Roller coaster part III

Sara and I went to the cafeteria for breakfast after the doctors were done.  My stomach was still in knots, but I was able to eat a little. Even though I felt relieved I was still afraid I was going to miss something.  We made a few phones calls and text messages, but our phones were getting low on juice.  My mom came up to visit for a bit and Sara’s mom came back up too.  We didn’t know how long we were going to be there, but the doctors said at least a day or two more in the PICU. Jackson would stay there a full day after they remove his breath tubes, then they release you to a room on a different floor.  That meant we had to cancel Jackson's birthday party we had been planning, it was going to be on Sunday. My mom took me home so I could pack us a bag of clothes, some toiletries, our phone chargers, grab the iPad, grab Jackson some clothes, take a shower, and get our car.  I wanted to make it quick and get back as soon as I could, but I kept getting texts, can you get this, can you get that, can you stop at Walgreen and get this.  I was also getting text from other people asking how things were going.  Then after getting everything including the kitchen sink, there is an accident blocking Walgreens.  They wouldn’t let you take the road either and directed back the direction you came.  I bet it was some idiot who thought the right turn lane only lane is just optional and if you speed up fast enough you can pass and cut off all those people who are in line, some who are probably on their second light cycle, and then no blinker or warning they come over into the left lane then flip you off, but this time they slammed into the car because it was bumper to bumper and they didn't have any room to get over, so they tried force their way in.  It happens at an intersection that I live near and it irks me to no extent when I am cut off, have to slam on my breaks, or even get pushed over into the center lane because of these morons. Silly that I let that bother me, I know….but who the F*CK do they think they are that they don't have to follow the signs like everyone else.

Any way, so I scratched Walgreens all together, even though there is one on every corner, I am so worked up and I just want to be back at the hospital with my little man.  I get back to the hospital and say to Sara, I don’t want to leave here until we all leave here.  A few hours later my BFF Andie texts me and asks if we want food and a visitor.  We promptly said yes and yes…Bread Co. please.  Sara’s mom stayed in the room with Jackson while we visited with Andie and Denise, another childhood friend.  We went down to the Ronald McDonald waiting room.  This waiting room is nice, ran by volunteers with comfy recliners and a full kitchen.  Very Luxurious compared to the other waiting rooms, but only open from 9 AM to 9 PM. Denise shared some funny stories, mostly tragic about something that happened to her, but that we can laugh out now.  It was really what we needed at that moment.  Then Andie came with us to visit with Jackson. Before they left Andie asked if there was anything she could do and I asked her if she could stop by our house to take care of the dogs, let them out and feed them.  I hate asking for help, but she without a doubt said of course.

The doctor that night said Jackson was doing really well and he wanted to remove his breathing tube, Jackson had been breathing on his own for a few hours, but they decided to wait until the next day to remove the tube because there was another child with an emergency that night and they didn't want to chance the doctor being tied up.  We were obviously OK with waiting.  Sara’s mom left and we tried to tackle the sleeping arrangements.  Word on the street a good place to go was the lounge on floor 9, so Sara stayed in the room with Jackson and I went to the 9^th floor.  There was only 1 guy at the time, but his flip out was right under the TV which he had on Sports Center with the volume on full blast and he was fast asleep.  His crack was hanging out on one side, his belly on the other.  I took the furthest flip out from him, covered it with the hospital sheets, laid down with my hoodie over my head, and covering part of my face.  Then the farting began, this guy’s trumpet was louder than the TV.  OMG…really, is this really happening.  Eventually he turned the TV off.  Then around 2:00 AM a couple came up to join in on the sleeping, or lack of. They were grandparents of a child who was brought into the PICU earlier that night.  I know this because they were having a loud conversation about it.  The wife picked the flip chair just a few feet from me, I did not move, but my goodness she smelt like she smoked a full pack of cigarettes before coming to bed and she was wheezing like Marge’s sisters on the Simpsons. Her husband took a flip chair across the room from her, close to Mr. Fartsalot, and he is shouting across the room to his wife.  Are you comfortable? Blah, blah, blah..  Finally the two settle in and how they fell asleep is beyond me.  All 3 of my new roommates are snoring, at one point I lifted my arms and started conducting the most amazing symphony.  I left the area around 5:00 AM and headed back to Jackson’s room.  I didn’t care if Sara was sleeping, but at least I could get away from the ciaos. Sara didn’t know I was there, she was out like a light.  I had to wake her up for doctors’ rounds and it was not easy.  The doctor wanted to remove the tube today because of Jackson’s progress and would be back after rounds to go over the details.  So Sara and I went down for breakfast.  A few hours after breakfast, Sara’s stomach started feeling bad. 

My parents came up to visit shortly after they removed Jackson’s breathing tube and his EEG cords.  I had asked my mom to stop and pick us up some Gatorade (blue and red), gum and combos for me, and Reese’s butter cups for Sara.  I love my dad…but forget that he can overkill when it comes to this.  They brought in a case of blue and a case of red,  a family size bag of Reese’s, 4 bags of combos, 1 package of cheese and crackers, a multipack of gum, pepper beef jerky, and year supply of Rice-a-Roni the San Francisco treat.  OK, not the Rice-a-Roni…but all the rest is true.  Sara and her mom go down to the Ronald McDonald waiting room while my parents are visiting.  My mom and dad didn’t stay too long. My sister and sister-in-law, Katelyn and Tricia, are on their way up to visit as well.  I know hospitals are not easy for my family after my brother Donny's year of in and out for his cancer treatments, not to mention the Children’s hospital is attached to where he stayed. Sara comes back, running into Katelyn and Tricia on the way up.  Sara says she is not doing well, been in the restroom a lot.  Jackson is waking up around this time, he is not fully awake, but he is not comfortable with all the wires.  I am trying to keep him from ripping everything out, so I am not able to talk to my sister or sister-in-law at all.  Sara leaves the room, when she comes back she said she didn’t make it to the bathroom and got sick in a trash can in front of the nurses’ station.  She wants to go home and asks if my sister-in-law can drive her since Sara’s mom had been up here and can help with Jackson.  After everyone leaves, Sara’s mom and I took turns with trying to keep Jackson from pulling out his stuff overnight.  We were able to get them to order something to help him with the discomfort and let him sleep.  They really wanted him to be awake as much as possible, but overnight I thought was craziness.  We both stayed in the room overnight.  I think since he wasn’t in emergency status, they didn’t really care.  The next day Sara woke up feeling a little better, but not 100%.  We didn’t know if it was flu or cafeteria food.  I was hoping the cafeteria food and figured I was immune to it because the same place that runs the hospital cafeteria is the same as my work cafeteria, which I renamed to barfateria years ago for a reason.  Sara’s mom left after doctor rounds while Sara was on her way back up. I made Sara wear a mask just in case.  Jackson did really well all day and they discharged us from the PICU in the middle of the night/early next morning to the neurology floor where we would be for the next few days. I believe it is Monday at this time, around 1 AM, but hold tight because the adventure doesn’t end here…

To be continued..  

Roller Coaster part deux..

So while Jackson is flying in the helicopter, we are driving to the hospital. Usually I am the chauffer when it comes to going places, but Sara takes the wheel.  That was probably a good thing because I would have tried to drive 100 mph to get us there.  I was so nervous, my stomach was in knots.  I don’t remember if the helicopter unit told us where he was going, but when we arrived at the front desk at Children’s we just told them our son was flown via helicopter they printed us tickets to go to the PICU (pediatric intensive care) on the 7^th floor.  I felt like we couldn’t get up to the floor fast enough, but when we got up there we couldn’t see him right away and we were directed to the parents waiting room.  This waiting room was absolutely disgusting.  There was trash everywhere, people had left their food trays on the tables with their half-eaten food, and it did not smell good at all.  I was having a lot of restroom issues (TMI I know) which is common for me with my nervous stomach, but I hated having to go so often in fear I was going to miss the doctor.  While we are sitting a man walks up to us asking if we are the Hamilton family.  He has some papers with him.  We think he must be a nurse, an administrative person, or doctor as he sits with us and starts asking us some questions.  I notice his name badge and under it says chaplain.  My thoughts go to a bad place right away, why are they sending this guy out to talk to us… is something bad happening, did Jackson take a turn for the worst?  While I am trying not to think those things, Sara tells him that we are Jackson’s moms and is giving this guy Jackson’s medical history and he listens intently.  He says a few comforting words, you are in the right place, there are a lot of really good doctors here speech…  I am not sure at this point if Sara realized this guy wasn’t a doctor or nurse, but she gave him great detail on Jackson's history.  I trying not to laugh at the fact that when he first came to speak to us we told him that we were both Jackson’s moms and in most of the God like religions our lifestyle is highly frowned upon.   He tells us he is going to go take a look and let us know how things are going since no one else has come out to speak with us since we arrived.  Once I knew he was far enough away I bust up laughing and ask Sara and her mom if they noticed his chaplain badge, then we all laugh.

I honestly thought that chaplain would not return to us, but he did. The first thing he said to us was, “They have 15 people working on Jackson now.”  My heart just sank…I am picturing these people all around him and someone shouting, “CLEAR!”  Then the chaplain says, “He is in great hands, all these people are really good at what they are doing…..someone should be out here to talk to you shortly, everything is going really well.”  I wanted to punch this guy in the face, even though he was trying to be comforting and nice, why would tell nervous parents that there are 15 people working on their child. He then asked us if he could say a prayer.  I am not against prayer or the belief of God…so don’t get me wrong here, but I find it hard to bow my head in prayer.  I’ll give you a little background.  My family is Lutheran, but my mom always felt that we could choose whatever path we wanted when we got older and we did not attend church that much growing up, but it mostly because of judge mental words other church members used against our family once when we were leaving a service.  They made sure to say it loud enough for my mom to hear, I will never forget that day. When I was in middle school thru high school I went to a small local Church of Christ on the regular with some friends and attended church camp over the summers. I had developed a zeal for the Lord.  I read the Bible a lot.  My senior year a friend invited me to a different Bible study and that made me question my walk, my baptism at birth and rebaptism as a teenager, my faith, and the church that I attended for so long.  I wanted to learn so much more and attended several more Bible studies and started attending this church, it too was a Church of Christ, but it was different.  Then I started recruiting people to come to my found church, I became a disciple of Christ, and I was rebaptised again. I know 3’s a charm right….  I attended the church for just over a year, babysat  many members’ kids for free on the regular, thought I was walking a good walk.  Like most churches they encouraged dating within the church, but there were not a lot of teenage boys that attended, which was fine by me I didn’t need to date anyone to be happy, I wasn’t lonely or looking anyway.  Then one day my Bible leader questioned my faith and asked me a lot of questions that made me feel very uncomfortable. This was normal for leaders to do this, but this time it was enough to send me running out the door and question everything I learned over the years.  Apparently I reminded her of her own battles, but she repented, healed her true feelings, and married a man from the same walk. Ironically that question was if I had ever had or acted on feelings for other girls, and if so I needed to admit that and repent for those feelings. I was not ready to admit at that time that I did have feelings for other girls to myself let alone to the someone else; I was hiding my true self for years because of the teachings that said being gay was wrong, it was a sin.  It wasn’t until college I faced those religious fears of being my true self, thank God. LOL!  Anyway…the chaplain gave a prayer and I didn’t burst into flames. 

It was around this time that I realized I hadn’t called my parents to let them know what is going on, it was around 11:30 PM then.  I was surprised my mom answered and she didn’t sound groggy, but it was a Friday night.   I told her about the EMT, the awfulness of St. Agony’s, the Charlie Chaplain, and that we were awaiting a nurse or doctor to tell us more details.  She asked me if wanted her and dad to come up and I to wait.  We still didn’t know what was going on, if we were going to be there long, or what.  So I told her I would call her back when I had more details, but to stay home and get some rest because I would need them for sure later.  Just as I was finishing up a doctor came for us.  He took us back to a conference room, which was for whatever reason set to a subzero temperature. He started giving us the details when another doctor came in.  He told us that Jackson had suffered a long term seizure and his blood pressure had dropped dangerously low.  They are running several tests to rule out viral and bacterial infections, but that they are giving him antibiotics just in case.  There is a central line in which to give him medicine and an arterial line to keep him sedated.  They are planning to hook him up to an EEG so they can monitor his seizure activity over the next few days.  The neurologist spoke in more details on that.  They want to do a spinal drip to make sure he doesn’t have meningitis, that made me freak out the most for some reason.  He asked us we had any questions.  All I wanted to know was is he OK and when could we see him.  Sara had so many questions, which is why we are good match because I am just staring off into space and everything the doctors say sounds to me like the Peanuts School Teacher.  I am the rub some dirt on it kind of person, Sara wants to know all the details; we switch hats when it comes to health department.  He answered all our questions and said it was OK to see him, but only for a moment because they still had some tests they needed to perform. The doctor also informed us that Jackson is connected to a lot of wires and machines, but not to be alarmed by that.  He took us back to see our baby.  When we went into Jackson's room he really was hooked up to a lot of wires and even though the doctor told us, I still wasn’t that prepared.  There was a nurse and someone who works from neurology hooking up the EEG stuff. Sara was asking the nurse a lot of questions and she was answering every question very efficiently, night and day difference from the ER at St. Agony's. The neurology nurse told us we could touch him and talk to him.  We couldn’t stay long because they had some more tests to run, but they would come get us when we could be with him full time.

We went back to the smelly parent waiting room. It has been about an hour, so I called my mom. This time she sounded groggy.  I told her everything the doctor told me.  She said she would come up the next morning or afternoon, my dad had to work.  We sat in that waiting room for a few hours, we were all getting antsy.  The doctor eventually came back out to let us know he was going to get some sleep before rounds, but told us that he was on call. He didn’t anticipate he would be needed for Jackson, but that we would be able to go back with him shortly.  I think another hour passed before we were allowed to go his room, it was around 4:30 or 5:00 AM.  The rules of the PICU no more than 4 visitors in the room, parents and/or grandparents visiting hours need not apply, only one person can sleep in the room at a time, and no food.  The doctors make rounds starting at 7:00 AM, but we were room 20 and the PICU was full.  I knew we weren’t going to be sleeping.  Sara’s mom went home to get some rest of her own after seeing him for bit.  The nurse came in and out of the room a lot in next few hours.  When the doctors made it to us for rounds it was around 9:00 AM.  There is a group of 8 -10 doctors that discuss the events of the overnight evening.  They go over every detail.  When they hooked the EEG up to Jackson, he was still showing seizure activity.  So he had a seizure that started around 8:15 PM until 11:30 ish, a little over 3 hours.  He had been given anti-seizure medication at St. Anthony’s and them more at Children’s.  The seizure had stopped and no further seizure activity had occurred. His blood pressure is stabilized and he is responding well to everything.  They were giving him many different antibiotics for just about everything until all the test results came back, one of which made him blotchy, so they started him on Benadryl before giving him that.  The detail they give each child is completely amazing.  The other doctors ask the your leading doctor questions, I was completely overwhelmed and blown away at this point knowing that we are in the best hands possible.  I felt at that moment I could take a sigh of relief.

To be continued..  

Roller coaster part 1

Hello my followers, sorry I have been MIA from sharing our experiences in the blog world.  We have had so much going on and I haven’t been giving myself the opportunity to write.  I have been reading the blogs I follow which truly inspire me.  There are so many wonderful families out there.  It is amazing to me the similar experiences my Fragile X bloggers write about.  Our children are just special, they are exceptional.  I get teary eyed when reading about the accomplishments and obstacles that are overcome, just as I do when watching sport movies with powerful endings. “RUDY, RUDY, RUDY!!!” It just gets me every time…   I feel like I personally know these families from their pictures and stories.  They give me so much hope for my son and his future along with assuring me that we are doing the right thing as parents.  I feel a deep connection with these families even though I have never met most of them.

One of the biggest common topics I read in the FX web ring is how hard sleep is to come by for our kids.   Fragile X parents can relate to these stories of sporadic sleep patterns, or the difficulties in getting our kids to bed.  It’s not that parents of typical children don’t run into problems with putting their kids to bed because I am sure they do, it is just different.  Jackson as a baby was easy to get to bed and for the most part he slept through the night.  He eventually reached an era where he would have a night or two a week with difficultly staying asleep.  I remember walking him up and down the hallway for an hour or two, facing forward so he could see instead of nuzzling his little head into my chest like I was familiar with when my siblings were younger.  As Jackson got older, the sleepless nights started to overtake the sleeping ones.  We tried melatonin and it seemed to help at first, but non-consistently.   Then there was extended release melatonin. Then there were other medicines our FX doctor had us try until we found a good match.  The sleep schedule was Jackson takes his medicine between 7:30 – 8:00 PM and then within 30 minutes we head to our bedroom where Jackson watches Mickey Mouse Club House while laying on me to fall asleep.  Once he falls asleep we then transfer him to his bed.  This is one of the main reasons I haven’t posted a blog since December because this has overtaken my nightly me time.  

Eventually we will incorporate a visual sleep schedule for Jackson so we can take me and our bed out of the equation, but that idea seems so far away now.  A few weeks ago Jackson had a prolonged seizure that started just after he fell asleep.  Even though the seizure happened as he was laying on me and there was no physical indication that he was having one, had he been in his bed we wouldn’t have known at all.  The type of seizure he had wasn’t one where you shake and convulse all over the place. We thought like every other night he had fallen asleep because it sounded like he had just started snoring.  When Sara went to move him off me and to take him to his bedroom his eyes were open and fixed in one direction.  She picked him up, but he didn’t move or flinch.  His body was limp and he wasn’t responding to anything.  We both started calling his name, but nothing…no response.  Sara quickly called the doctors exchange, but before she hung up we both knew we would be calling 911.

When the EMT’s arrived we wanted them to take to us to Children’s Hospital, but the lead EMT said he didn’t feel that Jackson would do well with that far of a drive. The closest pediatric emergency hospital to our house is St. Anthony’s and we did not want to go there, but were told we had no choice.  The EMT called for backup.  After that he phoned St. Anthony’s to which they told him not to bring us there.  WHAT! That gives you a good indication of why we didn’t want to go there in the first place…  The EMT told St. Anthony’s that there is no other choice, this is the closest hospital, and to call Children’s Hospital for transport.   Sara is freaking out, the EMT is trying to keep her calm, and he tells us only one can ride, but Sara wasn’t having that.  A second ambulance shows up at the house so that someone can drive while the lead and the rookie EMT can work together on trying to get an IV in Jackson.  This rookie had no clue where anything the lead was asking him to get.  He was pulling open every compartment and drawer.  Meanwhile the new driver is slamming on the gas and breaks like it was his first time driving.  The lead EMT had to keep yelling up at him as we took many turns on two wheels.  Even though we were buckled in I still felt like the school bus kids in South Park rolling from one side of the bus to the other.  

We finally arrived at St. Anthony’s, but the ridiculousness did not end there.  There was no sense of urgency from any of the staff; it was like no one really cared.  Everyone was dressed in scrubs, so you couldn’t tell the nurses from the doctors.  There was one lady who seemed to be in charge, but she was fumbling around and seemed disorientated.  She asked us how much Jackson weighed and then tried converting his weight from pounds to kilos out loud.  She then went over to a chart to figure out what dosage of medicine to administer, again without urgency.  Meanwhile another nurse had been poking Jackson like crazy trying to get an IV in him.  6 sticks in the fold of his elbow, nope that didn’t work, 6 sticks in the wrist… finally.  They took a bunch of blood samples before giving him any medicine. They took his temp, it was around 99.  They took his blood pressure and felt it was good, but I don’t remember anyone saying out loud what it was.  They had to intubate him, but the X-ray showed the first try was not successful, so they had to do it again.  People were coming in the room and leaving, but all at the pace of a snail.  It seemed like a lifetime went by before Children’s transport to get there, but when they did everything turned around for the better.  These helicopter nurses mean business.  When they came into the room the St. Anthony’s crew scattered like cockroaches do when you flip on a light.  The lead transport nurse was on the phone while overlooking things and the other two nurses were taking vitals. The IV already was bad, in one stick they got a good one in. They found out quickly that Jackson’s blood pressure was dangerously low.  The lead transport nurse was asking who was in charge at St. Anthony’s, but that lady was nowhere to be found.  She asked one of the other nurses, what did you guys do for his blood pressure?  The nurse just looked at her with a blank stare and replied his pressure was fine when we took it as though it was the transport nurse who caused it to drop. The transport nurse asked for the paper work, the vitals, everything you have, and the nurse handed her X-ray film from the failed and successful intubation. The lead transport nurse just looked at this nurse with such disappointment and re-asked for his vitals.  She then stopped for a second to talk to us, explaining the transport, what medication they are giving him to help his blood pressure, explaining to us that it appears he is having a seizure, and that they want to get him to Children’s as soon as possible, also apologizing for everything that is going on, but reassuring us she will take care of everything.   I could feel Sara sighing in relief and I wanted to, but I was internally freaking out…I felt so helpless.  Someone walked by and asked if we needed a taxi or something to drive us to Children’s, we said no, we would have someone come up.  While the transport nurses were working on stabilizing Jackson, one of the St. Anthony’s nurses was bitching about her job to the EMT and this situation mocking the transport nurse, we were standing right there while she was doing this.  Then another St. Anthony’s person came by on a phone telling us she called for an ambulance to take us to Children’s. WHAT!  Um no thanks, we have a ride on the way.  “Oh, well they told me you needed a ride” she said as she stormed off…like it was our fault for their miscommunication.   What idiots…in the meantime they still haven’t given the transport nurses any of the information they asked.   Transport is done and ready to go.  Sara’s mom arrives to take us to Children’s just before they cart Jackson off to the helicopter.  I couldn’t be happier that we were leaving this hospital however I wasn’t happy that my son was going to be riding in a helicopter without one of us onboard.

To be continued…