Hopefully you read yesterday’s post, Putting My Son Back Together, since that would give the background on why I was so worried about Ryan having a comfortable night. The great news is, Ryan did. His pulse was in the 60’s throughout, which is a good indicator of his comfort level. Actually, this made me feel better about two things. The first was the baclofen reduction from two days ago. The second reason was my fear that his urinary tract infection was coming back and it was making him antsy. Well, after last night I’m relieved.
It’s a good thing Ryan is doing well because he has a busy day ahead. I had him up earlier than normal to help our chances of getting everything in today. It starts off with ninety minutes in the HBOT chamber (where he currently is). When he gets out is when it really gets crazy. Dr. Hinkle (a.k.a. the nicest man in the world) is coming to examine Ryan’s eyes. Sadly, they have been red and slightly irritated (the eyes, not Dr. Hinkle) over the past 48 hours, so it will be worth knowing if Ryan suffered any minor abrasions. Then it’s an hour under the infrared helmet, while getting passive exercise on the ActivCycle. From there it’s over to the exercise table for a stretch and full range-of-motion. After getting him loose, Ryan will spend another ninety minutes on the RT300 FES cycle (60 minutes on the legs and 30 minutes on the arms).
Once these are completed it should be around eleven in the morning. Since Ryan will have worked so hard I’ll give him some time to get his strength back, but will need to use this time efficiently. This is when I’ll use his new chest percussion vest and get some food and water into him. Then it’s off to the standing frame with him for an hour or two, depending on how he’s holding up.
Hopefully I can I must get this all done before five o’clock in the afternoon, because he needs to be back in the HBOT by then for another ninety minute session. It’s imperative that I have him back in his chair before 6:30 because I need at least twenty minutes to get him all wired-up with EEG electrodes for the (twice weekly) neuro-feedback session with IBRF at seven o’clock. These sessions last about an hour, so we should have him in the shower sometime around 8:30 and completely settled in bed about one hour later.
This will wrap-up his sixteen hour day. I’ll still have at least another two hours to put in to get caught up and ready for tomorrow.
We hope Ryan is and will stay comfortable. I adore all of you!
Ryan’s care from a dedicated and all loving father would exhaust me after one day. May Ryan and his family be blessed in a special way during this Holy Week and even more so during the Easter Tridium.I offer my prayers for Ryan’s healing and continued strength for his family who lovingly care for the son and brother. Ken, you make real the unconditional love that we as Christians are called to practice. You fall sometimes on your way but you get right back up again which we see so clearly in Christ on His way of his cross. Blessed Easter!
It’s more that I’m helped up by other and not so much on my own.
I sit in awe and watch my friend
Discuss his day from beginning to end
The meds, the chamber, the appointments, the bed
Visions of prescriptions dance in my head
I cannot fathom the tiring days
Restless sleep and eyes a glaze
Where nightmares are nothing really new
And pleasant dreams are somewhat few
But I know in my heart that the day will come
When my friends will be celebrating with their daughter and son
Where God awakens the boy from his sleep
Friends & family will gather, and in happiness, weep.
I love it.
Feeling good about the 4/16 reduction. Mom’s birthday so you have an angle on your shoulders. Also, since you are the man of all seasons, Easter is this Sunday! Hope the Easter Bunny hops by with something good! Kiss Ry for me!
Ken,An exhausting schedule to say the least,but we’re all so thankful Ryan has a Mom and Dad like you and Sue!!!Just wish we could physically help you with our man Ryan. So happy Ryan had a good night and hope a good day too. Stay strong and keep yourself healthy:) Hope eyes are okay and NO infections , Always here praying for you all …..Love Gail
Our Lord is blessing you and keeping you strong, Ken, as He is all of us so that we can help in any way, no matter how small it is. <3
Thinking of you — all day, every day — praying for you to stay physically and mentally strong. Enclosing you a big hug (KEN). This is the best I can do for now. Still here, still praying (SHSP) and Never Going Away (NGA). Love
God Bless you. What an inspriration. I am always praying for Ryan, and for you Ken.
I’m exhausted already just reading your agenda, but if anyone can accomplish all those tasks in one day it’s you! Just give a shout out if you need any assistance though… (And I’m so glad that Ryan had such a good night 🙂
SO my friends always tellm me that I exhaust them when I tell them my schedule or when they read it, well now I know what they mean. Man you have exhausted me and it’s only 7am. Ryan is one lucky young man to have such and amazing father and family who go above and beyond to make sure you are ALWAYS getting the best. I shall call you He Man! You are such an inspiration to all of us and thank you for your continued daily updates. Have an awesome day and don’t forget to take periodic deep breaths!
My,my, you do keep a busy schedule! Good news about no reaction to the baclofen reduction! I hope the work with the IBRF work is helpful. Catch ya later!