My name is Emmett Ibach and I am 11 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 9 year old brother named Ethan and a 7 year old sister named Emma who I love very much.
Exactly one year ago today, June 7th, Emmett had surgery for his trach. In one way, it seems just like yesterday, and in others ways it seems so very long ago. The trach journey has definitely had its ups and downs. A major positive is that it has helped to keep Emmett out of the hospital for a year! Wow, that is a major accomplishment! Emmett has never stayed out of the hospital for a whole a year! On May 16th, 2014 we called the ambulance for severe respiratory distress and Emmett was intubated in the emergency room. We spent 33 very emotional and difficult days in the PICU. Over the years, Emmett's hospital stays have become a blur, but this one will forever be etched with powerful emotions and difficult decisions. Emmett was discharged June 17th, and he hasn't been back since! For this we are so very thankful! A downside of the trach is caregivers. Now, only licensed nurses are able to care for Emmett, and finding nurses is an ongoing challenge and always a stress. We are very limited with who can care for him, which poses many difficulties in the daily schedules of our whole family. However, it is our "normal." Some days it is easy to accept, and on the difficult days, not so much. The one thing I truly miss so much is hearing Emmett's big belly laughs. There is a device to put on the trach in order to allow speech/sound, but it makes it very hard for Emmett to breathe, so we do not use it. Maybe some day...
Even though Emmett has thankfully stayed clear of the hospital, difficulties have been often and frequent. In February, I was hit hard with some sort of influenza, which Emmett also got of course. His progressed to the point of severely coughing bright red blood out his trach. This was very scary since we were still learning the whole trach business. He ended up with an inhaled antibiotic through his nebulizer, along with many CPT vest treatments and steroid nebulizers. His respiratory status recovered quite nicely. However, his G.I. issues went downhill fast. He struggled with old brown bloody discharge from his g-tube and severe bloating and with that comes severe irritability. Emmett ended up having an intestinal infection called c-diff. He has been struggling with this all spring. He barely finishes the antibiotic to treat it, and after a week it comes back. He has had three bouts of c-diff in the last few months, just finishing the 3rd bout last week with an extended course of antibiotics. He has been so miserable all spring and it breaks my heart to see him suffer and I couldn't do much to help. Sleep has been pretty much nonexistent. He also started having seizures again, and they were very hard and intense. He had not had a seizure for so long, so it was very concerning and disappointing for them to surface again. However, finally over the last 3 to 4 days, our Emmett has started to slowly feel better, giving us more of his big smiles and the seizures have subsided! The seizures correlated with the c-diff, and hopefully was most likely his body reacting. He even slept a little better last night! Sleep has been a lifetime issue for Emmett, so it probably won't last, but I will take one night at least! Now how do we keep him feeling well!!
In April, we spent three days as an outpatient at Gillette in the cities for Pamidronate infusions. These infusions are to help increase Emmett's bone density, and hopefully decrease the occurrences of compression fractures in his spine. Thankfully he has not had fractures in other parts of his body, but as he grows and gets older the doctor said this could be very likely because of his poor bone quality. Emmett will have these infusions every four months with the hopes of more time between doses as his density increases. The infusions take 3-4 hours minimum each day, three days in a row. The side effects of the medication are flu-like symptoms, and of course Emmett had these symptoms hit him hard throughout and for a few days after-wards. We are told that hopefully with future infusions the affects will not be as intense. He is scheduled for them again the end of July. During the April trip, Emmett also had a nutrition consult and a neurology appointment. Emmett has gained 10 pounds since getting his trach! This is great since he is definitely on the small side for his age. However, we don't want him to keep gaining at this speed, so minor adjustments to his calorie intake were made, along with some mineral supplementation. The theory is that he doesn't burn as many calories with the trach, because he isn't trying to keep up with getting enough oxygen, which makes sense. At the beginning of April, we found out our beloved Dr. Gilles had left Childrens. We were/are devasted. We met with the NP at the visit in April who is trying to help us sort out the next step. Dr. Gilles has been Emmett's neurologist since he was 7 months old and has gotten us through many hard times. She is not replaceable, but we are trying to move forward to find the best care for Emmett.
Emmett also continues with his weekly immunoglobulin sub-q infusions. These are for his immunodeficiency. We are able to do them at home with one of his home care nurses, and it involves 4 needle pokes each time and takes about 2 hours to complete. A common side effect is headaches, which I think Emmett experiences because he always shows more distress for about a day after. Emmett is such a trooper with all his infusions. I wish we didn't have to put him through it all, but I hope we are making the right decisions to help keep him well.
Summer is here and along with it comes a very busy schedule for us all! I am praying Emmett will continue to feel well so we can take him out for some summer fun!