the last two months had been rough.

A few days after we saw this doctor, the baby got sick with a mild

fever andthrew up. Two days after that, Rebekah developed a high

fever with severe headache. I have NO clue if these were the same

germs, but they likely are. If so, Rebekah's response to the germs

was completely different than the baby's response. The baby got over

it in about 24 hours. Rebekah slept 40 out of 48 hours and was

exhausted for three days afterwards. We decided to go back on the

infusions.

We called the HEM here in town and got scheduled for an infusion on

Tuesday of this week. Meantime, I called the Immuno in Minneapolis

and said that any test results he had and any suggestions to make the

infusion go smoother would be appreciated prior to Tuesday's

infusion. He called Monday night before the infusion with a

completely different view of Rebekah's condition.

All the news is bad (okay, her pancreas is fine, so that's the good

news). She is void in IgA, low in IgG 1 and 3 subclasses, she makes

absolutely no antibodies to diphtheria or tetanus despite 4

vaccinations and her WBC does not go up much when she is sick. The

complement studies weren't back yet. The immuno went told us that

Rebekah needed the infusions every three weeks for several years

before he would recommend further testing.

We knew in our hearts that the results were not going to be good and

that the immuno's optimistic attitude was not warranted, but hearing

the " news " formally was hard. The immuno, who does not normally

encourage ports on kids, recommended that we do a port.

We did the infusion on Tuesday. The charge nurse at the HEM's office

had booked a treatment room for all day for us despite not having

orders fore an infusion, because he (like us) KNEW that the infusion

was necessary. We got there at 9am and saw the HEM at 11 something.

The HEM was NOT NOT NOT in a good mood. A couple of his patients

were not doing well, but he was down right rude. He's been mad all

along that we went to Minneapolis to see a specialist. He walked

into the room, curtly demanded to know what our testing had shown,

declared that he already knew all of the bad news (which

we didn't since he had never done these studies), and asked up what we

wanted to do. I said " Infuse. " He said " When? " I said, " Today. "

He said, " I'll see if we can do it. " Then, he walked out. That was

it. Literally,one and two word answers or questions. There was no

discussion of amounts of gamma, frequency of gamma or management of

symptoms. NOTHING.

We didn't find out until hours later when the scheduling secretary

handed us the next appointment that the HEM wants to do 4 week

infusions.

I'm trying to be understanding about the HEM's attitude, but frankly,

it stinks. He was being a jerk because we got a second opinion.

But, I've got to swallow my frustration because he's the best we are

going to get if we do this local.

They had trouble starting the peripheral IV again and Rebekah was

uncomfortable all day. She said her had hurt and she wouldn't eat or

drink and couldn't get comfortable. It took them over 30 minutes to

get a second dose of Tylenol to her after I'd asked them for it the

second time. We're bringing our own Tylenol next time!

Rebekah had a good post-infusion morning yesterday, but developed a

severe headache in the afternoon. We did a dose of steroids, but she

complained of a headache all evening and night. After her nap, she

was very sweaty and, more alarming, she was pale. I'm talking

ghostly white. It was shocking. Everyone (the grandparents were in

town) were startled by her color. Then, last night at bedtime, she

told me that her heart tickled. Can she be having cardiac

irregularities from the infusion? Is that possible?

I

called the HEM and they said it was just an infusion reaction, but I

called the Immuno, too, to see what he thinks. What do you think?

Also, we are scheduled for a port surgery on Wednesday. What should

be expect for how long the surgery takes, how much she will hurt

afterwards, complications, size of scars (my baby's skin is so

beautiful--I don't want to cut it!). We don't get to meet the

surgeon until the morning of the surgery, so there's no one who can

answer my questions.

I know that it's totally dumb, but I don't want my baby girl to have

two big scars on her breast. It's dumb because she won't have a any

quality of life without treatment. She's been through a lot already

in her almost 3 years. She had more than 2 years of absolute neglect

by her original pediatric group then all of this testing and

infusions and illnesses and drugs. I hate to do more to her, but I

have to. But, I don't want her to have these big, honking scars all

over her breast and then to have to have new ports but in every

couple of years (according to the doctor). What if we

are wrong to push for infusions? What if she only needs antibiotics

and the port isn't necessary? What if I've imagined all of her

illnesses? I'm going NUTS trying to reason all this out. I lie awake

at night debating treatment plans. Ursula was right: see 3 doctors,

get 5 opinions. The immuno has lots of experience, but the HEM

probably won't be willing to treatment if the immuno writes the

orders. The HEM and the Immunologist have different treatment plans.

I have to decide which is best and fight for

that one. I've also been told that Rebekah may be worse, better or

stay the same, all in the same phone call. If she is going to get

better, why port? If she is going to get worse or stay the same, why

discontinue treatment in 2-3 years to test again. How am I supposed

to know which is the better treatment plan? How am I supposed to

balance the egos of the different doctors? Is life just going to be

one long illness and doctor appointment?

The rest of my kids are being neglected and I think that one is

seriously depressed by all of this family stress? I feel like the

captain of a ship in a storm and I'm supposed to chart of path of

smooth waters.

Okay, I've dumped what I've been thinking on your kind ears. I know

that many of you guys have little ones that are much sicker, but that

you can understand that when it's " YOUR " kid, it all is serious.

Please, kind souls, give me some opinions, or at least hugs today.

Pam

wife to (15 years)

mother to , 8, Hannah, 6, Rebekah, 2, and Leah, 1