Update on Sasha Mar 8 OT

[Guest guest]

Hi Everyone.....here's an update on Sasha - sorry I didn't get to

posting this yesterday - it was just SUCH a wild and crazy day.

Well, it's been a busy few days. Finally we now are starting to put

the pieces of Sasha's puzzle together. According to her GI study

yesterday, Sasha is having trouble with her swallowing (part

discoordination and the other part tonsils being in the way). She

also has a normal structure to the MRI but the rest of the MRI is

still being reviewed (some other part that has to do with brain usage

and chemicals) and won't be ready for at least a week. The

neurogeneticist feels that some of what we're seeing is related to a

mild birth injury and that there's also some genetic underlying

issue....

They had to give her Versed before her procedure yesterday because

she was so agitated (which she has pretty much been agitated this

whole time - and not unusual for her) - and so they also feel that

she really needs, at this time, some form of medication to give her a

break right now. She will see the chief of psychopharmacology on the

11th and the 18th and the neurogeneticist will see her after those

appointments April 2nd or 4th (I forget now) along with me to get a

clearer history and profile of both of us. We are sad that it has to

be this way, but we really just want what is best for Sasha - no

matter what it takes.

PT came in and did an eval and is recommending an increase in her

home services to allow for some PT to help with her left sided issues.

As for now, we still have some work to do - but we have been able to

get the testing done that we needed to do - we got to see all the

different specialties and we are set up for follow up appointments

and they have also made Sasha's case as part of their coordinated

care caseload - which is proving to be so valuable (and such a weight

off my shoulders)

The anesthesiologist came in before we left and discussed all the

procedures that will occur on the 17th. She will have a

tonsillectomy, possible removal of adenoids if necessary, rigid and

flexible bronchoscopy (and they're going to flush her lungs or

something like that???), and an Endoscopy.

I think she was preparing us for the worst in terms of post surgery

(and hoping for the best). She told us about 5 times that she had a

feeling that Sasha might need intubation afterwards given her history

of airway issues - and, in that case, she'd be sent up to the PICU

until her airway was able to be stabilized. I'm a little nervous

about this, but the surgeons tell me that it's better to do it all at

once and get it done and over with instead of stressing her out for

numerous procedures.

She will definitely be admitted to MEEI in the a.m. (which is where

the surgery will be) and, depending on how well she does, she will

either stay there or be transferred to MGH post op.

As long as Sahsa doesn't get sick this week - this is the plan.

Also, Channel 4 news will be airing a story on the kids at 5 p.m. on

this upcoming Tuesday if any of you local friends are interested. (If

it's not on at that time, it might have been bumped to the next day

for a breaking news type story)....and the Lowell Sun will be doing a

story on Monday and putting it out this upcoming week as well.

All I have to say is I am SOOOOOOOOOO glad to be home!!!!!

PHEW....that was a LONG update!!!!

Thanks again for all your prayers and your positive thoughts! Please

continue to keep Sasha in your prayers!!!

Blessings

Stefani