Day 6 – an end in sight?
Throughout the night last night, I kept track of any time I noticed Ryan sucking his thumb, yawning, moving, or any other out of the ordinary thing other than just laying there and sleeping. I noted the time and the event. I gave that to the nurse this morning when I woke up to shower. She sat in with Ryan so I could go down and get a coffee before Ryan even woke up.
Ryan slept until 1030 this morning!! Unreal.
The nurse went ahead and did his vitals, flushed his IV, and changed his diaper. He is such a flirt!! But nurse Anne loved it and flirted right back. I don’t plan on telling her husband…
Ryan ate breakfast and the we played a bunch on the floor. So much that I moved crazy with pressure and pulled my lower back. Oye…I sure wish I was in my own bed tonight rather than dreaming of it. A bed on this island would be FABULOUS! Even with the sun shining. I’d sleep right through it… And I’ll dream about it tonight.
Dr. H was in today – after a few button presses.
What I wrote down last night correlated at times with spikes and slowing. Mostly during breathing changes – yawns, sighs, along with movement at the same time. He seems to have more activity in the breathing changes at night rather than the eye stares during the day. All of the activity is on the left side – some as long as 30 seconds – and no changes/spikes/slowing on the right within the last 24 hours. That’s GREAT NEWS about the right side! I asked him if I should be concerned about any lack of breathing all together during sleep – and he didn’t seem concerned at this point. We will make a followup appointment in 3-4 weeks and once Ryan has had 3 full doses of his medication, we can be discharged.
With that, the tech came in and redid some of the leads today. They worry about sores on the head and skin, since Ryan had sores last year. They worry it’s possible again this year if the leads are on his head in the same spot for too long.
My take on this information – we’re way ahead of last year when we were here for two weeks compared to having the information we have after a handful of days this year. I’m not sure that is a good thing. In addition, my take on this is Ryan’s seizure activity is progressing as he’s showing more spikes, slowing, etc with just one mL lower than his current dose of medication. Last year, we had to take him off of ALL medication to see some information and not even what we’re seeing now. This answers my question of him being taken off of all meds all together, and him growing out of these seizures right now…Not happening.
So Ryan and I played a LOT on the floor today – he spent a lot of time in the highchair so we could read, eat, color, and watch TV all at the same time – well some of it at the same time. By 330, we had a room full of visitors! My mom was here and I ran downstairs to grab something to eat – on my way down, I ran into Tim and the kids – including my Brit!! The kids went up to see Ryan while Tim and I grabbed something for me to eat. When we were back in the room, Aunt Beth showed up!! The party was complete and incredible – parties that aren’t planned are the best!
My mom suggested I get out so Tim and 2 of the 3 kids came with. Timmy wanted to stay back with Aunt Beth and my mom to play with Ryan.
We had a great time at a nearby mall – just walking around and getting out in the real world today for more than 20 minutes was nice. I had some silliness, laughs, tears and hugs. I really needed it, enjoyed it, and am appreciative for each of those that have visited us and asked about us as they’re supporting in their own way. So THANK YOU!
I also have to add: I apologize if I’ve come across as short or rude when/if you have asked how it’s going – but I’m updating the blog at the end of each day for that purpose – so I don’t have to repeat myself to everyone who asks.
Once Ryan has his medication in the morning (8am) we’ll be looking at getting the heck outta dodge. We’ll visit with the neuro and ask the questions we have before we leave. It could take a few hours as paperwork to get people out of hospitals for some reason takes forever, but we have to see the tech’s to get Ryan unhooked and all of the leads off his cute head.
I’m one step closer to insanity from this hospitalization. (How many steps are there total…? I swear I’m almost there…)
Thank you again for your concern, thoughts and prayers for all of us. They’re SO appreciated!!