Saturday, April 21, 2012

A catch up to the present day…

Jackson’s birthday is in February and this year we were going to celebrate in style with a Rock and Roll theme.  Sara and I were super excited about the theme.  We had all the food purchased, a lot of fun decorations, and some activities planned.  We were all set to celebrate Jackson’s 3rd birthday in style.  The weekend of the big event was when Jackson had his prolonged seizure and so we had to cancel everything.  We had every intention of rescheduling the celebration, but time past quickly and we ended up staying in the hospital over the weekend and even on his actual birthday.  With everything Jackson and we went through we decided against having a big celebration.

Jackson recovered fairly quickly almost as though nothing ever happened; I think that we are still trying to recover from things though.  After a few days being home he has been back to his overly energetic bouncy happy self.  Now when I say bouncy, what I mean is…well…picture Tiger times 10.  Jackson bounces when he is excited, bounces when watching Mickey Mouse Club house, bounces in front of the window, bounces down the hallway…he also bounces when he is anxious. Jackson pretty much bounces when he is not sitting in one place.  I know that bouncing is fun, but besides for fun Jackson does this to get some sensory input for his joints and I think it helps him with some of his anxiety.

The week after we came home from the hospital, Sara had to take her car in to get her driver side passenger door replaced.  I drove the rental to work that week so we didn’t have to worry about putting the car seat in it, oh and so we wouldn’t have to pay to have it detailed and cleaned from the gold fish and teddy grams had we let Jackson ride in it.  While Sara was driving around my car she discovered that someone stole the brand new 2014 stickers off my license plates.  Oh how I love the parking garage at Children’s hospital.
Sara and I were both very happy to see Jackson return to his regular activities.  Jackson was going to start school the week after his birthday, but we decided to wait a little while.  We also had to add to his IEP a seizure action plan and make sure the school was ready and trained on what to do if he has a seizure at school.  I know not everyone who reads my blog knows what an IEP is, but that is a huge topic for a different blog.  Jackson started a school a few weeks later than we had originally planned.  Jackson loves going to school.   We were worried about the transition from his other preschool, but everyone who works with Jackson says he is doing really well.

Sara started working part time again as an ABA provider.  She absolutely loves it.  We also put our house on the market. Call us crazy during this housing market crisis, but the bottom line is we need to live in an area that can provide Jackson with support he needs.  We live in an area where there is not very much funding for people with disabilities.  We also live in a school district that doesn’t offer nearly the same type of supports for Jackson’s educational needs.  When the agent came out we thought putting our house on the market in June would be a good option, it would give us time to clear out closets, clean the garage, take care of a bunch of odds and ends….  The agent had a different idea and said that the sooner the better because houses were moving in our area, mostly in part to the amazing early spring like weather we have had in St. Louis.  She suggested putting a sign in the yard as soon as possible, like in less than two weeks.  I felt like we had so much to do even though Sara had put a huge dent on the closets while Jackson was at school, but somehow we managed to get everything done, Sara even power washed the house.  I am still exhausted from the hard work, but the sign is in the yard.  It has been two weeks and we haven’t had any bites yet, but we are very hopeful someone will love our house just as much as we do.

So recovery, taking care of the cars, Jackson starting a new school, and putting our house on the market sums up our last few months.  We have done some fun activities during that time too, but I will need to save those adventures for another post...

Monday, April 16, 2012

Roller coaster turn 5…

The ride home was peaceful.  Jackson was awake for the trip, he loves car rides.  When we got home my dad was sitting in the dining room reading his paper while watching the dogs as they were outside.  Jackson was super cuddly and he didn’t want to be left alone, Sara thought maybe he would want to go laydown, so they headed off to our bedroom.  I pulled some of the important items out of car, leaving the giant bag of clothes in the trunk before dad and I headed back up to the hospital so I could get my car.  My keys were sitting right there on the dining room table.  It was nice to ride with my dad in my old Crapolear, so nostalgic and I can’t believe that thing is still even running.  He claims it still gets good gas mileage.  It started to rain as we headed back to the city; the ride seemed to go much faster than actually did.  Dad and I had a lot of good conversations.

I checked in on Sara and Jackson once I got to my car and asked if she wanted me to pick up some dinner.  I spoke with a couple friends on the way back, letting them know we were released and getting settled in.  They laughed at my misfortune of having to back to get my car, nice friends they are.  Pulling into the driveway with dinner I was hoping not to get mobbed by the neighbors, luckily the rain kept them away.   When I got upstairs Jackson and Sara were sitting in the recliner.   I needed to use the restroom really bad…long trip.  Sara was worried, Jackson still wasn’t being himself and as we were talking to each other, Jackson started to throw up.  All over Sara, some on the new recycler, on the floor, but mostly all over him.  Sara brought him in the bathroom, he started to get upset, Sara started to get herself in the shower to rinse off and he got sick on the bathroom floor.  I started to take off his clothes and handed him to Sara.   While she was getting herself and Jackson cleaned off, I started work on the floors and chair.  I also pulled out Jackson’s mattress so Sara could lay him on that and help with clean up duty.  Jackson was really fussy and didn’t want to lay by himself, so laid with him.  He started to throw up again.  I held him so he wouldn’t get it all over himself, but got a little on myself and on the mattress sheets.  Jackson wanted to lay with me, so after I put some clean clothes on, and changed the sheets on the mattress I cuddled with him.  We weren’t sure if we should worry, call the doctor, or what we should do at this point because he was due for his medicines.  Sara called the neurologist after hours and left a message.  While we waited for the phone call Sara got some apple sauce with medicine in it, but Jackson wanted no part of that.  We kept trying, but he wouldn’t take it and then he threw up again.  The on call neurologist called back, it just so happened to be our doctor.  He asked Sara a few questions and with that we grabbed a few things quickly and headed back to Children’s, this time to the emergency room.  The neurologist didn’t want Jackson to have another seizure or chance dehydration, he said most likely we would end up back on the neurology floor.

We arrived at the ER around 10:30 PM.  The ER was a mad house; there were wall to wall people in the waiting area.  The triage nurse took Jackson’s vitals, asked a bunch of questions, handed us a basin, and directed us to the waiting area.  Sara had panic written all over her face. There was nowhere for us to sit.  Kids with runny noses everywhere, climbing the walls, screaming, misbehaving while their parents are just sitting there not caring at all.  Over the PA they said the wait time was 2 and half hours.  It was then Jackson threw up in the basin.  Sara wanted me to go up front, with the basin to see if we could speed things up.  The check-in guy was more concerned if Jackson got sick on the floor.  I asked him if that would get a room faster, he didn’t seem amused.  I thought it was hysterical, but I amuse myself often. He handed me another basin, took the sample I gave him which at this point it didn’t have any food at all.  I handed Sara the clean basis and went to move our car into the garage.   When I returned to the ER, Sara and Jackson were headed to a room in the back.

Several nurses came and went while we were in the room.  They started Jackson on IV fluids and gave him some Zofran to help his tummy.   We watched the clock turn midnight and quietly celebrated Jackson turning 3.  Then we watched the clock turn 1 AM.  Eventually a nurse came in with Jackson’s medicines and with some yogurt.   She had to run to the cafeteria to get it; they were out of apple sauce and everything else they normally use to hide medicine in.  We knew all along we would most likely be heading back to the neurology floor from the conversation Sara had with the neurologist.  I was getting so antsy because this ER was crazy busy and the last thing I wanted was Jackson to catch any other kind of virus.  I think it was around 2:30 AM when our transport arrived, it was the same male nurse who took us from PICU several days ago.  He said he saddened when the papers came up knowing we had just gone home.  We chit-chatted along the journey and I found out this nurse was one of my childhood camp counselors at camp NEOTEZ. What a small world…we shared some old stories for Sara so she could enjoy.  He took us back to the room we had left from several hours earlier.  They kept Jackson connected to his IV overnight.  I don’t remember much of rest of the night; I completely crashed as soon as I pulled out my little bed.

Since we left in a hurry, all we really had was our overnight bag with all our dirty clothes.  Luckily our phone chargers were in there.  Sara needed to send some email communications. She took our bag down and ran a load of laundry at the Ronald McDonald house so she could take care of the communications.  Sara’s mom came up to visit and while Sara was down there some of the staff came in and sung happy birthday to Jackson.  Sara came back to the room and I headed to down to wait for the laundry to finish and to take a shower. The volunteers at the Ronald McDonald desk told me I needed to get my parent badge updated because it had yesterday’s date on it; I thought they were not going to let me in because they were kind of rude about it, but none the less I got our laundry and took my shower.  I stopped by the front desk to get a new badge for Sara and myself on my way back up to the room.  Later that day someone came by with a gift bag for Jackson with a bunch of goodies for his birthday.  He was excited about the soft fluffy blanket.

Jackson was more alert and he was eating here and there, no more vomiting. They wanted to keep us one more day and take him off his fluids so he would drink more on his own.  He didn’t drink much throughout the day, but not for our lack of trying.  The next morning came and Jackson was doing really well.  Sara and I decided we wanted to have something besides cafeteria food, so I went to get us something. When I arrived to our car I found glass everywhere, the driver passenger door was smashed in, someone had hit our car.  I was so ready to lose it.  I called Sara, she calmed me down a little.  She had me check to see if her iPod was there, it was.  I grabbed our insurance card, took some photo’s with my cell and headed back towards the building.  I stopped at the front desk to report what had happened, they had me call some number which was a courtesy desk.  They were very nice, every apologetic, and were sending a security officer with a camera to the spot if I wouldn’t mind meeting them there.  I went back to the car and waited, it was chilly.  The guard came; she did not bring a camera.  She told me I had to call St. Louis City police to file a report and gave me a number to call, it was the wrong number.  She radioed someone who gave her a completely different number.  She felt the car was broken into, not hit.  She seemed really clueless.  I called STLPD and they said they would send someone over.  I asked them to let the officer know I was going to be at the ER waiting.  The guard walked me over to the ER station where the head of security was.  The head of security asked me details on how long the car had been parked there, where exactly was I parked, and thought that they might be able to get surveillance, but wasn’t very confident they would find anything. Unfortunately they only have one guy who can watch the surveillance and that guy is off until next Tuesday.  I called Sara to ask her mom to bring up a camera if she was coming up since security didn’t do anything.  I also ask the security officer if someone would come clean up the glass, I didn’t get a definitive answer to that.  When STLPD arrived no one from Children’s came with me, but they wanted my cell number.  The STLPD officer was really nice.  He took down all the details, gave me a claim number for my insurance, and said he felt someone backed into the car, but was amazed at how the heck they were able to cause such damage.  After he left I headed back up to the room.  Sara’s mom was there by this time.  I took Sara down with the camera so she could see.  We stopped by the security desk again to get someone to come clean up the glass.  The lead security officer said we could pull the car down by the ER and someone could come vacuum it up when we were on our way out if we wanted. Sara called the insurance company and gave them all the details.

Jackson’s friend Miss Andrea came for a visit, she brought him some birthday gifts.  This helped bring down the tension from all that happened with the car.  Jackson was really happy to see Andrea and he was more himself than he had been since the night he had the seizure.  Sara and I still wanted to get something to eat from outside the hospital, so Sara’s mom gave me her keys.   I stopped at Einstein Bagels to get all of us some food.  It was just after noon and they were out of almost every bagel.  Sara wanted a veggie bagel with turkey, they snarked at me letting me know that would be extra.  There were only 3 workers; all 3 looked like they just got out of bed.  Their uniforms were dirty, the dining area was dirty, and there were not very many customers in the dining area at all.  I should have just walked away, but instead I patiently waited.  The girl who rung up my order was terrible, I had to repeat each sandwich like 4 times to her and she didn’t smile once, she was rude and robot like.  While she was ringing me up, I was watching the two guys make the sandwiches.  One of the guys was venting to other using various curse words.  I just rolled my eyes.  When I got back to the hospital I was fuming about the service.  Then on the elevator ride to the neurology floor a mother and daughter were having a conversation.  The daughter used her cell phone to take a picture of herself in the mirror above to which her mother called the “R-word”.  The daughter said, mom… in that teenage way to which the mother again called her daughter the “R-word”.  The other people in the elevator were looking at each other uncomfortably and I just stood there, frozen.  I was afraid there would be a brawl because I knew that I would not be able to control my anger to let them know that I was on my way to see my very sick son who happens to have a mental imparement and the use of the “R-word” is derogatory and demeaning to me.  I was so upset that I started shaking.

When I got to the room, it was written on my face.  Then Einstein’s forgot Sara’s turkey and my sandwich was disgusting.  With everything we had been through to this point, I wasn’t going to let this one ride.  I called up Einstein’s to complain, asked for the supervisor up front who actually answered the phone.  I told him that my order was messed up and he knew right who I was because he was the guy who made my sandwiches. I asked him why on earth did a bagel store not have any bagels to put sandwiches on, his response to me was, “Sorry ma’am, we got our asses handed to us.”  I responded, “excuse me”!  He said, “Oh sorry, we were really busy today”.  I asked him if I could speak with the store manager.  He changed tone quickly, continued to apologize, and said the manager was not in the store.  I asked for his name, the guy did not want to give it to me. He asked if he could give me a voucher, to which I said he needed to mail it to me. He said he couldn’t do that, but if I went online I could sign up for a coupon, I would need to come to the store to get his voucher.  He offered to give me my money back for the sandwich they messed up, I said no…that is not enough, you need to refund my entire purchase. He said, sure…I can do that for you.  He then asked me what time I would be up to get my refund.  I said, no…you can refund my card that I just used.  He told me he couldn’t do that, he could only refund me in cash.  I raised my voice in anger to him that I took time out of my day from my son who is in the hospital to receive crappy service, pay for food I didn’t get, and that I was not driving back to his store to pay the meter again to get a refund he should be able to do from the computer register that rung me up.  He responded that he could not do that, but maybe I could come get is some other time.  I told the guy that I would not be coming up to get my money that day.  So he said he would write my name on the wall to the receipt he could reprint.  So I questioned that… you can reprint my receipt, but you can’t refund my card…that makes no sense to me.  They guy kept trying to apologize, but that wasn’t enough for me at this point.  There was nothing else this guy could say to me that would make me feel better at all.  I also told him his staff needed serious training, he came back with the girl who rung me up was only on her 3rd day.  I think I said something like, well if she hasn’t learned the register by day 3, then she isn’t worth keeping, not to mention she didn’t have any people skills.  I gave up and hung up.  I have never been back, not even to get my refund.  Seriously folks, this really happened.

The nurse came in to let us know we were going to be released soon.  Sara and I asked them if they had any trash bags or something we could use to clean up around the car.  They took us to someone who was cleaning rooms at the time who let us borrow a broom and dust pan.  They also gave us a bunch of towels.  Sara and I went to our car and I knocked out what was left of the window and swept around the car and the seat into the pan.  Then I laid the towels down over the seat to keep anything small from blowing around in my face. Sara and Jackson were going to ride home with her mom while I took the car home.  I figured I would have at least an hour home before they finished the paper work and stuff to get things straightened up, especially since we had some messes from the vomiting and stuff. I sprayed everything with Lysol and cleaned up as much as I could.  Then started a load of clothes when Sara called me; they were pulling into the driveway.  She said when she got back to the room they were ready to let him go home.  Jackson was very unsteady on his feet and didn’t want to go far from us, but he was alert and smiling.   We knew we had a few more days of him recovering, it also seemed like we had some much to take care of…but none of that seemed to matter because we were finally home.    

Wednesday, April 4, 2012

Roller coaster to the 4th power…

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…