Sodium

So apparently there is sodium in CSF which normally gets reabsorbed into the body.  Since they are tapping the CSF out of Morgan's body they need to give her a sodium supplement.  They have been giving this via the feeding tube but since we were able to remove that we had to put it in her bottle once a day.  It is like drinking salt and Morgan refuses to drink it...trying to find creative ways to get it down quickly :(

The Plan

Sat with the neonatologist and neurosurgery team today to discuss how to proceed with the shunt surgery & how to plan her move to adlib feedings & prepare for her to go home around this. They decided to test her protein level in the CSF again today (came back at 233 so still going down SLOWLY) and they will do again on Monday morning to ensure they are still going down (hoping near 200).  If so, then they are comfortable proceeding with the surgery.  We talked about if we need to push the surgery back and if this delays her going home- they were willing to entertain the idea of discharging her and me bringing her back to the hospital for daily taps if needed. I am not sure if this is the best idea (risk of infection, driving daily in the winter, etc.) but will think about it and I do not want them rushing the surgery if it is risky. 

We also talked about the procedure itself and how they fully remove the rickham reservoir to place a new shunt (I thought this stayed in and they attached the line to the existing reservoir but this is not the case).  They are determining if they should do a CT Scan or MRI tomorrow to get a better look also to prepare and I prefer MRI since less radiation.  I appreciated the fact that they were willing to sit down with me and collectively discuss our options and make decisions together.

Proceeding

Spoke to neurosurgery team and they are going to keep the surgery scheduled for next Monday.  They are comfortable proceeding because Morgan's CSF they are tapping is very clear (even though protein levels high).  He said often it is much darker from the blood clotting still present but this is not her case.   Protein level at a 100 isn't a magic number that hydrocephalus may resolve after or guarantee the shunt won't malfunction at that level but just sort of a rule of thumb I am told.

 I am still very uneasy about this because it seems like other than the shunt surgery Morgan is nearly ready to go home so on one hand would like to put this behind us and get her home but on the other I don't want to rush into it.

Protein Level

Protein level down to 247 today (from 270)- didn't decrease as much as they would have liked.  I have no idea what they will do about the surgery scheduled for next week.

Monday again

Ultrasound day again.  Morgan's ventricles looking better now because of increased tapping but they sent in CSF for protein levels as usual and came back high again at 270.  Frustrating and I think stumping everyone why fluctuating so much and going up (not down).  2 weeks until scheduled surgery and far from 100 level they are hoping for. My preference is not to rush the surgery if higher risk of course.

Dec 3rd

Well, surgery schedule to place shunt on Monday, December 3rd :(

scheduling

ugh...spoke with the neurosurgery team today and they are going to go ahead and schedule Morgan's shunt surgery for early December.  Reality starting to sink in...

I continue to research and look for success stories of Grade III/IV brain bleeds in preemies and children with shunts but quite honestly most are depressing.  There are many children that overcome delays of prematurity but few "normal" with this severe of a brain bleed and most of the stories I read of shunts talk about how often they malfunction. 

Shunt conversation

At this point I am not ready to come to terms with the fact that Morgan will likely need a shunt put in and how that will impact her life but the neurosurgery team basically said it is looking like it will be necessary.  I am bummed out that they are even talking about it and just keep hoping and praying it still resolves on its own.   Their plan starting today is to tap twice daily now to see if they can get the CSF to flush out faster and lower her protein levels.

Since Morgan's head fluctuates so much I think it is impacting her moods- maybe she has a headache or the pressure change causes sleepiness, etc. but often I think it impacts how her feedings go.  Today she wouldn't breastfeed at all and slept most of the day.  I try to feed her before they tap her because she seems to do better and not as agitated. 

Protein levels

Generally they would expect Morgan's protein levels in the CSF to be high at first and gradually decrease but this is not happening.  Over the past several weeks we continued with Monday ultrasounds and testing protein levels and so much fluctuation (up and down, bigger, smaller then bigger again) it is getting very frustrating and I don't think the neurosurgery team knows what is causing it.  Her levels were 200 then 219 now even higher at 270.  They are talking about possibly doing an MRI or CT Scan instead of ultrasound next week to see if they can get a better picture and ensure nothing wrong. 

At this point we are in the ICC unit of Children's and the last major obstacle for Morgan to go home (other than her hydrocephalus resolution) is just her feedings and getting her off of the feeding tube.  I think if we were to just let her drink out of a bottle she would be able to go home soon (less exhausting than breastfeeding to her little body) but we are purposely not rushing this because we don't want them to rush into the shunt surgery.  So...we sit tight, get her breastfeeding and continue to monitor her ventricle size and protein levels.  I must say I am extremely worn out and just trying to keep trucking along to get through this.