Keeping records...

This is the highlight of past week.

Posted in SMA forum, here for "record"purposes. Wouldnt post in baby's blog as this is not too happy. I've been wanting to make heads roll!
Posted on Tuesday night:
"I am beyond upset. Today it turns out that I was branded as a "mom in
denial" because apparently Albuterol is the Holy Grail and the non-
invasive way of dealing with SMA is wrong... the way we do it. Here is
the story:
Pulmonologist gave order for Xopenex & Robinul four weeks ago. Yipee.
Upon giving nebulizers with Xopenex for 3 minutes to Deedee, she
desats to the 50's. This happenned twice, in front of our old nurse,
so she saw that we were not making things up. We discarted the
nebulizer, did treatments each 4 hours for 5 days and Deedee did well
and got her bug off. Fine. This I had already posted here...

So, she gets her vaccines and flu shots, and ended up three days later
with fever and vomiting. So we went to ER, stayed overnight at PICU,
they found nothing of deep interest, BUT the RT, when she went to give
the night treatment, she was going to use Xopenex and we told her what
happenned. She said that then she would use Albuterol, to see if
Deedee did well with it. Three minutes later she had to turn it off as
Deedee's heart rate skyrockted, eyes sollen and she became cold and
pale. She said she would let the doctor make a note as it really seems
that Deedee has a bad reaction to Albuterol.


The week that followed we noticed that Deedee has been with distended
stomach, much constipation, too much gas... from almost no vents now
she needed constant venting and residuals checks... A new nurse
pointed out Rubinol gave gas, so I looked up the side effects and
seems they can be more than just that. Distended stomach,
constipation, dizziness, blurry vision... well, obviously the oh-so-
great benefits of the famed ani-drool somehow lost their luster. We
tested stopping it for a week. And so the problems with being bloaded
and distended like a balloon and with constipation were gone. Heart
rates became normal and baby seems happier. So... What did we learned?
No robinul is best. For us, drool is the same anyway. What's the point
of giving meds that actually works against your child?


So... Today had a cardiologist appointment (a waste of time as in
reality he didnt even did a EKG or check anything about Deedee...
didnt even knew what SMA is... Didnt even touch Deedee! I tell you,
not even 5 minutes after a 50 minutes wait) and also with the
pulmonologist to give Deedee a Synagis shot. I asked for a D/C for the
nurses orders on albuterol/xopenex and robinul, explained why... The
pulmonologist says she spoke with the doctor from Picu and he said
Deedee did fine, since the RT said nothing and put nothing in the
notes and she could not brand Deedee as allergic if she had not seen
any reaction at all. Then the new nurse buts in asking these questions
about oxigen use, about the way we attack desats, that Deedee is in
the 50's (She desated on Friday night because of a plug, a fast going
down and then fast going up to her normal 98, but she emphasized
Deedee stayed in the 50s which was not true). She was also complaining
I wanted to suction while it was her duty to use the ambu, and then
going on with her experience with SMA kids (tpes 2 and 3 and
trached,by the way), and that she felt uncomfortable with how we were
handling her. She went on with explaining we didnt want to use Xonopex/
Robinul, the doctor explained 5 times what a bronchodilator is since I
am stupid and I dont get what it does and the nurse emphasized I didnt
know what I was doing...


In the end I got a PRN for the Xopenex, less dosage, the pulmonologist
pissed at my attitude but giving me a referral to an allergist for
finding out about any allergies Deedee may have (which I had asked in
the first visit since I know I am very allergic to many things and
Deedee is very much like me)... We get home, the nurse keeps her talk
about how SMA kids should be handled, about the right way of handling
desats... you know, she is such and expert... When the shift changed
and the old nurse arrived, new nurse began pushing buttons the same
way she did with the pulmonologist. She started her drilling on the
what ifs, what would we do it Deedee needs a bronchodilator, what
woudl we do... if anything. To make a long story short, I finally
screamed at her and after whining to my husband about this kid "not
gonna become the first one she looses", followed on me being in
"denial" when in the end for the child safety she should be trached...
and then she goes. I made her feel so uncomfortable after all, doing
all these things and procedures that we came up with! Um-hum... The
old nurse told us that in the morning, the new one had called the
agency saying she would not be back in the case (seems that at the
moment we were in the pulmonologist office). So... End of story about
the new nurse that only lasted for 1 week... Still, it does nothing to
make me feel better...


My main upsetting/ pissing off factor is simple: Why is it no one
believes it when you say your child reacts to something? Even with
witnesses! Why it is wrong to follow Non-Invasive when Deedee's lungs
are clear, her stats are 97-100, heart rate is normal ( and we keep a
hourly log for both just in case, to show the doctors). If she doesnt
NEED a medication why should she have it. Even more, if she REACTS to
a medication, why should she have it even as a PRN?!!!!! I have a
manual that seems is made of thin air as nurses dont believe in it. I
have copies of the consensus, of all of Swoboda pages, of any
information RELEVANT to SMA Type 1, and repeat to them Type 2-3-4 is
NOT Type 1! Just because Deedee seems fine doesnt mean she is not
frail. Then we get the stories of rehab and therapy and how it all
worked... Do they get that Deedee's genetic disorder actually
progresses with time and that we must work to actually keep what she
has? It is all a constant fight, a constant questioning of everything
we do... Which is everything you all do... And it is all so
exhausting, unnerving, tiresome, frustrating and angering!!!! Even
more when so-called proffessionals do the oppossite of helping!


We will try getting a hold on DrBach and Lou tomorrow during the day,
to see if they can shed some light upon us if we are so wrong, or upon
them if they dont want to hear us because we dont have medical
degrees. I want to reach DrSchroth to get her opinion and actually get
an appointment (working on that), as I see that with this
pulmonologist we aint really heading anywhere as she follows "standard
rules" for these patients... You know, what I brand as "mass
syndrome". Why things have to be so difficult? Aint them
difficult enough?"

At least the night proved that I'm not alone in this psycho-world, and that exactly is something that SMA parents go through with professionals over and over and over...

The outcome:

Wednesday: We tried to get DrBach in the morning, good timing. He asked why give meds when baby's lungs are fine. Amen. He gave a discontinue to them. In the afternoon nursing company called, as PsychoNurse had stirred the beehive over there, but their tone settled when we simple said "talk to DrBach, his order is discontinue the meds and no O2 unless she's having a respiratory arrest". End of story. Suddenly we are back to being the parents who "care so much and know so much". Um-hm... That's as long as there is a medical order backing us up. Well, apparently everyone thought we just wrote Deedee's care handbook out of divine inspiration... What is there are the facts of what to do for her. We didnt invent it (even if we do have very creative imagination). Everything we do has been following the NIV suggested by DrBach and his books and followed by hundreds of parents that belong to FSMA and believe in the NIV as it does allow for better quality of life on such critical kids (Im talking about SMA Type1 especifically... People get biased by revious experiences with types 2 and 3 especially nurses that think that SMA is the same in all...).

Thursday: Still no afternoon nurse available, but at least the company is working with us again, and communicated with DrBach, and Neverland is happy again. After giving us almost a big heart attack. I was really bad for like 4 days in a row, with a pain in my chest because of the high stress... Felt just as helpless as when we were in our hometown's hospital... I'm very grateful for the SMA forum. Their insight is definitively what keeps us going.

Friday & Saturday: Back to daily routine, I guess... New nurse on Saturday was ok, both were like having Mary Poppins at work.

Me, I have a project semi-final for Sunday night (now) and class ends next Saturday so it is all high intensive work. Plus I must load the prospective boss website so there's something besides the construction warning and I actually get paid.

Will keep venting...

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