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Emmett’s Story

My name is Emmett Ibach and I am 12 years old. Because of my birth, I have severe hypoxic ischemia (lack of oxygen to the brain that causes many neurological problems), severe irritability, a sleep disorder, and a seizure disorder. When I was born, I was not breathing and was sent right to the NICU. I had a ventilator overnight and had seizures immediately. Surprising everyone, I went home after 16 days. I have continuous trouble with irritability, sleep, seizures, and feedings. I take many medications to help. I require 24 hour one-on-one care and have a nursing care. I have a feeding tube in my tummy to eat. I can't walk or talk in the conventional way, but definitely show others when I am happy, sad, and mad! I can be extremely irritable at times, but when happy, I have the biggest and best smiles. I like to give Hi-5's and my favorite show is Barney! I have a 10 year old brother named Ethan and a 7 year old sister named Emma who I love very much.

Latest Journal Update

Happy 12th Birthday Emmett!!

November 1st, 2015

Happy 12th Birthday Emmett! It is so hard to believe Emmett is 12 years old today! Today we celebrated our Emmett and showed him how much he is loved! Happy birthday to our now big guy!

My last entry was in June, and no news has not meant things are fine.  We keep plugging along and take one day at a time.  Emmett's seizures unfortunately didn't stay away in June.  In fact, they got  worse and changed in appearance.  At that point in time, we were still trying to decide what to do for a neurologist.  Emmett had appointment the end of July at Gillette for his Pamidronate infusions, so I called and also set up a neurology consult.  Well our 3 day infusions turned into a hospital stay.  Emmett was directly admitted from the neurology clinic at Gillette.  He was hooked up to the EEG electrodes for 5 days, which showed status seizures, not good.  Emmett went through a few medications trials in the hospital, but none were helping much at all.  Finally a combination was doing the trick and Emmett was able to go home after 7 days.  However, when we got home, the seizures came back in full force.  Ever since we have been juggling many different seizure medications with dosage changes constantly to try and reach a point of stability.  There have been a few stretches with relief throughout the months, but for the most part, Gillette Triage is on speed dial.  In order to get the seizures to subside, one of the medications had to be significantly increased.  This made Emmett very lethargic and he could barely keep his eyes open all day long.  The beginning of October found us going back to Gillette for a clinic appointment and again many medication changes, which leads us to the last three weeks.  Over these weeks, the medication making Emmett so sleepy was being decreased while a new one was added and increased slowing.  Everything seemed to be going well until severe agitation started yet again.  Since Emmett has a history of C-diff, we had that checked to rule it out. Well, it came back positive.  Just great, another bout of c-diff, but at least an answer to the agitation.  However, we weren't so lucky.  Even after two weeks of treatment for the c-diff, Emmett continued to become progressively more agitated with each passing day.  I talked with the neurologist last week and some medication changes were made again thinking one of them may be the culprit.  Saturday I thought Emmett was doing better, but today he has gone downhill fast.  It is now midnight and he is miserable.  I really don't know what to think at this point.... which med is making him like this?? could it still be the c-diff?? is his brain in status seizures but not showing clinical signs (that unfortunately is what my gut is telling me)?? I just took some video of Emmett and emailed them to the neurologist to look at hopefully first thing in the morning.... will see what tomorrow brings.

If you are still with me.... we still had a really special day celebrating Emmett's birthday.  We did get lots of smiles despite everything he is feeling.  That is our boy... such a brave trooper! Today our focus was cake, kisses, and cuddles with the birthday boy! Happy 12th birthday to a very special guy! We love you Emmett!
6 people hearted this



Sherri Nelson
Happy 12th Birthday, Emmett! I can't believe you are already 12 years old! I hope that you are feeling better soon! You are such a trooper!
Lisa Gilbertson
By Lisa Gilbertson
Happy 12th Birthday Emmett. You bring so much joy to everyone! I hope and pray for answers to help you feel better. ❤️
Debbie Klevgaard
By Paul and Debbie
Happy twelfth Birthday Emmett! Praying that answers are found and that you can find rest! You are one lucky guy to have parents that are so persistent in finding answers! God's blessings to you and your family!
Corena Green
By Doug & Corena
Praying you can get answers for Emmett! Poor guy! Each of you have been on a hard road! You are an amazing family! God is carrying you through each day when you feel exhausted and with no more medical answers. We continue to uphold each of you in prayer. God will give you strength. We send our love and hugs! Take care!
Brenda Patzner
By Brenda Patzner
Emmett is such a Trooper! Despite what he goes through on a daily basis he continues to smile and show his love for all of your. What a special boy! Happy Birthday kiddo! Prayers for comfort and answers.
Love The Patzners