In the hospital

March 30, 2005

We will be praying for Zachary and your family.

God Bless

Amy (mom to Bradley IGA Def)

In the hospital

Zachary has been in the hospital since last Friday. On Thursday he

started running a temp, and I took him in to the peds on Friday.

Zachary never runs a temp unless its bacterial, so we were hoping it

was either a skin,throat,urinary, or ear infection. With everything

checking out fine, we were only left with the worse fear, which was

blood. Since Zachary has a port, he was admitted and cultures and

antibiotics were started. He does have a port infection, and today we

should find out what they plan to do. When it was put in, the dr who

placed it said, if it ever was to get infected it would need to be

pulled. So I'm expecting it, but not liking the idea of losing the

port, or having to go to surgery again. Has anyone ever had a port

saved?? Well I'm exhausted, we missed Easter, and my other children

are on spring break this week, so DH is having fun trying to keep

everything going. I'm lucky enough to have my laptop, but have quickly

learned how slow dial-up is. IT STINKS!LOL If you have any thoughts or

prayers, we surely would appreciate them. Thanks~MG

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

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March 30, 2005

In a message dated 3/30/2005 10:26:58 AM Pacific Standard Time,

mgt66@... writes:

If you have any thoughts or

prayers, we surely would appreciate them.

I'll be thinking & praying for Zach (and you).

Sandi

March 30, 2005

Hi MG!!

We are praying for you & Zachary!

From experience, Blake has had couple of ports " saved " . But not without

much worry & work. Blake has had 7 ports, 2 broviacs(this is what he

has now), & we can not count howmany PICC Lines.

The first Port Blake had was " saved " 3 times. This was when he was on

TPN. Blake likes his Broviac better than the ports. he(we)told that

the surgeon can " remove " the line in the office to keep him from being

put to sleep(Ursula can probably tell you more of the removal of these

as compared to the Port). The last Broviac was actually pulled after 4

months (due to Candida, none of lake's Drs. will try to save a line

with yeast in it!!!) right in the office of the Pulmonologist after it

was determined that the Candida was in his blood also.

Blake was put to sleep for the removal of the ports.

When the ports had been saved, he did 2 months of IV antibiotics.

Usually after 4 weeks it cleared but they kept the antibiotics going

for 2 more weeks, " just in case " . With Blake being 13 now, he helps

make the decision as to " what line " is placed. We try to give him as

much say in this as we possibly can. To me it is more work because you

have to flush the Broviac every day. The port is only flushed after his

meds. are done. But to keep Blake happy, we as parents had to do what

he needed not what we wanted.

One other note, Blake does have a rare blood clotting disorder

that " helped " him lose 3 ports & all of his PICC lines. At this point

in our lives Blake was having to have the PICC lines replaced everytime

we turned around. So, when his last one was placed & lost after 8 long

months(he had to have several replaced between last june-dec because of

clotting & him being on IV antibiotics & every-other-week IVIG). He

does take Sub-Q Lovenox & so far he has had this line since Dec 7th. &

it is doing very well!!

Good luck & let us know!!

(mom to Blake 13 CVID with Complete T-Cell Dysfunction, Severe

Asthma, Asperger's Syndrome, GERD, Sensory Motor Skills Intergration

Delays...........Loves to read, Hates Math, & really believes he is 21

yrs.....puberty....gotta love it!!!!)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> Zachary has been in the hospital since last Friday. On Thursday he

> started running a temp, and I took him in to the peds on Friday.

> Zachary never runs a temp unless its bacterial, so we were hoping it

> was either a skin,throat,urinary, or ear infection. With everything

> checking out fine, we were only left with the worse fear, which was

> blood. Since Zachary has a port, he was admitted and cultures and

> antibiotics were started. He does have a port infection, and today we

> should find out what they plan to do. When it was put in, the dr who

> placed it said, if it ever was to get infected it would need to be

> pulled. So I'm expecting it, but not liking the idea of losing the

> port, or having to go to surgery again. Has anyone ever had a port

> saved?? Well I'm exhausted, we missed Easter, and my other children

> are on spring break this week, so DH is having fun trying to keep

> everything going. I'm lucky enough to have my laptop, but have

quickly

> learned how slow dial-up is. IT STINKS!LOL If you have any thoughts

or

> prayers, we surely would appreciate them. Thanks~MG

March 30, 2005

Sending get well wishes.....Sometimes they treat the infection, but I have

mainly seen that they pull the line and then replace it.....Wishing for the

best for you.

Quoting mgt66 <mgt66@...>:

>

> Zachary has been in the hospital since last Friday. On Thursday he

>

> started running a temp, and I took him in to the peds on Friday.

>

> Zachary never runs a temp unless its bacterial, so we were hoping it

>

> was either a skin,throat,urinary, or ear infection. With everything

>

> checking out fine, we were only left with the worse fear, which was

>

> blood. Since Zachary has a port, he was admitted and cultures and

>

> antibiotics were started. He does have a port infection, and today we

>

> should find out what they plan to do. When it was put in, the dr who

>

> placed it said, if it ever was to get infected it would need to be

>

> pulled. So I'm expecting it, but not liking the idea of losing the

>

> port, or having to go to surgery again. Has anyone ever had a port

>

> saved?? Well I'm exhausted, we missed Easter, and my other children

>

> are on spring break this week, so DH is having fun trying to keep

>

> everything going. I'm lucky enough to have my laptop, but have quickly

>

> learned how slow dial-up is. IT STINKS!LOL If you have any thoughts or

>

> prayers, we surely would appreciate them. Thanks~MG

>

> This forum is open to parents and caregivers of children diagnosed with a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

> To unsubscribe -unsubscribegroups (DOT)

>

> To search group archives go to:

> /messages

>

March 30, 2005

We will keep Zachary in our thoughts and prayers that they can just treat

the infection and keep the port.

Amy,

mom to , 2 years old, CVID, asthma, GERD, on prophalatic abx

(rotating Septra and Amoxicillin) and IVIG (Carimune NF) every 4 weeks,

flovent, xopenex, albuterol and claritin. Allergic to milk, soy and latex..

among other things. Visit Nick's Caringbridge site at

http://www3.caringbridge.org/ne/nicholasb/

In the hospital

>

> Zachary has been in the hospital since last Friday.

April 1, 2005

We are praying for Zachary and your family.

mom to victoria