Another bad hospital experience-but home

[Guest guest]

Hi everyone,

I saw both my two oldest children posted to let you know I was starting

to recover some (Didn't you just LOVE Luke's funny method of communication!

he loves to be original:)) They told you I was recovering slower than

expected but didn't explain why. So.....

We thought the operation was well planned out and even had 1 1/2 hours

with a great anesthesiologist who knew about Mito and what to avoid, etc.

He wasn't the one performing the anesthesia unfortunately and sadly even

though he wrote in CAPITOL letters not to used either versed or lactate

ringers, and even spoke directly to the one he was told would be in the

operating room with me, everything was done opposite his wishes! Another

man performed the procedure and claims he had no access to my files or

anything stating that he was not to use these. I was also told to do the

local spinal anesthesia so I would avoid all of the sedatives and the slower

recovery and all those meds cause only to be drugged up anyway. We think

the man who performed the spinal was being trained from the little I

remember hearing it being done and then I was in and out during the

procedure quite a bit. I remember wobbling tons while being awake and

wondering if my legs were elevated in stirrups which I later found out they

were. I was also told later that I moved around so much at one point that

they had to put me much more heavily under. If I wouldn't have been given

any sedatives as planned I would have been in my right mind to sit still,

you know! ANYWAY... the end result was several issues. I had to remain in

recoverey much longer as every time I started to drift off I would stop

breathing and I was so groggy and not waking up that they kept me longer.

This is where I also found out lactate ringers were being used as I happened

to overhear the nurse speaking to someone on the phone about it. After that

there was a major scuffle back and forth over the phone as to what to do as

they have do exactly opposite what should have been done! End

result...ANOTHER complication! My left side never fully has " woken " from

anesthesia. The entire left side is involved and even my eye isn't quite

right. As you go down the left side the numbness gets worse and the

weakness also. By the time you reach my knee I am totally weak and numb.

It feels like cold plastic to the touch. For the first several days my knee

buckled constantly and an MRI was performed on my back because the

neurologists pinpointed the worst point as being at the 3rd and 4th Lombard

(the area where the spinal was placed. I have abnormal reflexes just above

the knee as well as the worst of the numbness at the knee. Anyway, they

were looking for a blood clot or anything to explain the numbness/weakness.

All they found according to the radiologist is a slipped disk in the area

(which I have had for many years and NEVER has caused numbness or etc). I

have spoken to therapist, nurses, doctors, and even a physiatrist who have

all stated the most likely cause is the spinal, but I think the hospital is

trying to blame the disk problem so they aren't liable since so much was

screwed up. I was sent home with a walker and told to seek PT and nurses

care if possible. I am getting stronger each day so I am hoping that it

will all return, but the numbness is still the same at this point. When my

family rubs my left side anywhere, it feels really weird. My back, side,

arm, and especially my leg are totally different feeling. Cold things are

like ice touching me and heated things are dull and lukewarm. This has been

very frustrating to deal with on top of the MAJOR repair work they said they

performed. They said they did more than the usual repair work as many of my

inner muscles were torn from my 7 births. I said, " Thanks! " I am quite

swollen but expected this part at least. I am just glad to be home and

trying to recover here.

Thanks to everyone for their responses to my kids and I am still

praying for those who are struggling.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomia,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency...

Luke (16)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4),

Marquis (3) prenatal drug & alcohol exposure with likely FAS, behavioral

issues, SID...

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, possible arachnoid cyst,