After another week of keeping him home from school he was able to back to school and try to return back to his normal activities, with an exception of finishing out his track season. He was bummed that he was not able to keep up with track as he used that as an off season conditioning for football; his favorite sport. We were able to go back to our Boy Scout and Venturing meetings where we were starting to finalize the troop and crew’s plans for summer camp; which is the highlight of his summer. Within two weeks the school was calling and letting me know that my son's grades were dropping and he was struggling. He was an A/B student who scored high proficient in math and advanced in both reading and science on his MEAP test this last school year. The school and I worked out a plan to get him the extra help that he needed, by pulling him out of our school's award winning band (against his wishes). All while I was fighting with the insurance company to get him started in the outpatient Physical Therapy and Occupational Therapy that were ordered at the time of his release from the hospital.
On May 29th my son was feeling better and I allowed him to go on his class trip to Michigan Adventure. That morning he was dropped off at the school and rode the charter bus the three hours to the park. As his class was unloading from the bus to break into their groups to enter the park he went down. He had another Grand Mal seizure. The school official called the EMS; and they took him to the local hospital. I started to rush toward the hospital as soon as I got the call from the school. When in route I got another call letting me know that my son was being intubated and air lifted back to Helen Devos Children’s Hospital. When I reached the hospital I found my son in a coma again, and learned that this seizure lasted 75 minutes (a seizure shouldn’t last more than three minutes). After three days he woke, to my relief he did not have the difficulties walking that he did the first time. We spent a total of six nights in the hospital with this stay with many more test all coming back that there is nothing wrong; but we could look at him and see something is not right. The hospital gave the insurance company the push that they needed to get the approval for him to start his outpatient Physical Therapy and Occupational Therapy as well as adding Speech Therapy. At this time I made a very difficult decision and filed for the Family Medical Leave Act to be home with my child who had just been diagnosed epilepsy. The thing that made the decision so difficult was I had only been back to work a month after being laid off for six months.
Five days later my son got a really bad headache and I rushed him to the local ER afraid that he was having an extreme migraine that would bring on another seizure. Luckily he did not, the hospital pumped him full of drugs (because of his history) watched him for a few hours and sent us home. After that evening my son and I decided together that we should skip Scout camp this year; the first in four years that we would of missed. A few days later I noticed that my son’s arm was hanging funny almost limp as well as his speech was slurred more than it had been. I called his doctor and he told me to take him back to the ER as he thought this may have been prelude to another seizure. Back to the local ER we went; where they watched over him for a few hours and again we were shipped back to Helen Devos Children’s Hospital. Where they kept us over night for observations; when no seizure came about they thought this may have been caused by stress. It was suggested that he start seeing a consoler to talk about everything that is going on in his life now and the past. So being the protective mother that I am; I set up a meeting for him with a child consoler for him to get some more therapy.
Only one week after being home from the hospital in Grand Rapids I noticed that my son was starting to wheeze when he breathed. I took him back to the doctor thinking that he had developed asthma. After two weeks of antibiotics, steroids and using inhalers it wasn’t getting better; it was worst. Every breath he took was a struggle and his wheezing could be heard from another room. Back to the local ER we went on July third; X-rays and MRI of his throat and chest showed that his trachea had almost closed completely off. They called Helen Devos Children’s Hospital for them to send up their big chopper with a doctor on board to transport him back to Grand Rapids. I followed behind them down US-131; all the while knowing this was another life and death situation for my son. Once back in the ICU they tried to get his airway to open back up with breathing treatments for hours. It was very touch and go; Devos’ teams were on standby as three surgeons looked over the MRI to see if they could perform the necessary surgery to enable him to breathe again or if they would have to air life him to U of M for a tracheoplasty. After hours the team decided that they needed to get him in the OR and if needed they would transfer him after the operation they would; but he was not stable enough to transfer at that time at that time. The doctors were able to open his airway back up with balloon dilation that morning. We were kept over Fourth of July weekend for observation and he had a second dilation done the following Tuesday. With a third scheduled to take place July 28th.
Between hospital visits both at our local Northern Michigan Hospital and in Grand Rapids we are driving to different doctor offices across Northern Michigan and specialist in Grand Rapids at least three days a week. We have house hold expenses that have been stacking up since I have had to use the last of my saving to buy gas and food for my family. With the rent already behind and disconnect notices coming in from the utility companies we are to the point that we are looking for help.
Thank you for your time and considerations,
Mike and Family
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