What a Week!

[Guest guest]

Thursday Sept 28th Lochlan had a port put in. Even knocked out for

the surgery it took them until the 4th stab to start an IV. If they

can't start an IV on him unconscious then I guess we needed the

port. I know its controversial. It was VERY scary for me and a

really hard decision. Its been a tough week, so please refrain from

shaming me ok? I never did get an answer from Dr Berger on why he

wouldn't do Sub-Q (the local immunologist supposes it has to do with

his Keratosis Pilaris, eczema, and frequent skin infections with

strep and staph and recurrent cellulitis). But anyway since we HAD

to do IVIg then really the port was the only option for him. He has

NEVER had blood drawn in under 3 pokes, NEVER had an IV started in

under 4. He was septic and it took 23 pokes to get the IV started,

40 hours and they STILL hadn't been able to draw blood. He is a HARD

start.

The surgery was hard. I was SICK with worry. He couldn't eat after

midnight and surgery didn't start until after NOON! Thats so hard on

a toddler Then the 45 minute operation took 2 hours. The 15

minutes it was supposed to take to get him off the vent in recovery

took an hour. I was beside myself. But after that things went fine.

He HATES medicine and fought us on it, but he did hurt and sometimes

we needed to dose him. Saturday he inhaled some codeine. He ended up

in Childrens Hospital with aspiration pneumonia, a double ear

infection, and a UTI. It was a 5 day stay. His neutrophil count was

220 when we left. IgG was 140.

So Friday we started IVIG we are supposed to get gammunex, but they

were out and decided he needed it ASAP so he got gammaguard instead.

Is there a big difference between the 2? We'll get gammunex next

time- is switching really a big issue? Can IVIG help boost his wbc

and neutrophil count? They said it won't help the complement

deficiency but will help the select antibody deficiency.

The infusion went really well. Accessing the port is so easy, fast,

and painless for him. I could just cry its so easy. He's been

through so much and to see one painless poke yield blood draws and

start an IV was just amazing for us.

Thanks for listening

-Kimmi (mom to Connor 8 autism, dyslexia, neurofibromatosis, mild

hearing loss; Skye 7; Trew 3; Lochlan 20 months

hypogammaglobulinemia with complement deficiency, select antibody

deficiency, neutropenia, seizures, global delays, limb length

discrepency, torticollis, visual delays, hearing loss one-sided,

anemia, the list goes ON)