Ryan achieved a remarkable milestone last week, but he continues to be afflicted with a chronic condition. One that seems impossible to resolve (but I’ll keep trying). On the “things to look forward to” list our family will all be together and a huge fundraising event is on tap to close out the week.
- Baclofen. This past Monday at 11:23 am Ryan completely stopped the baclofen infusion. It was the culmination of ten months of step-down dosages. Ryan tolerated each one well, including the last. If he continues to stay relaxed and comfortable then we’ll have the implanted pump removed in three to six months.
- MRI. Later this week Ryan will go out for more imaging to better identify the placement of his Celect IVC filter. There is concern that this filter, strictly placed to capture any blood clots from the legs that might form and break free from reaching the heart, is that it shifted and could puncture the inferior vena cava; the large vein that is just above the intersection of the leg veins. The thought is, if we can get the filter out then we’ll do it since his is no longer at much risk for clotting.
- UTI. We are having a hell of a time getting this latest urinary tract infection knocked-out. Home urine dips continue to show the presence of leukocytes and nitrites; a sure sign of infection. Beyond this, his urine has a foul odor that I recognize as the same bacteria. That’s right, I can actually identify the bacterial strain by it’s smell. What a gift… wee ha! Another urine culture went out yesterday to see if it’s the same bacteria or we’re dealing with something entirely different, but I don’t need that to know it’s the same. Results could be in as early as tomorrow.
- Kari. She comes home for summer recess from WVU today! I can’t wait. I’m planning on grilling-out a feast fit for a king (or Princess, in her case).
- Golf Event. One of the major fundraisers, the 2nd Annual Golf Tournament, is this upcoming Friday, hosted by the Greg Wells Team (RE/MAX). This event is huge in helping us offset the cost of Ryan’s care and treatment. Mr. Wells’ does this out of the goodness of his heart and because he was so touched by Ryan’s story. After the golfer’s come back to the Club House they, and anyone else who wants to attend, get treated with dinner and an auction. Let’s all hope for a sunny day!
- The Greg Wells Team Partners Up with Northern Virginia Real Estate Company to Host 2nd Annual Charity Golf Tournament (prweb.com)
Sending my love and prayers — if there is an answer to this UTI problem, you will find it, Ken. I like your idea about the infectious disease doctor, just to cover all the bases. I know this is extremely frustrating not to mention worrisome.
Kari coming home is truly something to celebrate!! She is in for a wonderful dining experience for sure. I am so glad school is finally out for her and you all have the whole summer ahead to enjoy.
Thinking of you all and praying for a good week. Will keep checking back for updates on UTI.
Love, hugs, prayers for this UTI to get out and stay out
The Colangelis says
Thank you for the update. Praying that we get the UTI knocked out.
I love you guys so much!!! 🙂 I know that Ryan will get through this~he has always been incredibly strong, and a UTI will not stop him!<3
Ah, yes Ken! Welcome to the world of an ICU nurse, we too can “smell” a certain bacteria. You can tell as soon as you walk into a unit or a patients room. Natures way of helping us get a jump on things.
Well, speaking of smells, I hope your grill sends off enticing aromas when your welcome home, welcome summer dinner is cooking when Kari and Sue get back. Hoping for great golfing weather Friday for the fundraiser.
A little chilly here today for an outside patio sit, but hoping its warmer in Ashburn.
Gail Doyle says
Ken,Sounds like things are pretty good ,except for stubborn UTI. Praying there is an answer and solution very soon.Hopefully filter is in right place and if not needed can be removed with no danger to Ryan. So glad Kari will be home for awhile..(Start grilling) Wishing for a huge success for golf tournament .
Being off baclofen and no bad effects is a little miracle in itself. Ken ,keep up the extraordinary work you are doing,Ryan will get better Say hello to Ryan love gail