Let me first say that we love all the cards Ashley has been receiving. I think we’re close to about 100 or so now in the first day . Ashley said wow!!! she couldn’t believe it she was so happy!! Again thank you so much.
So this is Ashleys 6th day in ICU she is back in pain today do to the bull shit that happens all to much at hospitals. Someone miscommunicated something or dropped the ball again. I have argued with so many Dr.s that they think I’m an ass. I just know what Ashley needs more than they do and wont stand for second best. They just need to listen and do their job. There is nothing I hate more than telling them I told you so or why was this not done. Then the skate around the answer like a hockey player.
So what happened is they took Ashley off Ketamine way too fast and I argued that they were wrong to take her from 5-5 to 0 ketamine 5 Diluadid. So now a direct Result of that is Ashley being in pain and had to go back up to 10 mg and hours of Diluadid. I told them to drop the Diluadid first to help wing her off. They said they needed to get her off the ketamine first. This is only because we refuse an epidural. Therefore they can’t transfer us to the regular floor we have to stay in the ICU. And they seem adamant on getting us out of here. All of this did not make much sense to me since after talking to the anesthesiologist and Palliative lady for her pain management . Because we agreed we would not take her of ketamine 100%. This is why they don’t use this in the ICU not sure how to use it. Sure they have a protocol but it’s bullshit and does not work for ashley at all. What are the# based on I asked and they said Literature. I see its not on a 28 yr old girl that had been on 70 mg/hr. Then how do you know if your protocol even works on her or not? Their protocol says we have to move in increments of five which I don’t agree with one bit. Long story short now we are moving in whatever increments we want. :).
Don’t worry I will get to the bottom of who made the call to take Ashley off ketamine completely. Someone has to answer to me I love seeing them dance around the questions. I think I will also write a book on things that shouldn’t happen that do in the hospital.
So where we at tonight is Ashley’s at about 10 mg of Dilaudid and 20 mg of ketamine an hour and she is comfortable and in some pain. We might go up a little more on the ketamine and then start trying to wing her down on the Diluadid tomorrow…again not for sure might just hold off for a while though. Ashley’s output of urine has slowed down in about half or more. We are worried that there is something wrong Most likely her ureter stent Slightly plugged.
This has been my song thought this journey never quit never back down tell the cancer is gone!!!
http://m.youtube.com/watch?v=2MGVlpPKjcU&desktop_uri=%2Fwatch%3Fv%3D2MGVlpPKjcU
Cancer Kickin' Girl 
Tim I am so glad you are there to stand up for Ashley’s needs. Pain is such a drain on the system. Draining energy Ashley needs to fight.
Hang in there you two. Still praying.
Chris & Joe
glad to hear you are fighting for her (and winning)! my husband has been in the hospital for 2 weeks (pancan) and it is astounding the way these hospitals operate. best wishes for both of you, as a caregiver i know it’s a really tough job. i think my hubby is too young for this evil disease at 46, so i can’t even imagine going through it at your age. keep fighting!!
We thought Ashley was strong, but now her superman steps up to fight this PC. You are wonderful Tim. I know Ashley is proud to have you as her life ‘s partner. I will buy your books as soon as they hit the bookstores, they will be both good books. As for Ashley, I have a lot of cards to mail to her. Their may even a few cras cards for you, not a woman’s card. My husband hit the card store for me, lol. Hope Ashley gets rest tonight. Hugs and prayers to both of you. Praying, Sheron.
I’m not much of a country music lover,but if I kept hearing those lyrics in my head, they would give me strength.
I sure would be scared to have to guess around like you have to about doses of meds. It’s kind of a wilderness for everyone, I think.
When no one could help me get over my illness,,I was brave to lean on myself instead of doctors,but after that, I didn’t depend on the docs for THE answer, but I did take advantage of their knowledge.Sometimes I used them as tools,because I knew what was going on with my body more than they did, and they could help me with questions I had about the processes going on,and of course testing.
We’ll continue to send cards to cheer you all up and remind you of the real world outside the hospital. Stay loving
Hey…….Thanks for the update, Tim.
Glad you are able to be proactive with the doctors and question them. Some people, no matter how much they care for their loved ones, aren’t able to do that and it really is so necessary, especially with PC care. Every survivor is so different with what meds work for them and reactions to treatments, etc., because every PC case is different. You are a good advocate for Ashley!
Reading your post reminds me of one of my favorite scenes from Terms of Endearment. “Give my daughter the shot!!” I think it’s something we can all relate to once we have dealt with a loved one dealing with PC pain. It’s a short 30-second clip that I bet, even if you haven’t seen the “semi chick flick tear-jerker,” you could relate to =o)
Take care…….Kary
Hope Faith Courage Strength
OMG you two are amazing! Thank you for the continued updates Tim. Keep fighting the fight any way you know how.
So much love heading your way ash and Tim! Lindsay in Victoria bc canada
We had similiar issues when my brother in law was in the hospital (pc). The admitting nurse wrote down ALL his pain medications wrong and no Dr. would answer a page to get it straightend out. I have never been that mad or upset in my life. No one should have to be in that much pain. Keep being Ashley’s advocate and you are 100% correct that Ashley’s case doesn’t fit literature or protocol. Still lifting you both up in prayer daily.
Tim it is so fustrating when drs don’t listen to the patient or the family I know where your coming from. You are an amazing person and a wonderful husband. I pray for both you and Ashley that things turn soon. God Bless you both. xo Cathy
Tim I am so happy you are there to fight for Ashley. DO NOT give up. Dr’s have a tendancy to have a God complex, but they are not always right. You have been there for her and with her this entire journey and you have seen so much and learned a tremendous amount. I know you will continue to stand up for what is best for her. I praise God she has you!!!
Tim, thanks again for the updates, I’m sure that you have more than enough on your plate, so we really appreciate that you take the time to do this. Stay strong, and make sure that you take care of yourself also.
Ashley is so lucky to have you as an advocate. I can only imagine the butt kicking you are doing to make sure she is treated properly. Way to go!
I love that you dedicate songs at the end of your posts!! š
Thanks for the update and please send Ashley well wishes…thank goodness she has you to keep watch…I often think of those less fortunate in the hospital and, like you, understand what all goes on and what you have to stay on top of – unfortunately many do not have that. Don’t give up – keep fighting the good fight….you are both in our prayers!!! Please continue to keep us posted!
Tim I’m so happy you are standing and fighting for her, I have been there without someone like you and it has been a nightmare. I first want you to tell Ashley that I love her and am praying for her, we have not met but I truly love her and have been worried. She is so cute I am old enough to be her mom, if this was my daughter I just don’t know how I would make it and be so strong. You are so strong, surely God has many by your side to help in ways you may not see. Do keep going on as you are, write that book this should not happen! to this young woman and in pain it makes me so sad. I pray all will be well and wish you both the very best, stay strong she needs you. Best wishes,