Molly's nightmare

[Guest guest]

Oh, Terri. How hard. We have had to tie Brennan down several times for

IVIG. BEFORE we are even ready to stick!! the emla works for both

kids, so I know it doesnt hurt that much,but its the thoughts, the

ideas, the things going on in their heads we cant stop, isnt it? I

wanted to cry the last time with Savannah--it was such a nightmare. I

wonder if your dr might prescribe something that might calm her just

for the time of SQ? Didnt Dayna say something about that----a med to

relax Charlie(or one of the kids) to help with infusion anxiety? If

this behaviour specialist doesnt help with Savannah, I may ask about

that myself. This CANNOT go on this way--my kid cant live like this.

Its making us all insane--- I leave infusion day feeling like I just

ran 50 miles only to find I had to swim another 100 to get home.

There, of course, is the point that their IgG troughs are so awesome,

I feel so happy they have this option to help them be

healthier-----but I find myself dreading it as much as the kids do.

then, there is the problem of what my role is. Am I part of the

nursing team? or am I mom? or someone in between? Naturally, I want to

control every thing going on, but my gut feeling is that for Savannah,

she needs me to be mom, not another nurse. Which is hard, because I

have to fight the urge to step in and say things, or want to do things.

The ID dr called me today,and after mulling it over, thinks we will

drop the pre-infusion blood draw for the kids, and only do it every

3-4 months or so. At first, we wanted to be sure the number was up and

staying up, but he says its been nearly the same since mid summer now,

so he feels this will be one less thing for Savannah to deal with.

Even though we only do it after the IV is in....its not like she is

getting a blood draw AND an IV in......still, its more fussing and

fooling around with the line once its in. He also feels the behaviour

specialist will be a good idea, and says she will even talk to me if I

need it----which I just might, during the infusion time.

Terri, he also brought up to me the dreaded " P " word. I dont like the

idea of ports, cant stand the thought of that in my kid, and the whole

idea of putting it in, getting infected, taking it out, putting in

another one.............and of course KRISTIN S now has me

terrified!!!Because our family is much like s---all the things

that ALMOST NEVER HAPPEN---invariably do for our family. He says this

may relieve some of Savannah's anxiety, knowing they wont have to keep

poking, or fishing around in there to hold her veins---but the whole

idea makes me want to throw up. I dont know about the whole thing.

OH--and just for more fun, the medicaid people just called me to tell

me that since the boys ssi went thru, now the girls will probably lose

theirs. there is no way we can pay for all the girls meds and

Savannahs infusions.........we do have a primary, but the medicaid was

covering everything that didnt. IT NEVER ENDS!!!

Valarie

[Guest guest]

My son is 4 1/2, autistic and nonverbal. He is medicated to fall

asleep. I have been waiting until he is asleep to stick him. He still

wakes up and is upset, but not nearly as much as if were awake and

watching me set up to insert the lines.

L

Molly's nightmare

Oh, Terri. How hard. We have had to tie Brennan down several times for

IVIG. BEFORE we are even ready to stick!! the emla works for both

kids, so I know it doesnt hurt that much,but its the thoughts, the

ideas, the things going on in their heads we cant stop, isnt it? I

wanted to cry the last time with Savannah--it was such a nightmare. I

wonder if your dr might prescribe something that might calm her just

for the time of SQ? Didnt Dayna say something about that----a med to

relax Charlie(or one of the kids) to help with infusion anxiety? If

this behaviour specialist doesnt help with Savannah, I may ask about

that myself. This CANNOT go on this way--my kid cant live like this.

Its making us all insane--- I leave infusion day feeling like I just

ran 50 miles only to find I had to swim another 100 to get home.

There, of course, is the point that their IgG troughs are so awesome,

I feel so happy they have this option to help them be

healthier-----but I find myself dreading it as much as the kids do.

then, there is the problem of what my role is. Am I part of the

nursing team? or am I mom? or someone in between? Naturally, I want to

control every thing going on, but my gut feeling is that for Savannah,

she needs me to be mom, not another nurse. Which is hard, because I

have to fight the urge to step in and say things, or want to do things.

The ID dr called me today,and after mulling it over, thinks we will

drop the pre-infusion blood draw for the kids, and only do it every

3-4 months or so. At first, we wanted to be sure the number was up and

staying up, but he says its been nearly the same since mid summer now,

so he feels this will be one less thing for Savannah to deal with.

Even though we only do it after the IV is in....its not like she is

getting a blood draw AND an IV in......still, its more fussing and

fooling around with the line once its in. He also feels the behaviour

specialist will be a good idea, and says she will even talk to me if I

need it----which I just might, during the infusion time.

Terri, he also brought up to me the dreaded " P " word. I dont like the

idea of ports, cant stand the thought of that in my kid, and the whole

idea of putting it in, getting infected, taking it out, putting in

another one.............and of course KRISTIN S now has me

terrified!!!Because our family is much like s---all the things

that ALMOST NEVER HAPPEN---invariably do for our family. He says this

may relieve some of Savannah's anxiety, knowing they wont have to keep

poking, or fishing around in there to hold her veins---but the whole

idea makes me want to throw up. I dont know about the whole thing.

OH--and just for more fun, the medicaid people just called me to tell

me that since the boys ssi went thru, now the girls will probably lose

theirs. there is no way we can pay for all the girls meds and

Savannahs infusions.........we do have a primary, but the medicaid was

covering everything that didnt. IT NEVER ENDS!!!

Valarie