Just weeks after coming off antibiotics to treat a particularly resistant urinary tract infection (UTI), Ryan has developed yet another UTI. Since last week I knew his body was trying to fight one off and he held it at bay for a while. But, last night his leukocytes (white blood cells) jumped from “trace” to “medium”. In the end, the UTI took hold and we are going down that all to familiar path of treatment. This is not good… not good at all.
As a precaution, we sent a urine sample to Dr. Rodriguez last Friday for culture. The results are pending, but there is a good chance they will be in today. Thank goodness we were ahead of this and should know the strain of bacteria exceedingly early. This is key for precise and quick resolution.
We’ve also ordered every conceivable panel of blood work. This will be drawn on Thursday.
I had every intention of making today’s post about his eye visit to Dr. Hinkle (and our first outing in the Chick Magnet), or about this past weekend with his sister and friends. I was hoping to give an update on tomorrow’s baclofen reduction and the upcoming sleep study we’ll be taking him to (probably this weekend). I’ll get to these at some point.
Meanwhile, it’s back to the drawing board to come up with a plan, or some sort of protocol, to end these infections once-and-for-all. My instincts are telling me to rethink everything. So, I’ll approach it from a completely different angle. My launching point will be to just let him urinate without any devices or systems to contain it’s flow (although I will use the moisture alarm sent to us from Ryan’s Wish List and a floor covering), and then completely clean him each time. Yes, this will be endless… and messy… and back-breaking. Then, as I get into it I’m sure I’ll figure out ways to become efficient (well, as much as possible).
- Baclofen Reduced. UTI Found. (ryansrally.org)
- UTI Cause Determined (ryansrally.org)
From my experience with incontinent patients who do not move their legs on their own when in bed we would prop a urinal. Put something like a diaper or soft cloth between the urinal and the legs so you don’t get a rub rash. Good luck, always thinking of you.
So many caring people offering advise, experience and kind thoughts. I too hope & pray that Ryan is UTI-free very soon. I wish you well too, Ken, as you struggle to find the answers that best help Ryan. Lots of hugs and prayers coming your way, today & everyday. SHSP, NGA!
sally ellis says
I agree, what a smart bunch you folks are. I’m sorry I have nothing to add that might help you diagnose Ryan’s infection. However please know that we are still here and thinking of you often.
Your post just reminded me of another suggestion for Ryan’s rash. It helps to have extra fluid intake in order to dilute the acidity, thus lessening any irritation.
Ann H Tearle says
Wow! Your supporters just blow me away with their insightful postings. You can do this–I continue my multiple daily prayers for you and Ryan. I intended to ask about the UTI and the rash–and here was your post. SH, SP, NGA. Annie
I would not try any herbal products or anything else, once you remove the catheter, the problem will subside from happening again. As one lady mentioned earlier, she speaks from experience as apparently she has someone she is caring for also, switch to depends. We did the same for our mom and the infections stopped.
Great advice, since even herbal remedies can have side effects, especially when used in conjunction with prescribed medications. They can counteract and/or interfere with the medication itself. Just because they’re natural does not mean they cannot do harm.
So many responses from caring people! Vicki sounds like she might have the ticket to no UTI’s. Thank you, Vicki, for recommending “knowthecause.” Good one!
As you research new ways to address this, please let us know what you need. If it’s more pads, Uricare or other supplies, please add it to your store or post it. Hugs!
My Dad has a suprapubic SPT indwelling catheter as a result of a bp issue. He has suffered through UTIs however we have great fully not had many reoccurrence once we limited him to wearing the night bag during the day as well. He goes in for monthly tube change by urologist nurse and we put a sterile new bag each week, and this has lessened the risk of infection somehow thank God. So Ryan may be a candidate for a SPT catheter procedure which is reversible when he recovers. I really like yr approach of trying a completely fresh approach and will pray fo the exact best solution for Ryan!! As the saying goes ..once we know better we can do better. Keep your faith and never give up. Expect miracles.
Vicky Scott says
We have been changing Jonathan for over 4 years now, during the day and multiple times during the night to keep him from having UTI’s. During this time, he has had one, and we have no idea how that happened but we were able to take care of it (and it was showing 4+ bacteria and WBC) using the D-mannose, 100% cranberry juice and lots of fluids. I know this is extra work. My husband, David, has changing him down to a science now. We spend extra funds on depends because they are the only ones that fit him, and the disposable pads but … (I hope the night time nurse does changes!)
I bet Ryan even will feel better soon!
Vicky Scott says
I also found a product on http://www.nutritiongeeks.com
called Himalaya UriCare that I have been using. It is an herbal supplement but clinically proven to stop urinary tract infections. It is spendy, but when you read about the product and the company and that it has been around since 1930, you might be impressed like I was.
Will look into after noon feeding.
Ken, if you want to give the UriCare a try, send me an email and I will order it for Ryan and have it shipped to your house.
I added it to Ryan’s Wish List this morning.
Vicky, Tell me about the 4+ measurement. How is this determined?
Vicky Scott says
This is the product I used.
They have all kinds of tests available.
Ken, I think you’re on the right track by rethinking everything. Along that line, is it possible that Ryan’s body has built up a resistance to antibiotics in combination with all of the other medications he’s on? Maybe you could check with the doctor and see if it’s possible/advisable to stop all except the absolutely necessary meds (and probiotics!)for a bit to give Ryan’s system time to regroup and get back on track?
Yes, I’ve been kicking around that idea too.
In your pondering, if you can think back to any changes/increases in either scripts or OTC (even such as cranberry, vitamins, etc) that took place a week or so before the rash outbreak too. It just seems like it could be all connected somehow. I was thinking back to days of dealing with diaper rashes, and remember it always leading back to a new food being introduced that caused more acidic urine. In that thought process, I just ran across this article about cranberry/uti and thought you might want to take a look.
Gail Doyle says
Ken ,So sorry for you both that this infection came back .I’m know you’re doing everything possible ,but there seems to be no easy way .Maybe between you and the Drs , there is something new to try .Praying you all come up with a solution. Hoping it’s not too painful for Ryan My thoughts are with you. Keep us posted when you can. “Life’ s a beach” sometimes. Give Ryan a hug for me ,please. Love Gail.
Gail Doyle says
Ken ,So sorry for you both that this infection came back .I’m know you’re doing everything possible ,but there seems to be no easy way .Maybe between you and the Drs , there is something new to try .Praying you all come up with a solution. Hoping it’s not too painful for Ryan My thoughts are with you. Keep us posted when you can. “Life’ s a beach” sometimes. Give Ryan a hug for me ,please. Love Gail
This is upsetting. I’m surprised the new system didn’t pan out the way we had all hoped it would.
What are your thoughts about consulting with a urologist for additional evalution?
Ken, I know how hard this is on you, and I know how angry/disappointed/sad you must be feeling. I’m so sorry this is happening, and it hurts deeply to know you, Ryan, Sue and Kari are suffering through these things.
If anyone is a code breaker, Ken, it’s you, and I know you will work this problem non stop til you find the answers you are seeking.
Ryan, you are so strong, tough, determined — such a brave and wonderful young man. We are all so proud of you, and you can count on us praying for you all day long and through the night. We are always thinking about you, and hoping you are having a good day.
Sending you both lots of love, hugs, and prayers. I pray this day will turn around for the better, Ken.
I’m so sorry that Ryan, and you, have to go through this again. Could it be that he is not fully empyting his bladder with each urination? Noticed this happening with my mom (who I care for and is proceeding through her end days) and the insertion of a catheter has removed this as an issue. I know you’d rather not go to something invasive (the condom cath is certainly the better option), but just trying to think of what could cause the recurrence of the UTIs.
We have tested this before, and he is emptying. Might be worth another try…
Sorry to hear this is happening again. There must be a solution to this, Ken. I was just reading about cranberries and cr. juice in “Get Balanced.” More cranberries? Seems to me that the alarm and/or Depends might be better. Prayers for a quick fix to this. Love, always here.
We give him so much cranberry, cranberry juice, and D-Mannos now.
Just as I thought! I suppose it doesn’t help some people, but who knows, it could be even worse without it. Prayers for this recurring infection to stop. Could you please ask the doctor about probiotics, since antibiotics kill the good bacteria also? Love
He is on probiotics, getting 3 capsules/day.
The solution is prevention. It is now recommended that alcohol-based cleaning agents be used on your hands and when cleaning patients to prevent CA-UTI. Also using sterile gloves and drapes during catheter placement is recommended. I know this is just more stuff that you may have to get, but it may help prevent future infections. Also, catheters with silver ion coatings assist in preventing infection.
Don’t know if more info is a help or an nuisance, but the CDC website has lots of info on CA-UTI. http://www.cdc.gov .
Still here and checking you blog every day