It felt like forever, but we finally left Reston Hospital just before seven o’clock yesterday evening. I had Ryan comfortably in his chair about an half-hour later and let him enjoy sitting-up for a few hours. Although he did sit occassionally while in the hospital, it was not for very long and not as upright as I like. We put him to bed around eleven and he had a good night.
The first thing I need to comment on is the concrete project. It worked wonderfully! Thank goodness this was in place. the EMTs were able to whisk him to the ambulance without causing any additional discomfort. We certainly would have found ourselves in a fix with the ground being saturated from rain. Our thanks to everyone who made this happen! For those who resisted… well, maybe now the reality of our situation might soften your heart.
We let Ryan sleep in an extra hour this morning but, once up, got him right back into his routine. He’s already completed his session in the HBOT chamber and is currently on the ActivCycle getting his legs mobilized. From here, it’s over to the exercise table and standing frame.
As for us, the work begins. We need to resolve several issues. First, what’s causing the recurring urinary tract infections? Second, why was he iron deficient and anemic? Third, why did that bone break from range-of-motion? What is his bone density? Is his body not picking-up calcium? What changes need to be made to his diet to balance the competing iron and calcium absorption?
It’s back to the drawing board with, well, EVERYTHING!
The Colangelis says
Interesting comment on the calcium (or lack of it). Good luck on determining how to test for any deficiency and the cause. I have full confidence you will find the way and be a master at it in the process. It’s what you do.
Drug and supplement efficiency is tricky. It’s not enough to provide it, it must also be absorbed by the body. Gains from one seem to inhibit others.
sally ellis says
Glad Ryan is home again. I know nothing about most of this stuff but I do know that I get a Dexa scan done every year to check out my bone density. Ryan has had this right? Have a good night.
He did. We’re scheduling another.
Have you noticed an increase in tone as the baclofen dosage has decreased?
How much Vitamin D is Ryan on? Alicia takes 2000iu every day. They should do a bone density test on Ryan as well. Have they checked his alkaline phosphate level to see if he developed osteomalacia which happens when someone doesn’t get their 15 minutes of sunshine a day. Hope this helps.
Yep, 2,000 IU daily. Metabolic panel is great.
Gail Doyle says
Ken, So happy Ryan is home and back to his normal routine. Hoping source of infections is found soon.
So glad everything is finished outside ,maybe you’ll be able to use soon……They say 60 tomorrow and you’re a little bit warmer. Have a calm day. Tell Ryan I said hello. Always here Love gail
Glad that Ryan is home. I am sure he is more comfortable. I continue to pray for Ryan’s healing.
Glad you are back home and do not understand why a doctor could not give you some reason as to why the bone broke, especially if you were given the OK to resume his daily routines. I totally understand back to the drawing board. I know the two of you will continue to provide the best care available to Ryan and you have. Don’t waste your precious thoughts on blaming yourself… 1. not valid 2. counter productive 3. counter intuitive 4. takes away from research time. Praying and caring.
I agree, maybe this is too aggressive therapy. It’s difficult when the patient cannot communicate with the therapist. I have been in PT many times and it can be painful and actually take a lot out of someone. If he is constantly worked too hard his body will be exhausted to repair other issues that he may be having.
The only way to determine this is to push him near his limits. Otherwise, he will suffer from more as a lack thereof. No one can make that call, it’s all instinct and knowing the patient intimately.
Did you ever manage to get an appointment with a urologist?
No. We are scheduling one.
Happy to hear that you are back in the comforts of home. Let the tests begin! After two broken bones, it looks to me like his bones may be too thin for whatever reason, and can’t tolerate therapy (stretching, pulling, pushing). Knowing you, I am sure you will find out for sure. As the saying goes, hang in there! Always here with love and prayer.
I ask only one thing – please do not beat yourself up over this. I know you will. I’ve seen it happen in the past, and I understand why it happens, but you are doing the very best you can for Ryan, and you are doing a wonderful job. Sue and Kari and you are the reasons why Ryan is as healthy as he is – if not for you three, well, I seriously doubt that Ryan would still be alive. So please, do not beat yourself up over this. Yes, you can be mad as h*ll at those no named worthless etc etc jerks who did this, I know it just makes me angrier with them, but please please please do not blame yourself. Please do not say, I missed this or that, I should have done this better, I could have done that more… Ryan is in the best condition possible because of you.
So glad to hear that Ryan is home, he and your family are in our prayers. Does he take any type of acid reducer? Some prevent calcium absorption – and it caused anemia in me – just a thought.
I am so happy to hear you guys made it home yesterday. Everyday I wake up in anticipation to read about Ryan and your family. Ken you are a Rock as is your wife and daughter. Thank you for caring enough to keep us, the public informed. My kids who range in ages from 11-2 know about Ryan and we all pray for him daily. Hope you have an amazing day and you get answers soon!