The urine culture came back negative. This is positive. Nothing grew out. In one way this is good news. In another, it now makes me wonder what caused the blood in the urine even more. If not a UTI, then what? I guess it might be one of those things we never know and I’m okay with that. Kinda.
The 3T-MRI continues to be a thorn in our side. Johns Hopkins will not perform it since Ryan has a baclofen pump, even though the pump manufacturer specifically details it is safe in the operator’s manual. It’s their hospital’s protocol. So, we are left with now getting a lesser resolution MRI. IBRF said they can still work with this inferior imaging. I hope so.
Next subject. Eyes. I received a wonderful suggestion via the “Contact Me” forum that increased home humidity helps. I’ve been running a room humidifier in his bedroom, but he spends the majority of the day in the main living areas. These spaces are open and too large for a small unit. I looked into this and see that the “whole house” units are not too expensive (under $200).
I went online to buy one yesterday and thought I might ask (before I do) if anyone has one they are not using. I’m not looking for the style that is inline with the furnace. Just a simple one that I can plug-in, dump water in each morning, and will humidify one-level of our home (roughly 1,800 square feet). I’m told the minimum output should be over 9 gallons/day, so this is what I’m basing this on. Anyhow, contact me if you can help.
Like every WVU basketball game, we find a way to watch it with Ryan. If not on television, then on ESPN3.com. Rarely do we have to get creative to find live coverage. What a good win! A nail-biter up to the last minute. Last night’s game was big for many reasons. It determined seeding in the Big East tournament. It plays into the NCAA March Madness. It was against a ranked opponent. But, what made it the most special is Kari was at the game. We watched for her, but with no luck. There were several games were we clearly saw Ryan. How did he always get mid-court?
The Colangelis says
Glad to check in and see Ryan is doing OK. I the blood is the urine is behind him and that he has a restful weekend, Think about him and pray for him every day.
Rally for Ryan says
I just submitted the order for a 13 gallon whole house humidifier. Looks like it will be delivered within a week.
Sam Durham says
Just research what you need to do to keep this sterile Ken (I know you will). Humidifiers can easily grow stuff they aren’t supposed to. <3 RKD
sally ellis says
I’m glad to hear the urine cultures were negative. I think the humidifier is a great idea, it just makes sense. I also agree that Hopkins should probably be doing the MRI. Of course you want the best image possible. Still here.
Jill in Morgantown says
Just wanted to let you know about a website called “mrisafety.com” It has a list of implants and devices that are MRI compatible. A lot of implants and devices are only safe up to a 1.5 T magnetic field, although more are becoming safe up to a 3 T. Probably a stupid question, because I know how conscientious you are, but did you check the field strength safety limits on the pump. It should have it in the literature from the manufacturer….if not you can call them and get the info. If it says it’s safe to a 3T magnetic field, I’d be questioning why Hopkins can’t do it.
Good thoughts, Jill. I’m wondering whether a discussion with someone in the hospital might be helpful — someone who might be willing to help make this happen. This is too important not to have the best MRI available.
We have a whole house humidifier on our furnance..it is soo worth it..great for many things…nose bleeds, good for hardwood floors and leather furniture, no more shocking each other when we walk by..I’m sure in this area we could find a good local company who would install one for a good cause:-)
Jo Hobbs says
Wow! Great idea! Who wants to tackle this one? I can make calls, but I am limited with telephone numbers of Ashburn or Leesburg businesses that do this kind of work. Wouldn’t it be great if a company would donate some of all of this expense? !! Could anyone around the Ashburn area get an estimate? Here for you, Divineys
Cheryl Onderchain says
I have also found it helps with nosebleeds!
Im glad to see that everything was ok.
Good Morning Everyone… 🙂
We are very relieved to hear that for today, and this very moment we are living in that Ryan is doing well. Since someone had forwarded me the Washington Post article I have been praying & following the blog each and every day and throughout my day I often think of how Ryan is feeling and what motions the family is going through to assist him. As I mentioned in one of my prior replies that my son too has a scar similar to Ryans and also was kicked in the temple. He was diagnosed with Kernans Notch Syndrome…mortality was uncertain…a hematoma had pressed against the the brain which in turn created pressure on the brain stem. Very few patients recover with the capacity to function on their own after sustaining such an injury. James did survive…he is living proof of the miracles which can occur. I too did a daily blog on his myspace page that is until he came home…then I was alone helping to do the same things I used to when he was an infant…and then there was no more time for blogging. In James situation all of his bodily functions have been affected to some degree or another. I long to see him run and jump again. And it is for this reason that James becomes very depressed that this permanent damage has been bestowed upon him via the hands & feet of another. With TBI many afflictions can come about as a result. One of the most severe is the bipolar….Severe bipolar coupled with TBI and the physical limitations put upon him bring about a daily combination for which we struggle to keep him motivated & finding the will to greet another day. He has been suicidal several times and acts of rage and anger consume him sometimes. The world has changed for him. Finding yourself disabled at age 19, trying to wander and wade through the course of life & living as we once knew it exists no longer. I have forwarded Ryans story on to my son in hopes that he may become more grateful and feel more blessed each new day that he awakes to…somedays he wakes up smiling and other days…not. It is hard to find doctors who aren’t just channeling you through their normal cycle without taking care and understanding into each patients set of circumstances. Insurances don’t offer much help in the way of rehabilitation and finding a doctor or counselor who really cares is like finding a needle in a haystack. Unlike your family James’ attackers were never identified, therefore a huge black hole of ugly poison runs through James veins. Enough of me rambling. Your family has been tasked by a higher being with the challenge of your life time. Why some are chosen to be faced with such survival, fighting for your life situatons and your family members life and not others is what I often still ponder. The circle of love, faith and hope that surrounds Ryan is truly a blessing for him…I love you guys and I carry each one of you with me in thought & spirit throughout my days.
Is the blog still online? I think we’d all be interested in reading it. I’m sorry to hear that your son is still struggling, but I’m also glad to hear that he has his life back, albeit altered.
Cheryl Onderchain says
Glad to hear the “positive” news on the “negative” results.
We looked into those humidifiers when Justin was a baby – he used to get the croup all the time and the doc suggested it. I think we ended up going with a couple of the smaller types for a couple of rooms because the larger ones took up too much space in our old house. Hopefully someone can come through with one they have already.
I hope you and Ryan have a quiet, uneventful day my friend. Sorry I haven’t been on to comment much, super duper crazy running a million miles a minute with life as usual ; )
Jo Hobbs says
Like you, Ken, I am wondering wondering… …what — where — why? Maybe nothing, but if something is going on, time will tell.
Yes, humidy is a big plus with Dry Eye Syndrome — I can attest to that! The room size adds lots of moisture, but I don’t know about the “whole house” kind. And as I said the room size must be filled and cleaned often — one more job that must be done by someone (you?)! My husband is so good at this chore, wish I could send him up!! LOL Still here.