Surgery today

She had another CT today.

It showed some improvement in the ventricles, but not as much as the first few days.

Her regular neurosurgeon is back today.

There is some fluid outside of her brain.  It is bloody fluid from her brain pulling away from her skull.  He thinks this is stopping the ventricles from being able to get any larger.  So he is going to put 2 drains in to drain the bloody fluid (bilateral subdural drains).  The subdural drains will be two tubes (one on each side of her head) that drain into bags outside of her body.  There is the possibility that this won't work.  The neurosurgeon said the space could be filled in with webs or be more solid instead of fluid, that would require more extensive surgery.  But he hopes (and thinks) that it is fluid.

I told you in a previous post that my hand drawn pictures were not very accurate (because I must have been in shock when I was shown them), so here are my more accurate ones.  (I gave her too much brain matter before).

She is scheduled to go in to surgery at 3 or 4.  I am nervous, but hopeful that this will work.

The Dr. said that he guesses it will take a week for the bloody fluid to drain.

Mostly good night

She just doesn't sleep the whole night while she is here...because people keep bugging her.  But she slept most of the night.

Before school got out, they thought that she was using one of her vocalizations (her fake hiccups) to mean that she needed attention in the bathroom department.  I think they were right.  Good job school!

So last night at 3:00 when she was awake she did her fake hiccups I had the nurse cath her.

I guess I need to clarify my stance on being so stubborn about not cathing during the night.  This is only her 2nd UTI in several years.  Yes they were only a few week apart.  But I feel like we are still trying to figure out the best cathing system for her (and deep down I am hoping wither with the brain reinflation or the the lowering the baclofen pump that she will start going on her own again).

We were only cathing 3 times a day, and that was not enough (since she got another UTI) so OK...let's increase the number.

So I think my new idea is....cath her 5 times a day with no cathing at night (unless she asks for it).

If she gets another UTI...then yes, I think the next step would be that we have to cath her at night.  I just don't think we are there yet.

Her urine output has been within the limits that urology wants...they said they wanted 300-500 or less.  As an example...yesterday she had out...125 (cath), 388 ( herself), 400 (cath), 150 (cath), 200 (cath), 100(cath).  So the numbers look good.

A different urology resident came by (not the one that I have been clashing with) and he said it sounded fine.  But yes, if she has another UTI we would need to do something about the night.

One of my friends that has a child with disabilities mentioned that we might not get up and go to the bathroom during the night, but we are also not getting fed tube feeds during the night.  Crap, I honestly hadn't thought of that.  She is on continuous feeds for 23 hours a day.  I will have to see how I would feel about going back to daytime feeds only.  We switched for her hypoglycemia.  I might be willing to try it.  But would have to monitor her blood sugar for a while to see if she could tolerate it.  Typically everyone's blood sugar goes up in the morning anyway, so she might be OK.  I don't know.

Continued improvement

The CT yesterday showed continued improvement.  The neurosurgeon on call for the weekend said it may take a month for the ventricles to reinflate...I hope not...that is a long time.

She did not sleep well last night...she was not unhappy or anything, just awake alot.

She had a good day today.  She got a bed bath and was happy and awake.

They really don't want her going 12 hours without cathing...but I really don't want to wake her up.  So far they are doing it my way.  I know that it is not ideal.  I am thinking of saying if she wakes up on her own, then you can cath her.  That seems fine while we are in the hospital...but does not solve the problem while we are at home.  I hope injecting the antibiotics into her bladder at night will help.

I also googled it and saw that some people inject a saline mixed with a liquid neosporin into their bladder at night.  This sounds promising.  You don't run the risk of antibiotic resistance, but it still kills the bad bacteria in the bladder.  I will have to talk to Dr. Murphy about it.

CT

I was not here when neurosurgery came by with the results of the CT.

This is what the nurse said...

One side (1 ventricle) is filling up more than the other.  The ventricles are about 1/2 full (I don't know if that is the better or worse side).

Neurosurgery wants to continue raising her EVD (drain) 2 cm per day.  They will do another CT on Monday.

I will need to talk to nuerosurgery about the results in more detail.

Ellie is not a 60 year old man

The urology resident (I still haven't seen a Dr.) came by again this morning.  She says yes, they want us to cath her 5-6 times per day and they want the longest amount of time (even during the night) that she goes without cathing to be 4-6 hours.  

I said that is unreasonable.  That means I have to get up every 4-6 hours to cath her.  Plus it wakes Ellie up and she gets her days and night mixed up easily anyway.  I said that I go all night without going to the bathroom and most people do.

The resident said a lot of her patients at the VA hospital do get up every 4-6 hours to go to the bathroom.

I said "She is not a 60 year old man".

She said she has people set alarms to get up and cath themselves through the night.

I said that's not going to happen.

She gave me a lecture on how I was increasing her risk of infection, blah, blah and basically saying I was a bad Mom for not being willing to do this (no, she did not say this verbally).

No, I am NOT A BAD MOM!  I am a really really good Mom that is doing the best she can and it is too bad that this resident can't see this.  I am just realistic and trying to be honest with you.  I have to do what is best for Ellie and for myself.  If I don't take of myself then I am doing a disservice to Ellie and the rest of my family.

So she said that maybe we could leave a cathedar in draining all night and this might be a compromise they would be willing to make.  But it is really increasing the risk of infection.

I talked with Dr. Murphy about all of this when she came by and she said that we did not want to leave a cathedar in all night, it really really raises your risk of infection.  I talked with her about doing a bladder wash, or injecting an antibiotic into the bladder overnight.  She said she would write for it.  I said I will just let urology make their recommendations during this hospital stay and then I would call her to have her write for it.

Her arms are getting tighter so will be restarting botox injections.  And she (Dr. Murphy) wants us to get new arm splints.

We are headed down to the next CT at 11:00.

We will do another CT next Monday.

Hospitals...can't live with 'em...can't live without 'em (literally in our case)

Mom (and probably Ellie) are sick of being in the hospital.  I know it hasn't even been a week...but it is just so boring...and it feels like everything is out of my control.  I think I am going to leave for a few hours today because yesterday I broke down ad had a cry-fest with the nurse.

She did OK sleeping last night, I think she dropped her oxygen once.  We tried a new mask because she is getting a red spot from the old one.  But it was leaking like crazy and was terrible, so she only wore the other one for a few hours then I switched her back to her regular one.  They want to put padding (like moleskin) on the red spot before we put the mask on...it just doesn't help with Ellie.  

This morning we are going to do a bath, CT scan, and Dr. Murphy is going to come to lower her baclofen pump again (to see if this helps her pee on her own).

Urology says that the UTI is caused by the urine sitting in the bladder and growing yucky stuff, that's why they want us to cath her more often.  I asked about a nightly bladder wash or injecting an antibiotic into her bladder nightly to kill the yucky stuff.  They said there is no research supporting this and it is only used when every other avenue has been tried.  To me...it sounds like it accomplishes the same thing if not better...Get rid of the the yucky stuff sitting there.  I may just have to go a different route than urology and talk to Dr. Murphy about it.  I know Dr. Murphy oversees this process for one of our friends.

I do not know how we can accomplish cathing 5-6 times per day once school starts, unless there is a nurse in the school.  I'm trying not to worry about this right now, because I'm hoping that lowering the baclofen pump can get her going on her own again.

Then we just have to worry about her muscle tone getting tighter (with the lower baclofen pump dose).

I really don't even know how we can accomplish cathing 5-6 times per day at home.  She is only awake from 7 AM-7 PM.  And they really don't want her going 12 hours without being cathed (during the night).  (They want us to cath her in the night also...but I don't think I'm willing to at this point...maybe that will be after the next UTI).  She gets a sleeping pill to go to sleep and if we cath her after she is asleep it will probably wake her up and then how do we get her to go back to sleep...we have already used up the sleeping pill for the night.  So if we try to fit 5 cathings into 12 hours that is 7, 10, 1, 4, 7 (Every 3 hours).  It just seems like a lot to ask.  I will do it of course, but I'm just trying to adjust to this new schedule.  If we had to fit 6 times in...I guess we could do it 7, 9:30, 12, 2:30, 5, 7:30 (Every 2.5 hours).  It would bump her bedtime just a bit.

They want her output to be between 300 and 500 mL each time.

Increase

They want us to increase her cathing from 3-4 times per day to 5-6 times per day.

I will do it, but I'm grumbling inside.

Ellie did well today.

Another CT scan tomorrow (Fri).

Urology came by

The urology resident came by.

I asked my questions.

She said she had to go back and talk with the urologist.

She said she would be back later today.

She did say the septra she has been taking since the last UTI would not have prevented the last UTI she had or this one she has now.  I am baffled why they would prescribe this.  When she finishes up the antibiotics that is killing the current UTI they will put her on a different antibiotic to try and prevent a future UTI.

The resident didn't see any value in doing an ultrasound to see if the UTI got to her kidneys, she said her white blood count wasn't high enough to indicate that it had reached her kidneys.

I am hoping that the actual urologist comes by later today.

So mad

Urology didn't come by yesterday.  So I thought I was mad at them.  But I have redirected my frustration towards neurosurgery.

Come to find out this morning...Neurosurgery has not written orders for a consult.  The orders should have been written on Tues.  But no...none were ever written!

Neurosurgery is driving me batty. 

I am sure they are great at what they do...in the OR.  But they are not my favorite to have in charge during a hospital stay.

It would just be nice #1) if they would listen...If I want a urology consult...don't pretend like they're the urology expert and act like that is an unreasonable request #2) if they would pretend like they care...don't walk in the room and say "how is she doing"...I say "fine"...and then walk out of the room ...spend 30 seconds with your patient #3) call her Ellie, not Eleanor...so it at least appears like you know your patient #4) Do what you say you are going to do...like writing orders for a urology consult #5) follow-up...if urology didn't come by...follow up and see why

She slept a lot of the night

She slept a lot of the night, but was awake a few times.

I made a new consolidated schedule with the nurse because they were coming in WAAAAYYYYY too much during the night.  For example they were changing her feeding pump bag at midnight every night. And it wasn't even in conjuction with doing her vitals or anything. Come on people.  Sleep is important to healing and to sanity.

A few years ago there was an article in Readers Digest (Yes, I am that old) of a Father spending the night in the hospital with his son.  The Father got sick of people coming in during the night so he put a dresser in front of the door to block people.....tempting, very tempting.

So they were only supposed to come in at 10 and 2, but they still came in more than that.  I am going to have to get firm tonight.

She is awake and doing well this morning.  The enlarging of her ventricles does not seem to be affecting her negatively.  If anything she feels better, she was smiling yesterday.

They raised her EVD another 2 CM this morning and they will do another CT scan tomorrow (Fri) morning.

How to cover up a shaved head

We experimented with covering up her shaved spot...You can still see the betadine, but other than that it turned out!

She did really well today, she stayed awake for the whole day (even though she was awake the whole night last night) except for a few spots this afternoon.  So hopefully that means a night of good sleep for both of us.  Last night she kept me up with her chattering all night.

Improvement

CT scans show improvement.  The ventricles are starting to fill up with fluid and the brain is starting to move back into place.  The neurosurgery nurse practitioner said the ventricles are almost half full.  Wow, that is fast (in my opinion).  She is doing really well.  Yea!

Mixed up

YESTERDAY
Yesterday morning they raised the EVD (DRAIN) 2 cm instead of 1cm.  Then in the afternoon she was sleepy, needing oxygen and then we even had to put her bi-pap mask on for a few hours.  I was worried.  I supposed it could have been the UTI...but I didn't remember last time her getting sleepy with the UTI.  So then I got worried that it was the fluid in her brain.  So I asked them to call her neurosurgery Dr.  The resident came by.  I told him my concerns and asked if we could go back to 1 cm instead of 2.  He said yes.  So we did.  She also started having upper airway (which means nose/back of throat...not lungs) congestion.  We needed to suction her several times.  Respiratory therapy said her lungs sound good however, so that is the good news.  But has she caught a bug here in the hospital?  Will it get worse with her laying on her back for several weeks?

LAST NIGHT
She was awake ALL night.  Talking, happy, trying to get Mom to play with her.

THIS MORNING
I am no longer concerned about her sleepiness last night.  She just has her days and nights mixed up here in the hospital.  It is common in the hospital, plus it is common for people who have deafness and blindness.  If you are not getting visual and auditory clues from the outside world, it is hard to tell your days from your nights.  As a side note...she can see and hear, she just has severe loss in both areas.

PLAN FOR TODAY
Try to keep her awake to get her back on schedule.  Which will be difficult because we can't get her out of bed.  She needs to stay horizontal so that the drain works properly.

They will do a CT scan today to see how her ventricles are looking.

I asked about doing a nasal swab and blood-work for the nasal congestion.  The neurosurgery resident said we could do a nasal swab, but we know that the blood-work will be off because she has a UTI so he didn't see a point in doing that.  OK, that's valid, and I hadn't thought of it.

I double checked that they were going to consult with urology.  They said yes.  I would think that urology would want to do blood-work to look at her kidneys and an ultrasound of her kidneys.  I am also worried that the UTI antibiotic they started her on is an oral (g-tube) med and not an IV med.  So I really want to talk with them.  I left them a message yesterday and I'm sure they will call or stop by, but I am getting anxious.  I don't want the UTI to get into her kidneys if it hasn't already.

OVERALL
Overall I think that she is doing well.  I have seen her smile a few times today.  I really hope that the CT shows some positive progress.

One thing I forgot to share from yesterday is that Dr. Walker (the neurosurgeon following her this week) said that once they get the brain back into position he has never seen it collapse/pull away from the skull again.  That it sticks there.  He said he supposes it could happen, but he has never seen it.