September 17, 2013: I took my mom (Grandma Judy) on the second trip to the Mayo Clinic. Tom and I had already missed so much work and we just figured they would give us the new medication and we would return home. Although I knew things were not going well, I was shocked when the neurologists came in the room in a panic at Chase's EEG test results from earlier that day. They hypsarrythmia (the abnormal brain pattern between seizures consisting of high amplitude and irregular waves and spikes in a background of chaotic and disorganized activity which helped the doctors diagnose his condition), was no longer intermittent but constant. Basically he no longer had any normal brain activity. The 2 weeks between the last EEG showed remarkable progression of his condition.
The spinal tap and all of the other tests results came back unremarkable, so there was no known cause for the Infantile Spams. I was told this was the best circumstance to have. However, I was told we had a VERY small window of time to get these seizures to stop for Chase to have any chance of leading a somewhat normal life. They said we needed to start the ACTH steroid injections immediately and Chase would need to be admitted to the hospital for monitoring the first few days, as there are very serious side effects. In addition, we needed to be taught how to give the injections at home. I agreed without even calling Tom. I knew he would want me to do anything possible to help Chase.
It was almost 6:00 pm and the Mayo Clinic offices were closing and we needed to go over to St. Mary's Hospital. The regular hospital admissions were closed for the day, so they had us report to the Emergency Room to be admitted to the hospital. The next few hours is a completely different story for another time, but I did NOT need to see what I did in the ER after learning this bad news! Whew!! I am still trying to erase those visuals from my head.
Chase had his first injection that night. He did not sleep well after that, but I had no clue what was about to happen next with him. The stay in the hospital was the most insane time. I was there by myself (Grandma Judy had a bad cold and had to stay at the hotel), and on top of Chase not sleeping more than 1 or 2 hours at a time, a different doctor, resident or nurse from several different departments, social worker, hospital chaplain, arts and crafts person (not kidding), or any other person you could possible think of came walking in the room literally every 8 minutes. It is a teaching hospital so there were a couple of times there were literally (I would count as they surrounded Chase and I) 10+ people in the room at one time. It was overwhelming. My cell phone rang every half hour, from Tom, our church, our daycare, Early Intervention in Fargo, to the medication manufacturer, to Walgreen's Infusion Center trying to line up the shipment of the drugs to our home (which was a complete mess.) The next few days in the hospital were miserable.
The hour or 2 I could have spent sleeping at night, I lay in my hospital cot crying and screaming to God to do something! I talked to my mom about our anger with God. Over a lot of tears, she gave me the best advice I could have ever received. She told me- NOW IS NOT THE TIME TO TURN YOUR BACK ON GOD. I got it. I turned it around and started praying. I promised God I would do ANYTHING if he saved my boy's brain.
Chase became a "wild man" just as they said would happen. He did not stop moving and I was afraid he would hurt himself on the hard floor and sharp edges in the hospital room but he pulled my hair and bit me when I picked him up. I put him in the crib often and he would bang on the sides of the crib like a maniac He ate nonstop. They said he would be hungry and gain weight but I did not anticipate to what extreme this would happen. He was put on a number of other preventative medications due to the side effects of the ACTH: Zantac to protect from stomach bleeding and ulcers, Bactrim to prevent infection, pyridoxine (Vitamin B) to help with seizures, and he was still tapering off of the anti-epileptics Sabril and Keppra. Chase's blood pressure was extremely high, so he was put on Diurine. The nephrology team had to keep checking on him and were concerned with possible kidney damage. The ACTH (Acthar Gel) was being shipped to Minneapolis and took time to get insurance approval. Once he had started the injections he could not stop, so even after Chase was released from the hospital 3 days later we had to move to a hotel and go in for injection appointments at the infusion center of the hospital morning and night. Tom had arrived the day we were being discharged from the hospital because he was losing his mind not being there with us.
Chase's blood pressure still did not lower so he needed a one-time dose of isradapine and they held us for hours the morning we thought we could leave to go home. The dose of Diurine was then doubled going forward and they finally let us go. The discharge plan was that Chase would receive the full ACTH dose for 2 weeks and we would return to Mayo for an EEG. If there was no longer the hypsarrythmia we would begin tapering him off of the ACTH for 2 weeks after that and he would be done. It was very dangerous to take this any longer, as long-term use caused many health complications and even diseases. His immune system was compromised so he could not go to daycare during the time he was receiving injections. Plan B was to add another medication, Topiramate, to his treatment if the spasms did not decrease within one week.
We received the call that morning that the Acthar Gel was in Minneapolis at the Walgreen's Infusion Center, so we could pick it up on the way home. We were informed there that we needed to be VERY careful with the medicine, as each injection dose was just under $7,000. At 2 injections, that was $14,000 a day, for a month over $400,000!! Luckily, my health insurance covered every penny. We arrived home on Saturday, September 21st and were on our own to juggle this new complicated schedule of injections and medications, which was very scary.
The spinal tap and all of the other tests results came back unremarkable, so there was no known cause for the Infantile Spams. I was told this was the best circumstance to have. However, I was told we had a VERY small window of time to get these seizures to stop for Chase to have any chance of leading a somewhat normal life. They said we needed to start the ACTH steroid injections immediately and Chase would need to be admitted to the hospital for monitoring the first few days, as there are very serious side effects. In addition, we needed to be taught how to give the injections at home. I agreed without even calling Tom. I knew he would want me to do anything possible to help Chase.
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| Chase's EEG on September 17 |
It was almost 6:00 pm and the Mayo Clinic offices were closing and we needed to go over to St. Mary's Hospital. The regular hospital admissions were closed for the day, so they had us report to the Emergency Room to be admitted to the hospital. The next few hours is a completely different story for another time, but I did NOT need to see what I did in the ER after learning this bad news! Whew!! I am still trying to erase those visuals from my head.
Chase had his first injection that night. He did not sleep well after that, but I had no clue what was about to happen next with him. The stay in the hospital was the most insane time. I was there by myself (Grandma Judy had a bad cold and had to stay at the hotel), and on top of Chase not sleeping more than 1 or 2 hours at a time, a different doctor, resident or nurse from several different departments, social worker, hospital chaplain, arts and crafts person (not kidding), or any other person you could possible think of came walking in the room literally every 8 minutes. It is a teaching hospital so there were a couple of times there were literally (I would count as they surrounded Chase and I) 10+ people in the room at one time. It was overwhelming. My cell phone rang every half hour, from Tom, our church, our daycare, Early Intervention in Fargo, to the medication manufacturer, to Walgreen's Infusion Center trying to line up the shipment of the drugs to our home (which was a complete mess.) The next few days in the hospital were miserable.
The hour or 2 I could have spent sleeping at night, I lay in my hospital cot crying and screaming to God to do something! I talked to my mom about our anger with God. Over a lot of tears, she gave me the best advice I could have ever received. She told me- NOW IS NOT THE TIME TO TURN YOUR BACK ON GOD. I got it. I turned it around and started praying. I promised God I would do ANYTHING if he saved my boy's brain.
Chase became a "wild man" just as they said would happen. He did not stop moving and I was afraid he would hurt himself on the hard floor and sharp edges in the hospital room but he pulled my hair and bit me when I picked him up. I put him in the crib often and he would bang on the sides of the crib like a maniac He ate nonstop. They said he would be hungry and gain weight but I did not anticipate to what extreme this would happen. He was put on a number of other preventative medications due to the side effects of the ACTH: Zantac to protect from stomach bleeding and ulcers, Bactrim to prevent infection, pyridoxine (Vitamin B) to help with seizures, and he was still tapering off of the anti-epileptics Sabril and Keppra. Chase's blood pressure was extremely high, so he was put on Diurine. The nephrology team had to keep checking on him and were concerned with possible kidney damage. The ACTH (Acthar Gel) was being shipped to Minneapolis and took time to get insurance approval. Once he had started the injections he could not stop, so even after Chase was released from the hospital 3 days later we had to move to a hotel and go in for injection appointments at the infusion center of the hospital morning and night. Tom had arrived the day we were being discharged from the hospital because he was losing his mind not being there with us.
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| Chase passed out long enough for us to enjoy lunch at Mac's in Rochester, the day after we were discharged from the hospital |
We received the call that morning that the Acthar Gel was in Minneapolis at the Walgreen's Infusion Center, so we could pick it up on the way home. We were informed there that we needed to be VERY careful with the medicine, as each injection dose was just under $7,000. At 2 injections, that was $14,000 a day, for a month over $400,000!! Luckily, my health insurance covered every penny. We arrived home on Saturday, September 21st and were on our own to juggle this new complicated schedule of injections and medications, which was very scary.
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| What a relief! Picking up the medication that was our last chance of saving Chase's brain! |
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