Emma Kissock – Emma’s Syndrome

Emma has been eating, but they are limiting her to 3 ounces every 2 to 3 hours as she wants.  This way they are keeping the food down.  They are giving her solid food as well.  So hopefully, this will help too.

Emma has a pic line IV (which means it can stay in long term).  They put this in last Wednesday so that it was easier for the IVs and for taking blood for all the blood tests they were doing.  They can use this for the surgery or for taking blood or for antibiotics at home or whatever. 

They are in the process of scheduling the surgeries and the tests that Emma has to be put under for on the same day.  Looks like it might be December 10th.  This is not a final date yet, so we will let you all know then.

If you need anything, feel free to give me a call also.  If you are out of town, you can reach me at work on the 800 number 1-800-328-4393.

Thanks,

Grandma Carol

John asked me to send you an e-mail to let you know more on Emma.

Emma has been in the hospital since Thursday evening.  She has another urinary tract infection.  Saturday night Emma started not wanting to eat and if she ate more than a couple of ounces, it came back up.  There are times when she doesn’t want to eat at all.

Emma had a VCUG done today.  She has vesicoureteral reflux.  Link to information follows.

http://xpedio02.childrensmn.org/stellent/groups/public/@Manuals/@PFS/@Condill/documents/PolicyReferenceProcedure/018308.pdf

This reflux has 5 stages.  Emma has two different stages.  One side is a 4 and one is a 5 (serious).  They are recommending surgery to fix this.  Looks like the ureter tubes are too short.  Surgery will be in a couple of months.

When the radiologist was reading the test scans, he noticed that Emma’s left hip is dislocated.  It is not noticeable on exam, only on x-rays.  They went back to prior x-rays and it is there as well.  So, this could have been something she has had since birth.  This would explain why she crys when you move her a certain way.  They are now asking the orthopedic doctors to come and examine Emma.  This may not happen for a day or so.

At the moment they have Emma on a feeding tube to find out if she also has acid reflux. 

The doctor told Robin that Emma was not going to be going home until Emma was able to eat and keep things down.  So they are just waiting to see what all the test show.

Emma will have to be sedated for a bronchial test and ear test on December 3rd. 

So, for now, Emma is at Children’s Hospital in Minneapolis. 

I apologize in advance if I have gotten something wrong, as I am giving you this information as I have jotted down notes from John and Robin. 

Thanks for all your prayers and support.  I know all three of them need it.

If you need anything, feel free to give me a call also.  If you are out of town, you can reach me at work on the 800 number 1-800-328-4393.

Thanks,

Grandma Carol

They admitted Emma again last night (Thursday).  Emma had been running a temp of 103 that they were not able to bring down.  Robin had taken her to the doctor and the doctor said to take her directly to Children’s Hospital emergency room. 

Come to find out Emma has another urinary tract infection.  The temp is starting to come down but they were trying to get an IV started, but had no success after 4 tries.  The doctor said that as long as Emma was eating ok, she would be ok with giving Emma a shot of the antibiotic.  They are going to do this instead of trying again to start another IV.  Once all the lab tests come back, then they can decide what oral medication to send her home on.  It looks like it could be a couple of days before all the lab tests come back.

Michelle did not have school today, so she was scheduled to be with Robin last night through the weekend.  Last night I picked up Michelle and she spent the night with me.  We then took things for Robin and things for Michelle to the hospital this morning.  That way Michelle can be with Robin too.  We took plenty of things to keep them both occupied. 

Either Robin or I will update you more later when we find out more.

Carol