Lots of smiles and giggles!

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

 

On the way home!

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

Love, Grandma Carol

 

New Formula - New Button

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

 

Saturday Update

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

 

Going to do more tests

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

 

Back in the Hospital.

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

 

Good News - Going Home - 1:00 p.m.

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

 

Tuesday morning update - Maybe home today

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

 

Sunday morning update from the hospital

Emma had another ileus (intestinal obstruction).  This was just too much air and gas in her stomach and her stomach muscles decided not to work and started backing everything up.  We saw the signs and wasn’t surprised when they told us that we were right.  They are now giving her pedialyte.  She is almost to her regular ML/HR.  They will run that for awhile and then they will start 1/2 pedialyte and 1/2 formula to see how she does at that.  Robin has been at home trying to get over a cold.  I talked to the doctors yesterday and questioned why or what can be done to prevent this.  The doctors said that because Emma is not mobile, her muscles and not active enough to keep the intestines moving and once gas/air starts building up, it causes an air blockage (ileus).  They said that because things are not moving through her system at a fast pace, there is probably a bacteria buildup in the stomach that causes the excess gas/air.  They will see what they will do for preventative measures once we get her back to normal.  We can tell she isn’t really feeling good as she likes to take lots of naps.  When she gets fussy, then we know it is time for tylenol and gas drops.  Then she settles back down again.  So we are just doing the waiting game.  I have John and Robin’s laptop here at the hospital with me.  Michelle is with me too today.  Robin and John both work today.  The good thing is that she isn’t running a temp.  I’ll update more when I know it.

Love to all, Grandma Carol

 

Emma’s back in the hospital

It is now 5 a.m. and Robin and Grandma Carol are heading to bed to get some sleep.  We took Emma to the ER and she was admitted.  She was starting with the same symptoms that she had while we were on vacation and we wanted to catch things before they got too far.  There was air blocking her intestines and so nothing was going through.  It was backing up into her gas bag.  Before we left the hospital, her gas bag emptied, so that was a good sign that things may be starting to work again.  More news to come later after we get some sleep and after we talk to the doctors tomorrow. 

Just an added note as to Emma’s appointments this week.  The genetics appointment got cancelled as they didn’t have the results of the tests back yet.  ENT was fine.  But, Emma does need glasses, so those have been ordered.

Have a safe and happy 4th of July.  Love, Grandma Carol