Emma Kissock – Emma’s Syndrome

Hello all:

Sorry I haven’t given an update sooner, but it’s been kind of crazy around here.  We brought Emma home on Saturday, and so we’ve been trying to get used to her being home and trying to catch up on everything that didn’t get done while we weren’t home.  When we are home Emma has been wanting to cuddle more, so I’ve been mostly trying to tend to her.  She’s actually sleeping at the moment.  They think that her breathing problems were caused by a respiratory infection.  She is on an apnea monitor at the moment, but we’re hoping that after her follow up appointments with everyone that she won’t have to be on it.  If you have any questions, please let me know. 

I want to thank everyone for their prayers, as they have helped tremendously as Emma is just fine and now home with us!!!!!

Love always,

Robin, John, Michelle and Emma

4:30 p.m. Thursday — We just got a call from our son-in-law John to say that Emma is out of surgery, in recovery, and it appears everything went well with the hernia repair.  She should be discharged from the hospital either tomorrow (Friday) or Saturday.  The doctors did a second sleep study and have determined/decided that what they thought was sleep apnea was just the respiratory infection.  They do not have a cause yet for the abnormal EEG though, but John said they are not going to worry about it now; it may be something Emma out grows.  John and Robin are both still pretty tired and emotionally drained, so keep them in your prayers.  They said to thank everyone for the prayers; it was very uplifting for them to read all the messages and realize there are people all over the country praying for them and Emma.  Thank you very much, Anita.

Emma’s surgery went very well.  She will be going home tomorrow or Saturday.  They also did another sleep apnea test and it was normal.  They will still send her home on a monitor for a month or so, but they were hopeful that her breathing problems stemmed from the respiratory infection that she had. 

Grandma Carol

Hello all:

Sorry that it’s been a little while since the last update.  There hasn’t been a lot to report until now.  We just got the results back of the MRI that she had done yesterday, and it was normal.  The only thing that it showed is that she has a lot of fluid in her ears, so she has an ear infection.

The other day she had a CT scan and that was normal.  She had an EEG which showed some abnormalities, but they’re not sure what’s causing that yet. 

She is still having surgery on Thursday.  While Emma is sedated for her surgery, they are going to do what they call a bear test on her ears to see if she can hear or not, since she hasn’t passed any of her hearing tests yet. We’re not worried about that, because she does hear…..she will turn towards sounds.

Tonight they are going to do another sleep study on her to see if there are any changes from her first one.  Tomorrow Michelle, John, my mother and I will be taking a CPR class because they are sending Emma home on apnea monitors and we will need to know CPR in case Emma stops breathing.

If you have any questions, please let me know.  I’m trying to remember everything that has happened the last few days, but everything is running together.  I hope everyone is doing well.  Have a great day!!

Love always,

Robin Kissock

Hello Everyone:

9/12/07 – noon

Emma’s surgery for Thursday, September 13 has been cancelled.  Last Thursday morning we had Emma to the ER because she was having difficulties breathing.  We found that she had a slight case of pneumonia.  Sunday monrning we had her to the pediatric urgent care because she wasn’t eating a lot and her breathing hadn’t improved.  So they added some more medicine.  Tuesday morning we had her pre-op appointment and they said that because she was still sick, they were going to cancel surgery until she’s better.  The doctor wanted us to give her a call in the afternoon for an update on Emma since she had only eaten one ounce of fluid that morning.  When I called and talked to the nurse, Emma had onlyl one wet diaper that day and only a total of 7 ounces of fluid.  They called me back and told me to take Emma to Children’s Hospital.  We took her in and they kept her overnight for observation.  So far she has been eating better since they took her off the antibiotic since it looks like the pneumonia is gone.  She is still very congested and having a hard time to breathe at times which is why we’re still here at the hospital for now.  We just wanted to give you an update as to what’s going on with Emma.

Michelle has started 5th grade and seems to be enjoying being back at school and she keeps worrying about her little “ticket muncher” (her nickname for Emma because of her breathing).

If you have any questions, plealse let us know.  We will send another update when we know something more.

Love always,

Robin, John, Michelle and Emma

Update – 5:30 p.m. 9/12/07

We have now talked to the neurologist and he said that she is not having any seizures, but she does have some abnormal readings on her EEG.  She also has an overactive reflex in both of her legs which he thinks is linked somehow to her rolling her eyes to th back of ther head and the abnormal EEG>  He wants her to have an MRI of her brain to see if that show anything unusual.  He also wants us to talk to a genetic counselor because they may have some ideas as to the link of all this.  John and I are just hoping that they’re not like the first one we talked to when we had the amnio, since if we would have listened to her advise, we wouldn’t have Emma.  We sill don’t know when we’ll be able to go home yet, but Emma is at least eating.

Update – 10:00 p.m. 9/12/07

Emma has developed a version of sleep aphnia.  She takes 4 breaths, and then doesn’t breath for 10 seconds.  This patter has been continuing.  So they have her on a monitor to watch this.  She will have to have this on until tomorrow.  They are not real concerned, but just being cautious and monitoring everything.

Next update will come another day.

Love Grandma Carol

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