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…