What’s been going on with our little guy…
Last week at this time Jonah was in the hospital. It all started last Thursday (03/12/2009) when Jonah began having the dropping spells again. The best way I can describe it is it is he momentarily loses control of his body. Ben describes it as if some one turns off and on the lights for him. I am not sure if he loses consciousness or not, but his body goes limp and he falls forward. Usually he does not have time to catch himself. It started in the morning and after several bouts through out the day I called his Pediatrician’s office. The last time Jonah had these spells his doctor thought it was caused from an ear infection throwing off his equilibrium. Just a few days prior he finished 10 days of Amoxicillin and during that time the dropping spells stopped. When I spoke with the Physican’s assistant at Dr. Hodson’s office I explained what was happening and she said Dr. Hodson would call in a prescription for a stronger antibiotic.
Unfortunately, before I could go pick-up the prescription Jonah had a passout spell, fell forward, and hit his forehead on the tile in the kitchen. I had just filled his sippy with apple juice and turned for a second to put the apple juice away in the refrigerator. As I was closing the door I heard Jonah hit the floor and I gasped. Dang, all day I was watching him so closely and in a split second this happened. He started crying and I rushed over to him to pick him up and check him out. As I was picking him up his body stiffened and he went into a seizure. I carried him over to the couch and laid him on his side. Of course Elijah was frantic asking me if I was going to call the paramedics again. (As a similar thing happened 21 days prior and I called 911 in a panic, where he was brought to the hospital in an Ambulance). I asked Elijah to get me the phone as I watched my poor little guy having another seizure. This is one of the hardest things a parent can see. I feel so helpless. In tears I frantically started calling Ben, but he wasn’t answering. Then I called my in-laws, and my father in-law answered. While bawling I unsuccessfully tried to compose myself, and said, “Jonah just passed out again, fell and hit his head, and is having another seizure’. My father in-law told me they would be right over. Within the next few moments Jonah’s seizure stopped and he fell asleep. A huge lump was protruding from his forehead. I put a cold cloth on his forward and tried calling Ben again. I finally got a hold of Ben and told him what happened and that his parents were on their way over.
Once John and Teri got to our house, Teri (G’ma) sat with Jonah while John and I rushed to Target to pick up Jonah’s prescription. When I got back Jonah woke up enough for me to hold him and give him some medicine. When Jonah is not feeling well and most of the time he is very much a Momma’s boy and only wanted me to hold him for most of the night. Grandma Teri did manage to hold her baby grandson a few times and around 9 pm we all settled down in the living room and put on a Barney episode for Jonah to watch. Barney is one of Jonah’s favorite shows. When we were a few minutes into the show, I commented on how far the bump on his forehead protruded when G’ma looked down and said, “What is he doing?”. Jonah went into another seizure. Worry took over me as I helped G’ma put Jonah on his side. G’ma started praying over Jonah as I cried and held Jonah’s hand and caressed his arms and back. After it was over I took his temperature. This seizure was unprovoked. He didn’t have a fever, what could be causing this? The panic and worry started turning my stomach and I immediately called his Pediatrician’s office. As the office was closed, I eventually received a call back from the on-call Doctor. Dr. Fledderjohn was very comforting and gave me instructions on what to do through the night. She told me to wake Jonah up in a little bit to check if he acts normal, if he is alert. She strongly advised me to call the Neurologist the next day to get Jonah in for evaluation. She was concerned that Jonah has had so many seizures in the last year and now they don’t seem to be Febrile seizures anymore. She also said to call their office the next day if the Neurologist couldn’t see Jonah the next day. Dr. Hodson (Jonah’s Pediatrician) could talk to the Neurologist’s office and hopefully get him in sooner.
I was able to get Friday off and I was so grateful since Friday turned out to be a hard day for all of us. Thursday night was rough too. I am a light sleeper and I was so worried for Jonah that I couldn’t sleep. My stomach was in knots. Every time Jonah moved, it startled me. I was sick to my stomach worried that he would have another seizure. Friday morning we woke early, after Jonah had a couple of bananas (his favorite) around 9 am I gave Jonah another dose of his antibiotics. Once again we put Barney on for him and within a short time he fell into another seizure again. This time I looked at him seconds before it started and saw his little body go limp, so I laid him on his side and held him. Ben and I couldn’t help to think there was a connection between Barney or the antibiotics as possible triggers. After the seizure passed I immediately called the Neurologist’s office to see if he could be seen that day. The earliest appointment we could get was for Tuesday, so I then called Dr. Hodson’s office. As we laid next to our sleeping baby we waited for an answer. I jumped when the phone rang at 11 am. I guess I did manage to close my eyes and catch a small nap. Thankfully Dr. Hodson’s referral assistant managed to get Jonah into see Dr. McGuire (Neurologist) at the Carmel office at 1:40 pm. I stirred Ben and gave him the news. I felt so bad for him too. We were both trying to catch any moments rest since we both did not get much sleep the night before. After I got ready I called Jill to ask her to come over later to be here when Elijah got home from school. Since the Neurologist office was 40 minutes away I was unsure if we would be back for when Elijah got home at 3:50 pm. I am so glad I called Jill. Our conversation was very comforting to me. She was glad to hear we were taking Jonah into see the Neurologist and she was so supportive of our decision to get him in for evaluation. Of course she was worried for our little “neeners”.
On our way to the Neurologist’s office Jonah had another seizure. We pulled over to unbuckle him and move him to his side and when the seizure stopped we once again started on our way to the Doctor’s office. We got lost! After we got turned around and had to back track we finally got to the Doctor’s office 10 minutes late. As I was filling out the paperwork Ben put Jonah on the floor and was supporting him with is legs as Jonah played with my purse. Seconds before the Doctor walked in, Jonah had a passout spell again and bump his head on the floor. He got a carpet burn right next to the bump he got the night before. Dr. McGuire walked in as Jonah was bawling. During the first part of our visit with her Jonah soon calmed down and feel asleep. Dr. McGuire took took down his history and discussed with us her thoughts on what could be happening. As she examined him she expressed her concern on how his body was not reacting to her poking and prodding. She strongly felt it would be best to get him into the hospital for tests. She did not want to send us home on a Friday and it would not be easy for us to get Jonah in to see a Doctor over the weekend if he had more seizures before Monday. She direct admitted Jonah to St. Vincent’s hospital in Carmel.
We immediately headed over to the hospital and got him admitted around 3 pm. As we were speaking with various Doctors and Nurses Jonah had another seizure. Before the night was over he had one more and the nurses gave him a medicine via IV that would stop the seizures. Between 5:30 pm on Thursday and 5:30 pm on Friday he had 6 seizures. That night was a blur. Ben and I were exhausted, emotionally drained, and weak from not eating. Throughout the afternoon and evening Jonah under went a EEG, EKG, MRI, Spinal Tap, and Urinalysis. He was sedated for the MRI, Spinal Tap and Urinalysis. The Neurologist reviewed the EEG and MRI preliminary results and did not see any issues. However she decided to start him on anti-seizure medication the next day. By 10 pm Jonah was sleeping soundly and Ben and I tried to settle down and sleep on the hard futon in the hospital room. At some point in the night I moved to Jonah’s bed to protect him from falling off the bed or pulling out his IV. As the sedation wore off, Jonah tried to get up, he was very unsteady and unhappy with all of the tubes and cables attached to him. Ben and I took turns laying with Jonah. The next day Jonah could not be contained. The side effects from the sedatives made him hyperactive and unsteady. He could not walk without holding our hands. He walked like he was drunk. From 7:30 am until 10:15 pm we walked around the Children’s hospital and visited the play area many times. We covered ever inch of the 3rd floor. The effects of the sedative given the night before made it so he literally could not stay still. Since he only took a small nap from 3:00 pm – 3:45 pm (interrupted by the nurse taking his vitals and giving him his anti-seizure medicine), we did not get a chance to get much sleep. Dr Patel (Dr. McGuire’s Neurology partner) met with us Saturday afternoon and cleared Jonah to be released. He viewed the MRI results and the other preliminary test results and said he did not find anything that they felt would cause the seizures. He explained the medication Jonah would start taking and evaluated Jonah one more time. Soon after Dr. Furr came in to evaluate Jonah and she did not see any ear infection or other issues. Though, she decided to keep him one more night. She said the other Doctor’s concurred with her that Jonah must have a slow metabolism and thus it was taking a long time for his body to get rid of the Pentabar. Finally around 10:15 pm Jonah settled down and went to sleep for the night. Ben left to go home to work on his homework, take a shower, and hopefully get a better night sleep. Saturday night was a better night for both Jonah and I. At 4:30 am Sunday the nurse woke us up again to take Jonah’s vitals and have me give him is anti-seizure medicine (Keppra). He got a Popsicle for being such a good boy and letting the nurse do her thing. So there we were 5 am on Sunday morning watching cartoons as Jonah enjoyed his Popsicle. At 5:30 am Jonah fell back to sleep and we enjoyed a few more hours rest. At 7:30 am Jonah was up for the day. A few more Doctor’s visits and many more trips around the 3rd floor of the hospital and we were set to be released. Ben arrived around 11:30 am and we were on our way home.
Elijah spent Friday night and Saturday night with G’ma and G’pa. We are very thankful that G’ma, G’pa, Jill and Quaid helped us out with Elijah while we were at the hospital. Elijah got to spend Saturday (03/14/2009) with Jill, Quaid, Caleb and had a super fun day. I know Elijah is very concerned for his brother and that weekend was hard on him, he is a trooper!!!
Jonah has been taking Keppra twice a day since Saturday. So far he is doing good. The other test results from Friday (03/13/2009) came back and they have not found anything concerning. Jonah did have a slight elevation of platlets and white blood cells which the nurse who called with the results said that usually indiciated a slight infection. Jonah has a follow-up appointment with Dr. Hodson this Monday. We will talk with her then and see if he should continue with the antibiotics.