We are getting ready to leave the PICU and it is around this time I start to feel some nasal drainage and my throat is hurting. A nurse comes to guide us to our new living quarters, as he is wheeling Sara qho ia holding Jackson he apologizes for it taking so long to come get us. He explained that it took longer than normal to get another child settled on the floor. Little did we know we would be sharing our room with that same child, Cayson. When we arrived in our new room, there were no curtains to divide the room. Both Jackson and Cayson were in quarantine because both were waiting on some test results they both had done in PICU. Cayson had a serious upper respiratory infection along with his frequent seizures. Cayson and is grandma, Cathy, were both asleep when we came in, so we tried to be really quiet because it was so late. It was around that time that my body was ready to crash from exhaustion; I think we were settled around 2:00 AM. Shortly after falling asleep Jackson’s roommate was received a breathing treatment from an Oscillator, which is an inflatable vest that is attached to a machine that vibrates at a high frequency to loosen up mucus. After a few minutes, the machine pauses and then someone uses a suction device to extract the mucus. I couldn’t tell you how long these treatments lasted, but the machine is very loud and it seemed like forever. After the treatments were finished, Cayson would cough a lot, sometime throw up, and sometime have seizures. Some of the seizure would cause him to stop breathing which would set off all kinds of alarms. I felt so bad for this little guy; he wasn’t much older than Jackson. It was a rough night to get any sleep, but Jackson and Sara didn’t seem to be affected by it.
The biggest differences between the PICU and the neurology floor are you are allowed to have food in the room and you don’t have a nurse that only sees you, the nurses have multiple patients. You still have a dedicated nurse, but if they are busy with other patients, you have to wait….unless it is an emergency. Since both boys were under quarantine, every nurse or doctor that comes in the room puts on a disposable gown and gloves. If they leave the room, even to come right back in, they have to toss it, and put on another one when they re-enter. I wish I would have invented these suckers because it is crazy how many they go through in day. Maintenance came up and put some up some curtains to divide the room and give some privacy.
Sara’s mom came up to visit. It took a while for the neurology doctors to come talk to us. We made it clear down in the PICU that we did not want to speak with a particular neurologist who Jackson saw when he was 18 months. The reason being this neurologist thought it was unnecessary to have Jackson tested for Fragile X syndrome because insurance doesn’t usually cover the test cost and the therapy treatments are the same as Autism Spectrum disorders. This doctor’s philosophy is backwards if you ask me, his thoughts are why would you want to test for a genetic inherited mental impairment vs. a diagnosis based on behaviors? Idiot! This doctor’s name is Dr. Paul Golumbek for anyone who wants to know, he doesn’t come recommended by the Hamilton’s. We chose not to listen to him and have the test done anyway. Two neurologists came in with our daily nurse. We went over Jackson’s medical history and we mentioned we had seen a neurologist at Children’s when Jackson was 18 months, but that we wish not to EVER work with him again. I was very open with our reasons why. The two neurologists were empathetic to our reasons. They wanted to schedule Jackson to have an MRI of his brain while we were here, we told them he had one here when he was 18 months which they said was good so they could compare the two, see if there were any changes. Jackson slept the entire time they were in the room, but they explained that he would most likely be like this for a few days considering what he had been through. They also felt we would most likely go home the next day or by Wednesday. We were excited about the news of going home, but concerned that Jackson was just sleeping because that is so not normal at all for him. The doctors told us that it might take a few days for Jackson to be back to his 100 % self and didn’t seem overly concerned. Since it was late in the day the MRI did not get scheduled in time for Monday.
Tuesday morning came and we still didn’t have a scheduled MRI, so we asked our nurse. Sara sent me on a coffee run to the Starbucks which is in Barnes hospital which is luckily attached to Children’s however it is nice jaunt. Sara also wanted an everything bagel, or breakfast sandwich if they had them. The line was really long when I got there, only two workers. There were no bagels that I could see, but a chalkboard that said they had croissant or biscuit egg sandwiches with sausage or bacon. Unfortunately they were out of croissants and sausage; also the lady seemed very annoyed that I asked for such a thing and two of them for that matter. How dare I order something off the menu! No carriers for the coffee and tea, no bags for the sandwiches. How dare I even ask for those! Luckily for me attached to the Starbitches is Barnes and Noble. So I carefully balanced my sandwiches and carried my two cups of very HOT liquid over. Barnes and Noble had breakfast bars, Jackson’s favorite food ever invented, so I grabbed a few of those. The worker here was very nice and gave me a bag, not very big…but enough to do the trick. The walk back to the room seemed like it took forever. When I got to the room I felt drained and told Sara I was not leaving the room for the rest of our stay.
Jackson was in and out of sleep during the morning, he still wasn’t much himself. The nurse came in and said the MRI was scheduled for late afternoon, so Jackson could have liquids until 11:00 AM. Jackson didn’t seem to get too crabby; normally he would eat his way through the day. Sara’s mom came up to visit and Sara’s BFF, Cray, brought us some lunch. In the late afternoon we took him down for his MRI. He was very cuddly before the MRI, after the MRI he was slightly agitated. He was hungry, which is a good sign. We didn’t have to wait long in recovery since we had our own room. Jackson ate some food and then he rested. He watched some Mickey Mouse and rested some more. Since the MRI was late they decided to keep us one more day since Jackson still wasn’t much himself and also so we could go over the results the next day.
Wednesday morning came along. We started to get things packed up. Jackson’s ABA therapist, Mrs. Kari, came up to visit. During Mrs. Kari’s visit Jackson was very alert and played catch with her (see video below) and he was eating some snacks. This was the most Jackson had been more like his normal self. Sara’s mom came up to visit later that day as well. It seemed like forever before the doctors came to visit with Jackson’s MRI results. They carted in a computer with the images. The MRI showed no changes between his first one at 18 months and the one from the day before, so what great news. They found hippocampus on the left side of his temporal lobe abnormal, it was tilted. They explained the hippocampus is responsible for long term memory and the seizure Jackson had was not related to this abnormality. We asked if this should have been noticed with the first MRI and I think both doctors were afraid to answer that question to be honest. The answer was maybe, it just depended on the way the doctor looked at the results and it was something he was looking for, which to me is confirmation that our last neurologist at Children’s is an idiot. We also asked if this was common with Fragile X, that answer was maybe too. There are a bunch of studies regarding the hippocampus function and both doctors seemed very knowledgeable on it. One of the doctors shared a story of someone who had both hippocampus removed who lived a long life. Before giving us the results they knew we would have questions, but they also wanted us to take our time in developing them for our follow up visit. Jackson was sleeping during this time, the doctor ordered prescriptions for an anti-seizure medicine and an emergency medicine. Both doctors felt Jackson could go home today. All the information is so overwhelming when you are in the hospital; you hang onto every word, but have limited time for the information to sink in. My interpretation when giving people information was calling the hippocampus a hippopotamus. I know at the follow up visit we will have a lot of questions along with Google research.
Our nurse came in with a video for the emergency medicine. Jackson was waking up around this time, so we put Mickey Mouse on the TV and played the video on our portable DVD player. It was around lunch time so we ordered something for Jackson to eat. We decided to take our belongings down to the car, when we realized Sara had left my set of keys at home, so we have two cars with only one set of keys. I called my mom to see if she could run by the house, grab them, and bring them up, but my dad had the spare house key and he was at work. We still were not sure what time we were going home either, so I arranged my mom to have my dad still swing by the house to let the dogs out and if we were home around that time, maybe he could run me back up to the hospital if he didn’t mind. We loaded Sara’s car with our stuff, went by the imaging center to fill out a release form so they could send the results to Dr. Elizabeth Berry-Kravis in Chicago, and picked up the prescriptions. Sara’s mom watched over Jackson while we did all these things. While we were waiting to be released a bunch of student doctors came up wondering if we minded if went over Jackson’s medical history and if they could ask some questions. We always love to help out, so Sara gave them great detail about Jackson’s medical history. During this time, Jackson also wanted to take notes so we gave him paper and pen. He was so cute, he would scribble on the paper, look at the med students, laugh along with everyone, throw the pen across the room…ah there’s our little man. It wasn’t too long after that we were released to leave. Jackson left in style was we carted him out in one of the hospital wagon. He was all smiles, although he was laying back and didn’t seem to care that there were other stuff riding with him. Normally he would be tossing everything out. We were happy to be leaving, but were uncertain of how long Jackson would not be quite himself.
To be continued…