back home

Morgan was discharged yesterday and we are back home again.  She is doing well and recovered quickly again with this surgery.  She is still very sensitive to loud sounds (coffee grinder, blender, etc.) and her balance not back to normal but she seems happier.  Back to sponge baths for a couple of weeks until her sutures come out. 

Shunt #2

Well it was a VERY long day keeping Morgan occupied without food or drinking for most of the day to prepare for her late afternoon surgery which was delayed until this evening.  We have been through several books, iphone/ipad games and walking up and down the hallway of the PICU unit with her sitting in the wagon the past couple of days (the temporary drain on wheels follows and Morgan smiles and waves to nurses like she is a princess in a parade :))! 

Finally went down for surgery about 6pm and took a couple of hours.  Surgery went well - they removed the temporary drain from the front left side of her head and placed the second programmable VP shunt on the back of her head on the left side to the lateral ventricles.  This drainage tube runs down her left side and she now has another incision just below her navel on the left side also.  Needless to say she has a pretty edgy hairdo right now...

Hoping for a quick recovery and this time will closely monitor her IV line to make sure it is not causing her pain! 

temporary drain

Morgan is doing great following last nights surgery.  The temporary drain they placed on the other side of her head is not a pleasant site to see (shaved her front left side of her head to place the drain and has only clear bandage over) and very difficult to manage with a toddler since it has to remain at the same level as her head at all times.  Every time she moves or wants to sit up, lay down, be held, etc. they have to adjust and re-level the drain bag.  Her scans better now and there is no infection in her current shunt line from testing the CSF so that is good. 

They determined that her shunt is functioning fine to drain the 4th ventricle but not the lateral ventricles now.  The only resolution at this point is to place a second shunt to her lateral ventricles again.  So separate from 4th ventricle shunt.  This is not the news we hoped to hear but we really have no other options they have given us.  They will monitor and schedule the surgery for Monday evening.   I wish they could do sooner since it will be very difficult to keep Morgan mostly in the same position in her hospital crib with the temporary drain. 

Not again...

Today was one of scariest days of our lives (second only to Morgan's birth day).  Started out as usual then a little after noon I received a phone call from our back up babysitter that Morgan woke up from her nap and was vomiting.  Heart drops - oh no...

I drop everything I am doing, cancel a couple of afternoon meetings I had scheduled, and head to pick her up.  I am hoping and praying that she just caught a stomach bug (which Pat had earlier this week so quite possible) but call the neurosurgeon and leave a message on the way just in case.  She was fine this morning.  When I see her she is looking very tired and like a very sick baby.  Spoke to neurosurgery a little while later and they advised us just to monitor her, likely it is just the stomach flu.  Pat came home to watch her while I ran to my doctor appointment (I am 18 weeks pregnant today) and picked up some food from the grocery store to make her some homemade chicken noodle soup for dinner. 

As I am making dinner and watching her sleep in Pat's arms a couple of hours later and we realize she is becoming more limp and suddenly she is unresponsive.  We can barely wake her and her eyes are rolled into the back of her head.  Pat and I begin to panic and head toward the car but debating whether we should call an ambulance instead.  She is breathing so we decide us driving will be faster and I sat in the back seat next to her on the way up to Children's making sure she continues to breathe.  Longest 30 min drive of my life! By the time we got to Children's emergency room she is completely limp and will not wake- I run her in as fast as possible holding her lifeless body.  The person at admission desk took one look at me & her and pressed a button on the wall- we are immediately surrounded by the trauma team.  I watched as about 6-8 nurses and doctors get her on a bed and start poking & hooking her up and finally she wakes up - thank god.  I have to say this is the first time I have completely lost it since she was born and could barely mutter her name and date of birth to the nurse through my tears.  I had to pull it together quickly and explain to them her situation to get the neurosurgeon over as fast as possible. 

She was brought down for CT scan and X rays which Pat had to take her into (I can't go in because I am pregnant) and I can hear her screaming "mama" through the door :(.  Her scans showed her first and second/lateral ventricles are enlarged again (not the 4th).  Her neurosurgeon is not available this evening and we had a different surgeon who explained she needs immediate surgery to relieve the pressure and they will put in a temporary (external) drain on the other side of her head until they determine the cause of the malfunction and next steps.  She was in surgery within an hour of us arriving to the hospital.