Emma Kissock – Emma’s Syndrome

Monday – On Monday the public health nurse came by to evaluate Emma for help through the county.  They are going to try to get a PCA to come in to give Robin a break for a few hours each week.  They are also going to see about getting extra therapy for Emma.  She was there about 1-1/2 hours.  She didn’t think there would be a problem with getting Robin some help.  Now Robin will have to see what agency she would like to come in and help or ones that would fit the Robin’s time frame and Emma’s conditions.  John, Robin, Emma and Grandma Carol took a short road trip to get everyone out of the house. 

Tuesday – This was a busy day for Robin.  Emma had physical therapy in the morning.  Michelle had a doctor appointment in the afternoon and they were able to take her cast off.  Then Michelle went to a girl friend’s house to work on a school science project.  Robin then stopped by the store to pick up smaller diapers for Emma.  With Emma only weighing 13 pounds, the larger diapers weren’t holding in everything.  Maybe we won’t go through so many outfits in a day! 

Wednesday – The home nurse was here today to check on the feeding tube and Emma.   Emma is not breaking down the formula.  They are going to try to vent Emma differently to see if that will help her stomach break down the formula better.  Emma is not gaining weight right now.  The nurse will be back next week and see how she is doing.   If things are not changing, they may have to change her formula.

Love Grandma Carol

Emma seems to be very tired lately.  She sleeps more than she is awake.  We have tried playing with her and holding her and she would rather just fall asleep.  Some nights are getting to be rough as she sleeps for about 45 minutes to an hour and then is awake for 15 minutes or so.  Tonight Robin just told me that Emma’s apnea monitor is now staring to go off.  So this could be another long night. 

Love Grandma Carol

I just talked to John and Emma and Robin slept all night last night.  The home nurse is there now.  Emma seems to be doing fine at home.  Robin and Emma surprised Michelle yesterday and went and picked Michelle up from school.  So Michelle and Emma were able to spend the evening together.  Now they can get back to a family routine.  Love to all, Grandma Carol

Robin and Emma are now off the hospital grounds and headed home!

Robin and Emma are just waiting for the final papers and the last couple of doctors to sign off, but they are ready to go home!  The blood tests came back negative for any virus.  Last night Emma was smiling and talking.  She was talking so loud that the nurses had to come in to see if that was Emma and if something was wrong.  They all wanted to see and hear Emma being happy and talking.  Daddy John came by the hospital last night and held Emma while Robin was packing and getting things ready to go home.  John took some of the things home last night so that Robin wouldn’t have so many things to deal with today.  I will let you know more when I hear exactly when they are leaving the hospital.  (Day 36 of this hospitalization and Day 125 since September.)

Love and God Bless! Grandma Carol

Emma is on day 34 of this admission – day 123 since September.  Last night Emma started with diarrhea and it goes all over the bed.  So they are now running tests to see if it is the c.dif. infection again.  They tried to get blood from her central line this morning and that was not working.  So we are waiting to see what the doctors are going to do next.  They did start Emma on an antibiotic just in case she has c.dif.  So we are now in another waiting game.

More updates coming later when we have results.  Thanks for keeping tabs on Emma through the blog.

Love and God Bless, Grandma Carol

Emma had a chest x-ray done this morning. I just got the news a little while ago that it was perfect — no fluid on the lungs! So we are not aspirating! The doctor said that Emma is doing great and that as long as she continues this way, they will be able to send her home in a day or two. They have been increasing her feeds. By tonight, they should be at a go home level. If she tolerates those, that will be a good sign that we can go home soon. Emma is napping at the moment so I am taking advantage of that and writing this update. I have gotten a few smiles and she has been talking some. She was very loud at one point that even the nurses had to come in to see if there was anything wrong or if she was just talking.
Love and God Bless!
Grandma Carol

They are shooting to send Emma home the early part of next week but she will be going home on caffeine this time around.

Robin

Just to let you know, they are starting to wean Emma off the oxygen to see how she does……..The GI doc was in and they are going to start upping her feeds per hour and then give her a few hour break — they are going to see if they can get her closer to a “going home” schedule so that we don’t run into issues when we would first get home or so that we don’t have to have continuous feeding going. 
 
The surgeon was in this morning as well and took the dressing off that was over her incision.  She’s napping at the moment, which is good because from what the night nurse said Emma didn’t sleep alot – she wasn’t fussy, but wasn’t sleeping either……or if she was sleeping, it was with one eye open so she didn’t miss anything.  Although at night I’m not sure what she would have missed!!
 
I haven’t seen the respiratory docs yet, but I have a few questions for them as well……they’re the ones who are really running the show here. 

Robin

This morning when the nurses were moving Emma in her bed, she didn’t cry when they moved her.  The doctors were in this morning and said that Emma is doing better.  They are still watching some of the blood tests.  Yesterday was a quiet day for Emma and it looks like today may be another quiet day.  The doctors have now said that it appears that Emma’s intestines are working ok and that they are not going to be doing surgery now.  So that is good news for all.  Love to all and God Bless.  Grandma Carol