What a way to start the son-of-a-bitchin’ week! I open my e-mail to find lab results from urine we sent out for culture last week. Ryan has a urinary tract infection. Again! This is a strain not covered by the low-dosage of antibiotic we started him on after his last UTI. Also, it’s a bacteria that is new to him and is a particularly nasty one. So, Ryan will go back on a heavy-duty antibiotic for another fourteen days. He will begin taking it this morning.
Then one week after he completes the antibiotic his urine needs cultured again. No messing around here, we must be absolutely certain the infection is eradicated. I must tell you, this one has me a bit worried. There just aren’t many antibiotics that are left that it hasn’t built-up a resistance against. On top of this, Ryan might personally have even less as a result of the quantities of antibiotics we needed to pump through his system over the past year. What a way to kick off the week.
What we have here is the ole’ “complications from brain injury” expression. I hear it all the time. Usually when a person dies. I suppose it sounds sexier to say it this way. I guess saying a urinary tract infection doesn’t have the same impact or pizzaz. It sounds better than “complications from a vicious beating”, or “complications from poor parenting”, or “complications from unrestrained aggression”, or “The result of complete human failure”.
Yes, it is much sexier because it is so vague. It allows the reader to conjure up their own reason, which would hardly be a UTI. Am I right?
I know this firsthand because early on I assumed it meant a seizure or a catostraphic glitch in the regulatory system. A UTI never even crossed my mind. Not until, that is, I flat-out asked a doctor (when Ryan was at Kessler) about a patient who passed and the obituary attributed it to — you guessed it — complications from brain injury. He tells me it was from a UTI. He tells me that (or pneumonia) are almost always responsible. He must have noticed I was puzzled and continued explaining. You see, he tells me, the chronic or recurring bacterial infections are treated until the point where antibiotics have no effect.
I lowered my head into my hands and heaved. Looking up, I saw the doctor did the same.
Alicia use to get UTI’s until we quit using a foley catheter. Now she uses a diaper during the day and nothing but a pad at night (to avoid diaper rash) Have you considered stop using a condom cath or foley? Unless the bag is cleaned daily and the catheter changed daily it increases the risk of UTI’s. I know it is more work without the bag but it is worth it.
Ken, you’d mentioned getting Ryan on a low dose maintenance antibiotic to prevent UTIs. A member of our family suffered through Kidney Reflux from age 4-12 years and was put on Furadantin daily for the entire time. They were waiting to see if the ureters and flap grew enough to prevent any UTIs/scarring until puberty, when surgery correction would be necessary. The Furadantin protected enough that suregery was not needed in the end, and the person suffered no side effects from it. I’m not sure it would protect Ryan with all different types of the UTIs, but might cut out a lot of them. Something like that might be worth looking into.
We did start him on low dose Macro-BID (but are suspending until Bactrim is done). I’ll ask about Furadantin.
Hoping the antibiotics will take care of this quickly. Sending good thoughts and prayers and SHSP
Nancy Tawney says
Good grief this really sucks! I am a nurse and see the chronic uti’s from TBI’s all the time. It seems as if every thing you are doing is right. Just cannot figure out the missing link that keeps causing this. Still here still praying! Also will keep thinking about these uti’s
Ok, I gotta ask… please tell me what came back in the culture? I can believe what you tell me about infections and dying because a dear friend did exactly that in the hospital but I have a hard time digesting this happening with Ryan at home and the excellent care he is getting. When Jonathan had MRSA because they inserted it into his brain at the same time they were putting in his skull prosthesis (which was then removed when he had pus pouring out of his head, and we never had another one put in) they ended up putting him on Zyvox which is incredibly expensive (a vial of 10 pills is $4,000). Can they not put him on something intravenously? We brought Jonathan home from the hospital with IV antibiotics and administered them ourselves three times a day. I may be behind the curve here and please forgive me and pacify me if I am, but Ryan belongs to all of us and I just need the information. There has got to be some way to get rid of this once and for all, especially since you are doing everything to keep it from happening.
This is the most frustrating thing (and in many ways fantastic)… he never gets the same strain back-to-back. He get one strain, then another, then another, then another, and back to one he had early on. IV antibiotics are an option, by I’d like to reserve these as a last resort.
Hello! I’m sorry to hear about Ryan’s recent UTI. My heart goes out to you and I know that he is in the best of hands being taken care of by you and your family. Have you all tried probiotics for Ryan to help keep the UTI’s away? I don’t want to see as though I am suggesting something you may not have thought of but I know some docs aren’t very supportive when it comes to natural meds. Knowing how much you research his care, you may have already looked into something like this. My sister was born medically and physically handicapped and did deal a lot with things of this sort and this is one thing she did benefit from. Best wishes to you, Ryan and your family!
Yes, he is on a steady course of probiotics. We kick it up even further when taking antibiotics.
Pittsburgh Here says
I couldn’t agree more. You DON’T deserve this. You DON’T deserve the emotional roller coaster ride your family has been forced to endure.
Hugs from across the miles~
Gail Doyle says
Ken, Hoping that dam UTI will respond to medicine.Here, praying for all to be well..Like Carla said ,you sure don’t deserve this Always here love Gail
REMINDER TO TEAM DIVINEY!! Ruby Tuesdays in Ashburn is sponsoring a fundraiser Monday/Tuesday/Wednesday this week!! — a portion of meal receipts will go to fund IBRF treatment for Ryan. You will need to bring with you a fundraiser flyer so that Ryan’s account can be credited.
You’ve seen the video and know how hard Ryan is working to get better. Let’s help keep the momentum going!! Take a look at Ryan’s Wish List as well as the upcoming fundraising events. Think about creating an event yourself — all help is deeply appreciated!!
Paula, where can I get a fundraiser flyer for Ruby Tuesday’s?
It’s on the FaceBook Page.
Crap. I’m not on Facebook.
I just joined so that I could get the flyer!
My prayers continue for Ryans healing. Lets think positive. The anti-biotic will work.
Ken, I’m checking this out with my Integrative Medicine doctor. Somewhere, somehow there is an answer that could help Ryan as well as others. We’ve missed something — too much acid in the diet, or too little; too much carbohydrate, or too little — this could be diet related or vitamin — or none of the above.
Ryan is so healthy, and yes, I watched the video (won’t say how many times). He is simply a picture of good health! Next thing we know, instead of saying, “Wake up, Ryan,” you’ll be saying, “Saddle up, Ryan, we’re going on a trail ride.” Visualize it, dream it, think about it, pray about it, Ken and All, as I am.
Speaking of dreams — last night I dreamed that we converted the Chick Wagon into a Chuck Wagon. Doesn’t this sound like a plan? LOL
Think about how much you are loved today, Divineys, because we sure are thinking about you! Love and prayers always.
In my dream it was the Chick Wagon, not Chick Magnet. Stewart has kindly offered to make chili for the dawgs! I suppose nest, he’ll be making sauerkraut, just like in our hippy days! He makes awesome Bread and Butter Pickles! 🙂
Ken, I am sad/angry/upset about this too. You’re right, most people don’t think of a UTI as being something so potentially threatening. I am praying today with all my heart that whatever antibiotic is administered gets rid of the bacteria quickly. Asking all believers to do the same…our boy needs us.
Sending you love, hugs, prayers, and the knowledge that we’re all still here, lifting you up in our hearts and keeping you in our prayers and on our minds.
Carla Liberty says
Thinking of and praying for Ryan, and for all of you. Praying for wisdom of the doctors to properly treat this infection. You do not deserve this.
Andrea- Thomas' mom says
First let me say that yesterday’s post brought tears of joy- wow! Incredible progress!
As for UTI- Thomas battles them as well. We Use a 60ml syringe to completely empty his hypotonic bladder and if signs of infection, irrigate bladder many times a day with saline as well.