Blake's 1st Sub-Q....What a Day!!!!

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Hi Everyone..........

Yesterday was Blake's first Sub-Q. It took about an hr. to get set

up. We did use Emla Cream on the 4 sites that were used. We infused

83ml in 4 sites. Problem? It took 1 hr. to get 6ml in. Then the

pump kept beeping that immediate attention was needed. Well The Dr.

was at her wits end about the slowness that she called the infusion

company & told them that it was either 2 pumps with a double

connector or 2 days a week. That there was just too much volume to

infuse in a " quad " set for Blake. After much debate & Blake losing

his cool & mom having to leave, the Dr. & Nurse had to take out the

four needles & place a new set on & go from there....all in all it

made for one VERY LONG day.....8:30am to 3:30pm.

The infusion company suppying the IgG for Blake told the Dr. that the

pumps were really hard to come by & if we wanted to one could be

pruchased & the other one rented.....The Pediatrian went out of her

way & her office will purchase the 2nd pump for Blake!!!! Now this

makes it real easy for him to get it done in less than half time & he

can do his IV antibiotics through the pump rather than intermate

bottles!!!!

Reactions......Never anticipate them!!! We went in with a clear

positive attitude. Pretreated with oral Benadryl....Than God for

whoever invented the Benadryl strips(Pfizer.....we can get all we

want because Dad works for the company!!!!).Blake did start breaking

out. The Dr. gave another dose of Benadryl at about mid way. We

finished with Blake having a very swollen belly. he had what the

considered moderate welts at the injection sites. Later in the

evening, Blake had a rash that covered his belly, chest & whole back

side. He then complained that his throat was very itchy & his ears

were too.....I carried him to the Ped. at teh ER. She watched him

gave more benadryl & said he CAN do sub-Q but she willtake to

immunologist about seeing if we can get the Gammagard S/D & infuse it

as sub-q & do it with the pumps we already have. VivaGlobin is NOT

the brand for Blake because he was having a anaphalactic reaction.

Other than these, Blake has a whole lot more energy today & looks

like a sunburned lobster!!!!!!

Since this was his first sub-q, we were prepared for it to go longer

& a few issues but not what happened yesterday. But, we are forging

ahead & NOT giving up!!!!

Also in talking with Blake, Immuno. The Pediatrician has informed us

that Blake's immune Status has been changed to Severe Combined

ImmunoDificiency with T-Cell Dysfunction!!! he also has Paget-

Schroetter's Disease.....he has complete blockage of the Axillary,

subclavian & Brachyphalic Veins.

Thank You for the prayers & encouragement....keep it coming!!!

Mom to Blake 15 Severe Combined ImmunoDeficiency with T-Cell

Dysfunction, first Sub-Q done Yesterday!!!!!!(IVIG for 9 yrs. every

2 weeks)

http://www3.caringbridge.org/sc/blakester

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