Day 108

We brought our baby girl home from Children's hospital today for the first time after 108 long days!  We were given all of the discharge instructions and follow up appointment to remove her sutures from the surgery.  Just have to keep them dry for a couple of weeks- sponge baths only and keep them clean and clear of infection. Morgan looks great and eating much better I think - probably because her head isn't fluctuating daily and getting upset from the tapping.   Also provided with contacts for ongoing Physical and Occupational therapy through the school district (she has been receiving this in the hospital for several weeks now).

Recovery

Morgan was a bit fussy overnight and needed warm blankets since her temp kept dropping but other than that did very well after the surgery and did not need anymore medication.  She went down for a CT scan and X ray which we were told look good except there is some air in her ventricles/CSF which is normal from being open during surgery but it might make her fussy until released.  She also was coughing very badly all day but they said this happens sometimes from being intubated during surgery. 

Overall she is looking good and eating well today so hopefully just a couple of days before she is discharged.

Shunt Day

The day we dreaded has arrived.  Shunt surgery day.  Now that we have been through the whole surgery thing once we know a little more about what to expect and a busy more to prep.  As promised, they tapped her and sent down CSF for protein level testing early this morning - they came back at 213 so everyone agreed to proceed and was comfortable with.  Went over the procedure and last min details and signed the consent form with the neurosurgery team also this morning.  They will pltry to place the shunt in nearly the same place the reservoir was (front right side of head) and she will have a small incision behind the right ear and just below her belly button also where they will feed the tube down and coil in her stomach.  The Ventriculoperitoneal (VP) Shunt they were putting in was self regulating OSV Valve. 

There was a minor hiccup this morning with Morgan's blood tests which almost delayed surgery- her clotting factor level was low so they wanted to retest to make sure.  At this point I was just ready to have it done and over so was a bit annoying but the 2nd test came back ok.  Of course this was after the lab tech poked her a few times and finally called in the nurse practitioner in order to draw some blood- I HATE watching this and Morgan is crying and so uncomfortable.  Next they put her IV in- thankfully this time they got an experienced nurse to put in the first time since they always have issues.  Then cleansing bath- rub her whole body down with these wipes.  Spoke to the anesthesiologist again about the process and said the surgery would take about 1/2 hour but whole thing is about 1 1/2 to 2 hours. 

We ended up waiting over 2 hours while Morgan was in surgery and were starting to get quite nervous but then the surgeon came out and said it went "very well" again- whew. They were able to extubate her right away before they brought her back up to the NICU also which was great- she looked pretty good right after and I was able to hold her this evening also!  I slept much better than I have in a long time- a relief it is over, now lets have her recover quickly and get out of here!