Really?!?!?

So yes, it looks like Ellie has another UTI.  I have only seen the results that the nurse pulled up.  I have not spoken to nuerosurgery (the Dr.'s following her right now) about it yet.  I did place a call to her urologist.

I am so frustrated by this.  I have been extra extra careful about being really clean while cathing her, plus she is on a low dose antibiotic (Septra) to prevent a recurring UTI.  We are back to Mom blaming herself...typical Mom of a child with disabilities.  I guess that's the good news...I'm a normal Mom right?

I feel overwhelmed by this right now.  Doesn't she have enough going on?

Today she has also needed oxygen while awake.  This is not normal for her.  I am disheartened by this.  Maybe they are going up too fast on the EVD (External Ventricular Drain)

I spoke with Dr. Walker and asked him some questions this morning...

Can hydrocephalus get worse with puberty?
No.  Hydrocephalus can cause early puberty, but hydrocephalus does not change with puberty.

Could the CSF (Cerebral Spinal Fluid) have gotten infected when her spine surgery got infected and do we need to check her CSF now?
It could have, but it didn't.  If the CSF got infected it would have gotten to the baclofen pump and she would be REALLY REALLY sick.  There is no need to check it .

Can we send a urine sample due to decreased urine output over the last 3 days?
Yes...at this point in the day we have sent the sample and gotten the results back for the UA (Urinalysis).  The results for the culture will not be back for 24-48 hours.  The UA showed increased white blood cells, red blood cells and bacteria.

How much success have you seen with this procedure (raising an EVD to fill the ventricles back up with fluid and push the brain back in to position)?
He is optomistic.  They have done it before.  Just not on this severe of a case.  Dr. Brockmeyer had said that it might take a week or two.  Dr Walker said it might take several weeks.  "Several weeks" sounds longer than a "week or two."

END OF QUESTIONS

Dr Brockmeyer had told his residents that he wanted to do a repeat CT scan on Thurs or Fri.  Dr. Walker wants to do one Wed and Fri.  I like that better.  Dr. Brockmeyer had shown me the CT scans but either he didn't explain it well, or I was in shock and didn't absorb the information well.  Because Dr. Walker showed me again today and I was in shock again.  I will try to draw another picture because I don't think I drew it accurately last time.

Dr. Brockmeyers plan was to raise the EVD 1 cm per day.  Dr. Walker wants to do 2 CM per day.

So today we raised the EVD 2 cm and she is draining a lot more than she did yesterday.  This is kind of opposite than what should happen.  As you raise the EVD it should be harder to drain and should drain less.  The Nuerosurgery Nurse Practicioner thinks as we raise it higher it will start to drain less.

Dr. Walker confirmed that the shunt malfunctioned.  The shunt severely overdrained.  The shunt will need to be replaced.

Also, I was wondering when the CT scans were and they were on 5/4/12.  So a year and 2.5 months-ish.

I was looking over her blog and it looks like I started feeling like something was "off" starting in about April or May.  So I am assuming that is when the overdrainage started happening.  If it happened before that it could have affected other changes that we have made over the last year and 2 months.  Such as raising seizure meds, etc...  And maybe some of the changes we made didn't really need to be made.

First we have to make it through this over-drainage issue and surrounding surgeries.  Then we can look at what changes have been made and did they really need to be made.

Hard day for Mom.  But Ellie is doing OK.