The Bad, the ugly and The…uglier?

Today’s visits to milwaukee…*sigh*

The Bad part is that Immuno took so long that we ended up missing our GI appointment (our doctor had to be at an offsite meeting – they couldn’t work us in at all today after we were so late).

The ugly – She got taken off food again. Back to just her elemental formula and the rice crackers she adores from Wal-Mart. At least she gets to keep those! the reasoning behind this is that while the fellow (who I talked to last week and who told me that since she wasn’t anaphylactic that she could start on food again) wasn’t concerned about any other reactions than the ones requiring stabbing her with an epi-pen, the head doc, who we actually talked a long time with today, was pretty convinced that what I have been thinking was a “cold” for two weeks is actually kendall’s reaction to pears. Yes. Pears. Baby food, stage 1 mashed up watered down pears. they searched EVERYWHERE for ANY kind of infection as the cause of all her respiratory issues, and found none. So either she has some superinfection that is hiding well, a very slow moving virus, or its allergies. Dr. R said he wasn’t into taking chances so no more food.

he makes a good point though, with the fact that it COULD be allergy related, as well as the fact that it IS only three weeks till we meet with the nutrionist at his office to go over what foods should be safe and how we can introduce them. i hope she has a good plan!

The second part of our appointment was focused on the immunological component of kendall’s bloodwork, which showed that while her body has a normal amount of the building blocks of immunities, it isn’t actually using them. (And if this sounds like a broken record of the post from last week about her HAVING growth hormone, just not being able to use them, you’re right! DING DING DING!!!!) Frustrating.

So after a LOT of discussion with the doc, and i stood my ground on the whole vax thing and how it has ALWAYS only led to a couple days or weeks of horrible stomach shutdown followed by an inevitable inpatient stay, we came up with this plan:

She did get one vaccine today. ONE. Single, not combo, shot of the HiB vaccine. this vaccine protects against certain strains of pneumonia and pneumonia=like flu illnesses. If we had to pick one to give her, this one would be a good one for her body to start learning to react to in the appropriate manner!

IF her body is able to fight this one off,  we will be taking more bloodwork in 5 weeks when we are back in clinic to see what her response is at that time. Her current number is ZERO. As in zero response to this illness in her system based on previous bloodwork. So anything above zero would be great. If it is still abnormally/shockingly low, but she is staying healthy, then we’ll RE-vaccinate, and re-draw the bloodwork. If, at that time, she is STILL low, then we’ll start IvIg therapy (I’ll explain that more in a little bit) in about 8-10 weeks.

IF she manages to stay out of the hospital, but gets sick with any kind of infection/viral illness, and still has low levels, we’ll look at starting IvIg therapy in 4-6 weeks.

And finally, if she follows her usual path, and gets sick enough from this vaccine that she ends up inpatient, we’ll probably start IvIg therapy right away.

Either way, its looking like IvIg therapy will be a part of our life in the near future.

And I am not sure how I feel about that yet. If it will be a large part of the help she needs, then great, awesome, get it quicker! But I think it will be…just another tough thing to deal with. I am trying to not think too much about it until we know more about the results. And in following with that, here’s a brief overview of what IvIg therapy is – which is where we’ll keep it till we know if Kendall needs it or not!

So that’s about it for today’s update. I am sure I’ll have more details tomorrow. for now i am totally and completely done with today! Kendall had to be held down for the shot, and then for having extra tissue burned off her Gtube site, and then once more for bloodwork. I think it was almost harder though, to hold myself back from slapping the mom who wanted me to feel sympathetic that it was SO MUCH HARDER for her to convince her 8 year old daughter to walk into the lab to get one poke, that it must be so easy to do it when they’re a baby. I just looked at her and said “it is NEVER easy to put your baby through what this baby has been through.” (and finishing that thought in my head was “but I can just about guaran-dang-tee that kendall will ALWAYS be stronger than most kids when it comes to handling this stuff, most especially your precious little bundle of fit-throwing joy there whining for all the things she NEEEEEEEEEEDDDDDSSS you to buy her if she agrees to get bloodwork drawn”.

(And yes, i know that i don’t know her story, i have no idea what that mom has endured or that little girl, and i know that many diseases can be invisible and still horrible. I am commenting more on the mom’s desire to turn it into a contest to be compared, who has it harder when taking their kid to the lab).

anyways.

we made it home, safe and sound, all babies tucked in their appropriate beds. sorry this is rambly. i’ll blog more coherently in the morning!

peace.

 

T