Emma Kissock – Emma’s Syndrome

Just a quick note to let you all know that we are all now back home in Minnesota.  Emma was released from the hospital early Friday morning and we were able to catch the evening flight out of New Jersey.  Although we sat on the plane for 3 hours before we were able to take off.  But Emma was such a happy girl that she didn’t care, she was just talking up a storm.  We had quite a few people comment on how good she was on the plane.  Most people didn’t even realize she was there because she was so quiet and good.  She didn’t cry at all.  We arrived back in MN around 12:30 am (Saturday).  John had left a vehicle at the airport for us so that he didn’t have to stay up to bring us back home.  We have quite a few appointments this week coming up, so hopefully we might be able to find out some answers.  Some of the appointments we have are with the Genetics doctor, her ENT and her eye doctor.  Will post more later.  Love to you all and thanks for all the prayers!!

Love, Robin

I wish that I could be home to help you celebrate your birthday, Daddy.  I love you and miss you lots.  Happy Birthday.

Love, Emma

Emma is on regular formula now.  She seems to be doing ok with it.  She is getting to be more like her regular self.  We actually fell asleep without the pacifier.  Everyone here is being great about trying to get us out of PA.  We are hopefully going to be able to leave the hospital around 9 a.m. and then drive the 3 hours to Newark to get the plane.  Then hopefully we can get on an early afternoon flight and be back home by dinner time.  If not, there is an evening flight out that gets us there late evening, but we will take that if that is all that is available.  We are working on getting everything packed and ready to fly!

Love to all, Grandma Carol and Robin

They have started Emma on the 1/2 and 1/2 mixture.  She seems to be tolerating it so far.  The doctor here is doing great trying to help us get home as soon as we can.  They are going to do the 1/2 and 1/2 for 4 hours and then go to straight formula.  Hopefully she will be able to go home tomorrow morning.   They are going to make sure Emma is the first one seen in the morning.  Robin is busy trying to finish up all the paperwork and make sure all the insurance companies are in line with coverage for Emma out here.  Emma is playing with her toys for a minute or so and then going back to sleep.  At least we are moving forward!  More to come as we find out.

Love Grandma Carol and Robin

Well, today they started feeding.  We are starting with Pedialyte.  They started at 5 ml/hr and are increasing by 5 ml every 4 hours until they get to 30 ml.  So, we are at 15 ml now.  If she tolerates the pedialyte, then they will start 1/2 formula, 1/2 pedialyte to see how that goes.  If that goes, then they will do just formula.  It is getting to be long days and long nights.  We are at the Ronald McDonald House.  Our timing early this afternoon was great.  We took a break to come back here and do some laundry.  As we came in the door, they were just delivering chicken.  So we had a free lunch for a change.  They do have breakfast items and other food items here for us to eat as well, but we aren’t here that much.  There is a nominal charge to stay, but it sure beats the cost of a hotel room.  Thanks to everyone for your support.

Love Grandma Carol and Robin

Before Michelle flew home on Sunday (oops, correction – it was Monday), Grandma took her to see Lady Liberty.  She rode the ferry to Liberty Island.  It was very educational for her as we did the audio tour.  (Thanks Michelle for catching Grandma’s mistake.)

Love, Grandma Carol

Emma made the trip here fine.  She was fussy at times, but made it ok.  Thursday and Friday were spent being fussy while Grandma helped get ready for the wedding.  The wedding on Saturday was beautiful.  When we were getting ready to leave the reception about 8:30 p.m., Emma’s feeding tube site was leaking.  So we went back to the hotel, Robin called the care team in MInnesota to see what they recommended we do.  The recommendation was to take her to a hospital in Pennsylvania.  The hospital was only 10 miles away, so that wasn’t a problem.  When we got to the hospital, Emma had a slight temperature.  About 15 minutes later, when Emma was going to be seen by the doctors, she spiked a temp of 105 and was having a hard time breathing.  We were immediately taken to the Trauma Section and had about 8 different people in and out (more in than out).  They put her on oxygen and gave her neb treatments to help the breathing.  They had a hard time getting an IV started.  So they put an IV into her knee.  They use this as a quick access so they could get fluid into her.  With all these other complications, she was sent by air ambulance to Danville, Pennsylvania where they have a children’s hospital.  So Robin and Grandma drove to Danville (about 90 miles away from the hotel).  They are suctioning her stomach for gas and fluids.  After a couple of hours of suction after she got here, the diameter of her stomach was 2 inches smaller.  They tried to take her off the suction yesterday, but her stomach just got bigger again.  They are thinking that there is a blockage in her intestines.  Probably just an ileus blockage where her intestines temporarily stop working.  She did have a dirty diaper this morning, so it appears things are starting to work again.  They are going to just vent the ng tube to see if that will help her stomach.  If that works, then they will start her feeding again.  So that is the next step.  We will be checking to see if insurance wants to air ambulance her back to Minnesota or want to leave her here.  At the moment, they will not discharge her to fly commercially.  Maybe in a few days if Emma tolerates her feeding.  We sent Michelle home with her Aunt.  Robin and Grandma stayed behind in Pennsylvania to attend to Emma and are staying at the Ronald McDonald House which is a couple of blocks away from the hospital.  More information will follow later.

Love Grandma Carol and Robin

Emma was fussy all day Saturday and parts of Sunday.  We didn’t know if it was her cold bothering her or gas.  Sunday evening, I put some baby oral gel on her gums and she settled down in a few minutes.  So I guess she is teething.  So at least we know what the problem is.  At least that is one that we can deal with easily on the trip.  Robin is taking Emma to different appointments early in the week so that everyone has given their ok for Emma to make the trip.  So far — we’re good to go and everyone is getting excited.  Everyone has a list of things to remember to take and the piles of things to go is growing.  So it won’t take long to put everything in the suitcase and then we will be ready to go.  Leaving on Thursday and will be back on Monday.  John has to work so he will be holding down the fort at home.  At least John won’t have to worry about coming home to take care of Emma.

Love Grandma Carol

Emma has been doing better this week.  Her cold has been staying out of her lungs.  She is on medication for that and also on neb treatments as well.  She has had several chiropractor appointments and that seems to be going along well.  They are doing one area of her neck at a time.  They started on a second part today.  Emma seems to be adjusting better each time and doesn’t complain as much with the subsequent adjustments.  She is still our fragile girl, so we still have to be cautious with her.  So far things are in place that Emma can have her first airplane trip.  Everyone is getting excited about that.  Robin did go to the doctor and she was given an antibiotic for her cough and cold symptoms.  So they are getting better each day.

Love Grandma Carol

The nurse came today and Emma has gained 9 ozs. in one week!  She now weights 14 lbs. 2 ozs.  So far Emma’s cold is staying out of her lungs, but as a precaution, they are putting her on medication.  Just want to make sure Emma stays healthy for the trip!  Robin is heading to the doctor this afternoon to see if she can get better before the trip also. 

Love Grandma Carol