Emma Kissock – Emma’s Syndrome

Just thought you might like to see Emma and her new glasses.  She isn’t used to them yet and will only leave them on for short periods at a time. 

Emma seems to have her moments.  Sometimes she is happy and then she turns to being fussy.  Last night she was fussy for 8 hours and then only slept for a couple hours and then was fussy trying to sleep and kept wanting her pacifier.  So Robin hasn’t been getting much sleep.  I was there for a few hours and let her get a couple of hours.  Hopefully we can get Emma through this so that everyone can get some sleep.  Of course, Emma was happy when it was time to go and see the doctor.

Love Grandma Carol

I just talked to Robin and she said that Emma has been smiling and giggling with John and Michelle and that the whole house is filled with laughter.  Emma seems to be tolerating the formula and only occassionally has to have the feeding stopped so her stomach can catch up.  Robin knows the signs now and is able to adjust accordingly.  It was great to hear that it is a happy household again.  Even Michelle commented that Emma was happy again and was enjoying playing with Emma.  Hopefully this is the beginning of many days of smiles and giggles.

Love to all, Grandma Carol

Just talked to Robin and they are on their way home.  Let’s hope for awhile. 

Love, Grandma Carol

The results of the barium study showed that the bowels were wrapping around the j-tube and causing everything to back up.  So on Sunday afternoon they replaced Emma’s G-J tube with only a G tube and a new Mikey button.  They have also changed her formula to one that is almost totally broken down.  Last night Emma was still fussy, but don’t know why.  The doctor had said that Emma wouldn’t go home until they knew she was tolerating the feeds and there weren’t any other problems.  Emma is feeding through the G-tube and also being vented through the G-tube to help release air.  I think this is another new thing for Emma and Emma is going to have to learn how to pass gas through the bowels.  So one step at a time.  So I’m not sure when they will be going home from the hospital.  Maybe today? – My guess is not as long as Emma is still fussy.  Maybe tomorrow?  I have given up guessing as Emma seems to do her own thing.  So we’ll wait for Emma to let us know when she is ready to go home.  I will update again when I know more.

Love, Grandma Carol

The test results from the barium GI test showed that Emma’s bowels are putting pressure on the intestines where she is being fed.  Her bowels and intestines are thus intermitently working.  So they are going to change to feeding through the stomach and not the intestines.  Hopefully this will fill the stomach first and help to keep the bowels and intestines working.  The will be changing her feeding button on Sunday.  The doctor said that it is like changing a pair of earrings and they can do that right in Emma’s bed.  I may not have this totally accurate as I did not talk to the doctors.  If there is something different, I will post another update.

Love, Grandma Carol

They are going to do a barium test to see how Emma’s stomach is emptying.  When John dropped Michelle off at the hospital, both Emma and Robin were sleeping.  The doctors said that this can happen with the Nissan (fundo).  So, we will see what they think or where we go from here. 

Love Grandma Carol

Well, they are admitting Emma again.  She has been fussy and crying and not sleeping for the last day and a half.  So Robin took Emma to the emergency room and I just got the word that they are going to admit her again.  They are trying to get an IV started which is a battle in itself.  Emma is going to the 6th floor (at least that’s what we’ve been told now.  Hopefully this will help Robin get some sleep too.  We are all getting frustrated and down and aren’t sure what to do next.  When I know more, I will let you know.

Love Grandma Carol

Robin just called that Emma has been discharged and they are leaving the hospital now.  This is day 5 of this hospital stay and day 139 since September 11, 2007.  Once Emma was started on formula, she started to be more alert and wanted to play.  Hopefully we won’t have to go through this too often. 

Love to all, Grandma Carol

Robin just talked to the doctor.  Emma has been on formula since midnight and seems to be doing better.  Once she was on the formula, she was awake and wanted to play.  Robin is now going to take a nap while Emma is sleeping.  Robin asked the doctor if there was any exercises, stimulation or medication that would help the intestines.  The doctor said no there was not.  He had discussed this with the GI doctor earlier and that was the concensus of the doctors.  But since Emma seems to be tolerating the formula, she may be able to go home later today. 

Love Grandma Carol