Emma Kissock – Emma’s Syndrome

They have stopped the feeds so that they can put in a “J” tube which will take the feeding past the stomach.  Emma has not been tolerating the feeds at an increased rate.  It will be later today when she gets it because they have to wait several hours for her stomach to clear out.
Love to all, Grandma Carol.

Sorry I haven’t updated for a couple of days.  I was busy with Christmas and making dinner for my sisters and their families on Sunday for 20 people.  Doesn’t seem like a lot of people, but with fitting in Emma time, Michelle time and Christmas, I wasn’t left with extra time.  John, Robin, Michelle, Uncle Russ and Auntie Angie stopped by on Christmas Day after their Christmas dinner.  Emma was just playing on my lap, but when Daddy came in and said hi, Emma was all smiles.  So she was just talking up a storm.  Friday they did an upper GI and an ultra sound on Emma’s spleen.  Emma’s speen was enlarged.  So with her blood tests out of wack, they figured out that what Emma has been fighting is Mono.  Saturday evening, they started Emma on pedialyte.  On Sunday they switched to formula and are increasing the rate every 5 to 6 hours.  I just talked to Robin and she said that so far it is going ok and that Emma finally slept for 5 hours during the night.  As she was up early this morning, she is now back down for a nap.  At least she is finally getting some of the rest she needs.  All the doctors say that we have to take things slow with Emma or she will revert back and then we will have to start over again.  So slow and easy is the plan. 
Love to all, Grandma Carol.

Emma is still in the hospital.  Emma decided to be awake so that she could see Santa.  Of course, Santa managed to come just before Emma woke up at 2 a.m.  Mommy, Daddy and Michelle will be coming later today after they celebrate Christmas with John’s family. 
Emma spiked a temperature on Tuesday.  They put in a central IV line so that they can do labs and IVs from the same port.  They found out that Emma has a bladder infection now.  She still isn’t tolerating her feeds and has lots of gas so gets bloated easily.  The test for C.Dif. came back negative now so the antibiotic has helped.  Emma had a big poop and is now happy, talking and playing.  So instead of sleeping we are playing.  I guess we will nap later when she does.  As you have probably guessed, I am at the hospital with Emma.  Once she can tolerate her feeds, she should be ready to go home.  Hopefully she will be feeling better soon. 
Peace to all.  Merry Christmas from the Kissock family and Grandma Carol.

Emma is still in the hospital.  According to the doctor this morning, she will be there for at least a couple more days.  The doctor said he would see Emma again on Tuesday (after his day off).  Emma is still not tolerating her feeding and continues to lose weight, so she is on a nutrition IV right now.   So, we don’t know if Emma will be home for Christmas or not.  We are just taking it one day at a time.  I will update more when I know more. 
Love to all, Grandma Carol.

Emma is still in the hospital.  On Monday night Emma wasn’t tolerating her feeds, so they put her on IV fluids until her stomach could catch up.  She is on pedialyte right now and still being fussy and not herself.  A lab test came back with Emma having the C-dif infection again.  This one is very contageous and affects the stomach and bowels.  So that explains why she isn’t tolerating her feeding right now.  Mommy has been splitting her time between Emma and Michelle as Michelle got the flu bug as well.  Hopefully both girls will be feeling better soon. 
Love to all, Grandma Carol

I apologize for not updating this sooner, but helping with both Michelle and Emma kept me busy.  Emma is still in the hospital and will probably be there at least another day.  She is still having problems with her breathing and just lays there and is not active.  Emma got her second tooth yesterday.  Another molar.  She has two more that are about to come in too.  The doctors said that Emma won’t go home until she is being Emma and talking and smiling again.  It is easier to keep her than to send her home and have her come back in a day or two.  Last night was the first time she slept for any length of time.  She slept most of the night.  She woke up when the doctors came in this morning.  They forgot to turn the light off, so she cried and the nurse went in and turned the light off and gave her the pacifier and she went back to sleep.  So maybe she is finally getting that much needed rest.  I will post again when I hear more from the hospital. 
Love to all, Grandma Carol

Yesterday (Thursday) Emma was admitted to the hospital again.  She had been battling what we thought was a cold.  On Tuesday, they thought it was pneumonia and gave her antibiotics for that.  Well, nothing was helping.  They told Robin to take her to the emergency room at Children’s.  We go there to register and before they could even put a name band or take any vitals, they were already escorting us back to a room.  We had several nurses and the doctor in immediately.  They started giving her neb treatments and then ordered a chest x-ray.  Within a 45 minutes we were told that she would be admitted.  Of course after several neb treatments, the chest x-ray, lab work and starting an IV, we finally made it to the 7th floor.  We had spend 4.5 hours in the emergency room.  So now we had to repeat some of the same information and the hospital doctor had to come and examine Emma, so it was after 6:30 we were able to go and get something to eat.  Emma didn’t want anyone to even touch her.  Of course, she was ok to cuddle a couple of times with Mommy and Grandma, but other than that, just don’t mess with me.  Emma spent the rest of the evening just dozing and fussing for her pacifier and then dozing some more.  They have told us that Emma has some sort of respiratory virus, but don’t know which one as of yet.  Her breathing is getting better, but she still doesn’t want anyone to mess with her and is not active.  Definitely not going home today.  I will update when I know more. 
Love to all, Grandma Carol

Robin was able to take Emma home shortly before lunch.  The doctor didn’t come to see Emma until 11:00.  Of course that meant that Robin was late for work and the PCA was waiting at the house for Emma to come home.  They contemplated sending Emma home on Sunday night, but the doctor wanted to make sure that Emma got a few more neb treatments in without Robin having to be up every 4 hours to do them at home.  Robin did stay at the hospital in hopes that the doctors would have been in early to release Emma.  They had to call one of the doctors just to make sure Emma was ready to go home.  The doctor on Sunday said that he suspected that it was a viral infection causing the respiratory problems because there is a lot of that going around at the moment.  So hopefully we can now keep Emma on the mend.  (This was day 152 in the hospital since 9/11/07.)

Michelle is back on crutches and in a splint as well.  She re-injured the stress fracture that she had back in May.  So she is on crutches and has a splint on her ankle again.  What a way to celebrate your 12th birthday (which is on Wednesday)! 

So as you can imagine, with Robin and John working all weekend, Grandma was busy taking care of her girls.  With Robin at the hospital and John working early, Grandma went to make sure the Michelle got to school today.  Of course, Grandma being Grandma, took Michelle to school as I didn’t want her slipping and falling on the little ice and snow that we had over the weekend.  She went off to school willingly.

Love to all, Grandma Carol