Donovan

[Guest guest]

During IVIG yesterday, we had a few complications so our ID dr had to

come in and see us. We discussed Donovan, and I told him that he has

had a sinus infection since the beginning of school, been on Bactrim,

then zithro x 3, back on Bactrim for the last 2 weeks, and then

supposed to be on a prophylaxis dose of the bactrim for the winter as

per his pulmo. When we tested his IG's last Feb, he was low end normal

with low IgA and IgM. Previously, he had very low IgG and subs.

However, last Feb, he was doing fairly well clinically. Over the

summer he did fairly well. But now it seems he back to his " old

self " ----infection after infection, or infections that wont go away.

So, instead of waiting until his appt for recheck in Jan, he wrote out

a script for bloodwork up near home to re-test his Ig's now. He said

if he is doing worse clinically, we may as well check him and if he

needs IVIG, then get started now, vs. waiting until the end of Jan.

I know this has been in the back of both our minds the whole time, but

the possibility of 3 kids on IVIG when we can barely handle two on it

is mind boggling. Just yesterday, in order to get thru it, Savannah

had to take a full tablet of Ativan, of course got loopy as all get

out, had to keep holding her up or making her sit, then she screamed

her head off and kept slapping at the nurses during the stick and we

had her devel. behav. ped with us to help. Then Brennan was sick with

a sinus infection going in and in a bad mood. Took us forever to get

his line and then 6 vials of blood bc he is being worked up for

autoimmune problems and he was screaming so much the blood was just

drip, drip, dripping at such a slow rate it seemed like forever. Then

a child in the infusion rm had a serious reaction and everyone had to

leave to take care of her(which I totally understand)but that left me

with a screaming 4 yr old with an IV started in his hand who would NOT

hold still. Then they finally finished that, he fell asleep then had

this horrid thing like a night terror where he was not fully awake but

his eyes were open and he was screaming like crazy that he hurt so

much and we were trying to locate the source of his pain and his

screaming hurt savannahs headache so we had to take him to a different

room and in the midst of all of that --this kid was kicking, shaking,

his teeth chattering, arching his back in pain--I started to pass out

again(this doesnt only happen at hospitals, I swear!!it just happens

we are there a lot!) and then they were trying to take brennan from

me, which made him scream more, and take care of me and the whole

thing was just terrible. Finally I got better and we realized so much

had happened no one had checked Brennans temp (they usually check

every 15 mins) and lo and behold, it was 101. So that was probably why

his everything hurt and they think he had some reaction to the

benedryl with the " night terror " type thing so by the time the doc got

there, things were under control and he said to restart his infusion

and go ahead and finish it(we had stopped it in the craziness in case

it WAS a reaction to the IVIG itself) so they did and we all started

to relax and the nurses left and there we sat, Brennan eating some

fries and savannah had finally stopped crying, and brennan said

, " uhoh " and I looked and his hand with the IV was spurting blood, all

over the place, all over me, all over him and he started to panic

again. So I screamed for the nurse, bc I had no idea where it was

coming from, and they came running back in and unwrapped his hand and

the line had come out. and we were all like, you know what? its time

for IVIG to be done now. We arent going to re-poke him for the last

less than 1/4 of gammagaurd and it was all just too much.

So--I may have to add a 3RD kid to that mess? It makes my stomach sick

to even think of it.

AND--since my hospital chart says " sudden onset seizure " on it now,

until we can prove it wasnt a seizure disorder, I am not allowed to

drive for SIX MONTHS!! six months!! holy cow!!!with all the appts

needed for 4 sick kids plus OT for two of them, all the specialists we

see.......this means I have to try to find someone else to take us.

Which is only my DH and my mom and my DH has already missed two solid

weeks of work for this purpose(so long, Christmas:(

I know he is protected under FMLA as far as the kids and I go, but

even under FMLA, there is no money coming in.

And this post got way longer than I intended it too, so sorry, but

wow, sometimes things are just so overwhelming.

valarie