We didn’t have the best day yesterday. Kramer is a mystery and continues to be.
When we came to the ER on Tuesday we were assessed and quickly moved on to Lacrosse. We started with a different team of doctors but then on Thursday we got out old team back. We can’t say enough good things about Doctor Leuer. He’s got the best bedside manor. He talks to both of us and is VERY thorough with explanations. I love him.
The initial thought on this was to do a broncoscopy and see what was in the lungs. There has been such a problem deciphering what on the chest CT scan in cancer and what is pneumonia. Doing a “bronc” would help determine that. Well the powers that be can’t just “decide” that. Pulmonary and Oncology have to weigh in all of that.
Pulmonary said “sure”….Oncology said “ok”…our doctors said wait. How would recovery be for him after the broncosocopy? uGH. Well being Kramer is on oxygen, that complicates things. He’d likely need to be on a respirator for a couple days if they do that. UGH. UGH. UGH.
So the plan changed a little. The question now became “Did Kramer swallow something the ‘wrong’ way and that caused the pneumonia?” That brought in the speech pathologist to check Kramer’s swallowing. Then that brought this….
because the testing was inconclusive.
I had not heard of this test…a videofluoroscopy. Apparently Kramer goes to x-ray and they have him swallow some “bips”. Then they x-ray him to see how the swallowing went.
The thought is if he is swallowing “wrong” bit of food are getting to his lungs and causing an infection.
If they figure out that this is what happened they can prevent it from happening again…AND they will assume that this is what is causing the problems he is currently having and treat him with a different antibiotic.
All of the “what ifs” and “maybes” got me down a little today. I’ll admit it wasn’t the best day. I happened to be in the cafeteria for lunch and ended up seeing Mary Jo, the blog reader that works here in the library. She was so sweet and listened to me whine. She was the person I needed to see.
In the afternoon my brother Jule and his wife Wendy came for a visit. What a pick me up! Family is so great. Talking about the this and thats of our kids and forgetting about the cancer was great for Roger and I both. We so appreciate the visit.
Then later in the day I was back in the cafeteria for supper. Who do I see? Mary Jo again. She had been upstairs visiting Kramer. Then she came to the cafeteria to find me. It was perfect….just the pick me up I needed. Mary Jo had been to Starbucks and got me a drink and brought me a book.
That all truly put a smile on my face. I’ve said many times before on the blog that I always feel bad that I don’t know all of you like you know the happenings of my life. I love that I got to see a little piece of Mary Jo. I learned that she’s lived in many cities throughout her life. I learned that she came from a big family. We laughed over what was “ok” as we were kids and isn’t okay nowadays. It was the break I needed from today.
I can’t thank people enough for being the pick me up when I’m down. For how annoying the day started out, it sure ended up being a good day. More tomorrow….
Jo,
The not knowing and waiting are the absolute worst. But you are in the place you are meant to be. This is just part of the big plan. Hang in there. Take those little breaks when you get them. Wish there was something more I could do. But you are in my prayers.
Love, hugs and prayers coming your way.
I’m so sorry you and Kramer are going through all of this. I’m praying the testing comes to some conclusions and the doctors are able to know what’s wrong and how to treat it.
All the uncertainty must be so frustrating. Sending you patience and wisdom as you search for answers. And little moments of encouragement through friends, family and kind hearted folks who cross your path.
Continuing you and your family in my prayers.
Big thank you to Maryjo for being there for you and Kramer, its got to be so boring just waiting for answers for the both of you. Yea for friendships! Hope they get some answers and he can get back home to his chair.
Waiting is hard. Not knowing is hard. Your journey has been long. Praying for answers and guidance for the Dr.s. But until then allow yourself some down days or hours. I know people will be sent to listen to you and to bring a sense of normal back into your life. Your family is not alone in this journey. Jo take care of yourself. Hug sent from a far.
Jo,
You are very blessed to have so many caring people in your lives during this ‘trying’ journey. For that you can be thankful. Good wishes in getting the lung mystery sorted out. I hope it’s an easy fix when they discover it. ‘NO more cancer.’ That’s the new mantra! You are in my prayers.
-Jean
❤
Thanks to Mary Jo who lives close enough to you to be at the hospital to be a shoulder to cry on and then to be a big pick me up later in the day, since this Mary Jo lives on the east coast and can’t give you a hug in person, You are all in my prayers!
I hope you get some answers today, Jo, as far as what could be causing the pneumonia. There are a lot of factors to consider for sure. One thing I feel I should mention, because it happened to my dad, is that he developed what they said was pneumonia after being on some high-power antibiotics for an infection. He was in the hospital for a couple weeks and all the while I’m asking the doctors if the “big gun” antibiotics he’d been on may have had anything to do with him developing pneumonia and breathing problems. They all told me no and seemed to dismiss it. Well, lo and behold, he ended up having to go to a larger trauma hospital after he tanked again, and at the new hospital, they were like, yes, it could be and probably was related to one of the antibiotics! Specifically, Daptomycin, which had a known, but rare, side effect for causing pneumonitis and ARDS. He had also developed a rash by this time on his trunk, but that took weeks to develop. It seemed like his local medical team were completely oblivious to that as being a possible factor. Anyway, not that that may have anything whatsoever to do with your specific situation, but I just wanted to put that out there for whatever it’s worth. I wish all the best to you and Roger and the treatment team. I hope he is doing better soon!
I agree with others… not knowing and waiting is hard. And yes! It’s ok to feel down and vent and get your thoughts out in the open. And Mary Jo and family showing up?… that has God’s fingerprints all over it! Sending love and prayers!
It is the courage you have of posting your feelings that I admire the most…hang in there
I heard that if there is a God…it is not us..xoxo
You are such a strong, strong lady to be able to get through all this, and you hubby too is a strong man. It is hard I know, but KEEP THE FAITH, all will be good soon. I’m happy you have so many people pulling for you.
Admiring your strength from afar. #KramerStrong!
Yay!! Friends who listen AND bring coffee!!! :o))
I’m glad that your day ended better than it began.
Continued prayers for Kramer and you and also the doctors as they try to determine the best course of treatment for Kramer.
What a day for you & Kramer! I admire how strong you are, Jo! Keeping you in my prayers & sending hugs!
Your days sure have been through a lot of ups and downs, mountain tops and valleys, So glad family and friends have been there for you.
Continued prayers for you and your family.
The unknown is one of the hardest things to deal with I think. Hope there is a resolution soon. So glad your day turned around for you. Hugs!!!