I am combining two days because by the time we got home last night I was just to damn tired to do this. I am not doing much better tonight but I need to keep this going.
So on day 31 (yesterday) we headed to Center for Advanced Medicine in St Louis, MO at 1:30 pm. We got back home at about 10 pm. At 3:30 was Laurie’s preop assessment. They needed a urine sample and she could not do it. We were at preop for about 2 hours and they finally just gave us the stuff and told us to just give it to any nurse and they would know what to do with it. So by this time Laurie was hunger so we head across the street (me pushing one of their wheelchairs) and have dinner at Applebees. After that we head on over to the hospital to have her special MRI done (scheduled for 8 pm). We get there and register and sit and wait a bit. I then hear one of them talking to someone about Laurie’s IVC filter. A little bit later the lady takes us back to talk to us. She informs us that the MRI they will be doing is twice as strong as a regular MRI (it is a 3T MRI) and the IVC filter has not been tested for that strength. She informs us that the surgeon is going to make her have it anyway so we agree to it and she is told to let them know if anything doesn’t feel right. We are lucky and most of the people doing the MRI have done her previous ones and know us. We are so grateful that they let me sit beside her during it. I am able to put my hand on her leg and it helps to keep her calm. Before leaving we tried for the urine sample again and managed to get one – not the quite the midstream they wanted but she got it done.
So during this whole day Laurie’s right side weakness is getting worse. We are back to me having to help her in the bathroom, cut her food, help her up, etc. I am noticing that her right arm is kind of just hanging there. When we get home she can no longer manage the walker and we are back to using the transfer chair. So we got home and she went to bed and I stayed up and watched a movie to decompress. I ended up not taking my sleep meds because I have to be able to wake up and help her to the commode at night now as she can’t stand on her own. To be honest I am not sure what the positive was for the day other then getting another day together.
Day 32 has been one of those days where I can’t even remember things that well. Called the NO and let them know about the right side weakness getting worse, especially her right hand. To make it short there were many calls back and forth, they wanted me to take her to our primary care doc or an ER to see if she has clots in her right arm again. I said if they find them what do they do since she can’t have blood thinners. Was told they would call back – never heard back and I wasn’t going to take her to the ER till I knew the answer (told them that last time she had them they didn’t do anything and said they don’t worry about ones in the arm because they are so small). I am sure the ER would be thrilled with me telling them to look for clots but don’t treat them. Calls back and forth with surgeons office about the payment for the surgery and waiting on a return call from them too. Found out from the NO’s office that the surgery is scheduled for Monday and surgeon’s office said they will call tomorrow morning with all the details. Also the NO wants her to come in tomorrow to get the stuff started for the trial she will start after the surgery (that is how we found out it is on Monday) but never got back with a time for tomorrow. The preop office called and told me that Laurie’s potassium is low and they were letting our primary care doc know and they needed to get her on supplements or off of the lasix. Primary doc office called and they called in some kind of potassium meds (pharmacy didn’t have in stock so will be tomorrow) and to call every morning with fasting blood sugars (still working on that). Preop also told us she may have a UTI. Had to start a 5 day skin cleanse that the preop instructed us on. So I had to shower my wife before bed tonight – that was not easy – also had to wash the sheets and make sure we used clean towels and pj’s for her. I have to shower her every night before bed up to the night before surgery.
Laurie is so scared that she may not get back the use of her right side. She asked me if she would and I had to tell her I didn’t know. I didn’t know if the surgery would help that, make it worse, or no change at all. We also don’t know how her speech will end up. Right now she is having a lot of difficulty and I am figuring out how to help her without upsetting her. My mind is numb from all that is going on.
So positives for today have been son number two and grandson doing a sleepover, seeing youngest daughter. Hearing that the surgery is on Monday. Having another day together.
Thank you for walking with me.