Feeling Better

We have been monitoring Morgan all week, skipped school to stay with Grandma on Thurs and still some afternoon lethargy and headaches for couple of days but resolved by lying down for a little bit.  The last two days she has seemed much better and hoping her body has now adjusted to the new shunt setting!  A follow up appointment for MRI and neurosurgery set up for Aug 30th. 

thankful for play doh

Not exactly where we want to be spending our morning (in Children's Hospital St Paul) on July 4th!  Morgan woke up feeling fine and acting like her usual self (I didn't really expect different since mornings are usually fine)- we ordered breakfast after they gave her clearance to eat and ate breakfast in bed while watching Queen Elsa.  We were told the neurosurgery team would be rounding at 8am to check on her and if she was feeling OK, send her home.  Of course this ends up being about 11am after asking a few times.  Morgan is feeling great and restless- watched a movie, read books, played with a few toys but she wants to go home (so does mom!)....along to save the day is Children's volunteer with a tray of play doh- kept her busy for at least an hour! 

Finally neurosurgery comes in and agrees that she looks good and discharged to monitor her.  They said give her about five more days (as long as she isn't extremely sick or not eating, etc) and watch her and schedule a follow up appointment in about 4 weeks if she seems to get better. 

Overnight Hospital visit

3 days after change in shunt setting...we are having a great summer day swimming in my brother & sister in laws swimming pool, grilling dinner, etc. and suddenly Morgan wants to lay down- I could tell she was getting a headache again.  She was laying on the floor in their living room for a few minutes and suddenly starts crying and vomiting :(.  Quickly packed up our things and headed to the hospital!

We went to St Paul Children's ER for the first time (instructed by neurosurgeon when we called on the way)- thankful for a quiet night there and fast service.  She seemed to be fine by the time we got to the hospital but after several days of her with bad headaches, lethargy and now vomiting we thought best to get her checked.  She went in for limited brain MRI again - what an amazing staff there that had her laughing and watching Frozen during the MRI!  The ER doctor came in and reported the scans were still concerning and Dr Petronio was on his way in.  When he arrived he had reviewed the MRI and said actually that they looked better- her lateral ventricle size increasing which is what he wanted to see.  He was also confused and concerned about her symptoms but said sometimes it takes patients a week or so to adjust to the new changes.  When I asked if it was normal to have these afternoon spells he sort of laughed and said "nothing is normal with hydrocephalus/shunts"...hmmmm, well that's comforting but so true.

We talked for a while about what to do but in the end he suggested leaving the setting as is and just watching a few more days- hated to reset again before we give her body a chance to adjust. He did advise we stay the night at the hospital for monitoring so we transferred up to a room and got settled about 11pm, hoping all goes well and we can get out of here tomorrow morning early!  Morgan was not wanting to sleep in the scary hospital crib by herself so ended up brining in a bed about midnight and I curled up in there with her :)

120 not agreeing with Morgan

A couple of days after her shunt setting changed to 120 and Morgan is making us a bit nervous...both afternoons she has gotten very glossy eyed, tired and grabs her head and cries saying she has a headache.  Good news is that after she lays down for a bit she seems to feel better.  This is the first time she has been able to tell us what is wrong so at least the guessing game is over and we know she is having headaches!

 

This seems a bit odd and backward to me- they said it might take her a couple of days to adjust to the new settings but seems like this wouldn't happen in the afternoon (when over drainage occurs)???  I felt like she would have a harder time adjusting after she was lying down for a while (when the amount of fluid increases in her head more than she has been used to lately)...I give up trying to figure out symptoms of hydrocephalus!