My name is Emmett Ibach and I am 10 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 nurse during the day. I have a feeding tube in my tummy to eat. I can't walk or talk in the conventional way, but definitely vocalize when 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 love to be held and rocked. I have a 8 year old brother named Ethan and a 6 year old sister named Emma who I love very much.
June 17th marked day 33 in the PICU and also the day Emmett was able to go home!! HOME! Whatever a wonderful place! If you are a follower of facebook, I posted a great selfie of all of us with Emmett the evening he came home. Our smiles couldn't have gotten any bigger! The medication Cogentin is what helped turn things around for Emmett. The first couple weeks Emmett still struggled, but as time passed his irritability improved. Emmett came home on extremely high doses of Ativan and Methadone, doses that are even very high for an adult. Because of this, his digestive system was not doing well at all. Emmett has very significant G.I. issues and this just amplified it tremendously. Since discharge, we have been very slowly tapering down the Ativan and Methadone. Emmett has come a very long way with this, but he still has a very long way to go yet.
In July, Emmett had appointments in the cities with his infectious disease doctor, neurology, orthopedist, and endocrinologist. The endocrinologist did numerous lab tests. Emmett has severe bone demineralization, which is a huge contributor to his compression fractures. The doctor discussed the options involved with trying to improve this, one of which involved medication infusions. Right now we are waiting to see him again at a followup appointment in January. Some of the tests are extensive and take a long time for the results. Emmett has still struggled with respiratory troubles since discharged from the PICU. The infectious disease doctor sent cultures to the lab and Emmett was once again fighting an infection and was put on an antibiotic. Emmett struggles with severe G.I. distress from most all antibiotics, so this is always a challenge. The infectious disease doctor and I talked extensively about Emmett's immunoglobulin infusions that he receives once a month for immunodeficiency. After having eleven I.V. sites in less than a month at the PICU, Emmett's veins are shot. His left leg even developed a superficial thrombophlebitis, which was causing him a lot of pain. He wouldn't straighten his leg at all and would startle and flinch every time one tried to move or straighten his leg. (superficial thrombophlebitisis is a common inflammatory-thrombotic disorder in which a thrombus develops in a vein located near the surface of the skin) Emmett had an ultrasound done on his veins that day, which showed that the inflammation was superficial. It was decided to keep watching it closely and if it worsened to call right away. Over the next week, it did slowly get better and eventually was not bothering Emmett any more. Because of the vein issues, we decided to put the infusions on hold and see how Emmett does without them. Those veins need a rest! Neurology updated and adjusted Emmett's taper schedule for the Ativan and Methadone. Our beloved Dr. Gilles has been out of the office for a couple months now for personal reasons. This has been hard. She knows Emmett so very well and has been our life line since Emmett was 7 months old. I have felt very lost and alone without her expertise and true understanding of ALL Emmett's complex issues. The Orthopedic doctor said Emmett's kyphosis and severe demineralization is what caused the new compression fractures in the thoracic vertabrae. He orderd a new TLSO (back brace). Emmett has definitely outgrown the one he is wearing now. Unforunately this was not able to be molded the same day.
Emmett's respiratory infection cleared, but once off the antibioic, it came back. This time it was affecting his oxygen levels. He was cultered again, but this time the doctor didn't think an antibiotic was needed yet. Emmett did eventually work through this episode on his own, which is rare for him. We did lots of trach suctioning and pushed the nebulizers.
During this whole time we have been struggling with finding caregivers. Emmett's day nursing stayed the same. However, because Emmett now has a tracheotomy, our respite provider for evenings and weekends could no longer provide services to Emmett. They did not have the qualified trained individualsl to care for the tracheotomy. We were very sad that we lost two very wonderful and caring respite caregivers. There is a shortage of nurses out there, so our new provider is having trouble finding qualified nurses. We currently only have one person who has been trying to cover a lot of hours.
In August, Emmett was stable enough that we took a family trip to Chicago. Grandma Eileen also came with to help us out. On the way there, we stopped in St. Paul for a couple doctor appointments. Emmett saw neurology again to adjust and fine tune the taping of medications, however still no Dr. Gilles :( Then we headed over to Gillette for the molding of his new tlso (back brace). Emmett also had new AFO's molded (leg braces). We found out that Emmett no longer fit his AFO's because of growth and swelling from infiltrated I.V.s. When we tried putting Emmett in his stander, Emmett was miserable because of the AFO's not fitting. The stander is on hold until we get the new leg braces. After the appointments, we headed to Chicago! The drive was tricky because Emmett has been having trouble with a pressure sore on his tailbone, which was quite significant. We had to do a lot of stopping to take Emmett out of his chair. Overall, the trip went very well. Emmett had one bump in the road with a high fever and respiratory symptoms. This slowed our sight-seeing down for about a day. Thankfully Emmett was able to pull through and no emergecy room was needed! (we were very thankful, for we have visited the emergemcy room in other cities and did not want to add Chicago to the list!)
As soon as we got home, Bill and I had teacher workshops, and the kids started right after! Emma is in 1st grade and Ethan in 3rd grade this year! Emma was super excited to start school. Ethan was too, he just wouldn't admit it! Emmett and Ethan are in the same classroom this year. Ethan was so excited and proud to have his big brother in his class. This made me so very proud of Ethan! He is so sweet and caring with Emmett at all times. He asks evey morning if Emmett will be in school, and tells me at the end of the day what Emmett did in class with him. Emmett starting running a fever the first week of school, so he was not able to attend much the first couple of weeks. He didn't have any other symptoms, so we were not sure what was going on. However, one morning there was blood draining from his ear. Off to the doctor we went and came home with an antibiotic for an ear infection. This is the very first ear infection Emmett has EVER had! The first antibiotic did not clear it totally, so he is just now finishing the 2nd one. Of course the G.I. issues and irritablity became an increased issue again on the antibiotics.
Here we are at the beginning of the 3rd week of September. Like I said, how time flies! Some days are good and others I feel like I am trying to keep my head above the water. This week will be a trip to the cities for Emmett's back and leg braces. This usually is a long whole day process. Ethan and Emma are back into the school and fall activities routine. My rhuematoid arthritis has been telling not so gently to slow down, but I don't listen until it is too late. Today I have surpassed it being too late!
Thanks for checking in on Emmett. It has been a long haul.