We’ve been here before…and I don’t like it!
It’s been a long day – so I’m going to make this short and sweet – maybe – but prepare for a heavy picture post and descriptions to do this blogs work for me.Ryan had loose stools all weekend – looser on Saturday than Sunday, but I didn’t really think anything of it. I woke up this morning to not only a full diaper of #2 but him gargling in his sleep – followed by vomit and seizure – after seizure – after seizure … I called 911 and I insisted after the morning we had – and the extent of seizures, we would be taken to Children’s which is 35-45 minutes away. Ryan was really lethargic all the way up to the hospital, including the first hour of being at the ER.
Our Neurologist came pretty quick, and spent a good length of time with us – despite his pager going off a few times during the time he was in with us. We had a few “what to do next” because of what got us where we were – and after discussing things with Ryan’s dad, we decided the best for Ryan would be for him to be admitted and start long term monitoring. The reason we chose that option – if Ryan is coming down with some bug, and the past has shown he seizures when he is sick, we want that to be shown on an EEG so they can capture those! We want to know where the seizures are coming from as MTS is not looking like a very fun thing we’ll be dealing with in Ryan’s life time.
Two years ago – 3 weeks before Ryan’s 2nd birthday, we were here for the surgery – the Chiari – within two weeks after the surgery, he was crawling up on his hands and knees, and cruising around furniture – instead of just army crawling.
A year ago, a month before Ryan’s 4th brithday – we were here for long term monitoring – as we were looking at doing surgery and getting rid of the part of his brain that was causing the seizures. After two weeks, we didn’t get any answers other than 3 medications at one time were NOT a good combo for Ryan. We switched the medication up and he has been doing good developmentally compared to the other meds. This is the goal. Not to NOT have seizures (although that would be ideal) but for Ryan to have a better life developmentally.
This year, 2 weeks before Ryan’s 5th birthday – we’re being admitted for another long term monitoring.
Once we had a room to go to on the EMU, we headed up and got settled in. Ryan was in great spirits and was happy to have his grandma with him. The love he has for my mom is awesome…and the way she can calm him with just the sound of her voice is just amazing!! Onto the pictures to tell the rest of the days events.
Today – Ryan did a LOT of dry heaving this morning, a lot of sleeping after we arrived at the hospital, a lot of snacking and playing with Grandma this afternoon, a lot of vomiting after dinner, and a lot of flirting with his nurses tonight…it’s after 10pm and he’s still awake. It’s been a long day and this mama is TIRED!
Once he was all cleaned up and perky again – we did some skyping with Britney – caught up with what was going on for the next few days, and said our good nights and loves yous. We sure miss her! She makes our hearts full, happy, and giggle lots!!
Please forgive the short post – it’s been a long day and when things like this happen, it takes some time for it to sink in, research to be done, and I’m spending all of my time being with my boy… And have I mentioned I’m tired?
Please keep praying for my boy. Pray the doctors find answers that will help Ryan. For my strength and for peace…for all of us!
Thank you for being here and keeping up to date with us. We appreciate you!
So I sent this update and just when I thought I could go to sleep myself….hah!!
At 11pm I woke up with Ryan crying. After trying to sooth him from across the room, I realized there was a nurse messing with him. We discussed starting fluids when Ryan was sleeping so he wouldn’t pull the IV out as he has before. (Many times!) So when I woke up, from him crying it was the nurse trying to start the fluid for the night.
The IV that was started in the ambulance worked for the period it needed to…however, it was done and had lasted its time. Since transport was up on our floor, Shawna, our nurse, grabbed one of the transport team to start a new IV in Ryans ankle/foot. If he can see it, he’ll pull it and get it out – we do feet so he won’t pull it as we can cover it easiest!
Normally, because Ryan has small rolling veins, it takes a few pricks for them to get it started. It took one time. Just once!!! He’s still hydrated to the point a vein can be found, poled, pricked, and an IV started!! Great news.
So we got the IV started, we cuddled a bit – a good hour at least – and were out sleeping again by 1/130am.
Let’s hope this is a good stay with lots of answers…good answers!