So it's been a while. It's not that I don't have things to write, it's more of I don't know where to start.
I'll go back a couple weeks.
About three weeks ago we noticed Aaron's abdomen was getting larger. We knew he couldn't be gaining weight as his appetite had gone down quite a bit. After talking with our nurse it was decided that he had developed Ascites. This is the accumulation of fluids as the liver gives out and isn't able to process everything anymore. That Monday he went in for a paracentesis where they use an ultrasound to see where the fluid is versus where the organs are and use a needle to go in and drain the fluid. They took off four liters of fluid (two soda bottles for those that need a visual). There was more than that there but they only take a maximum of 4 liters the first time to see how the body handles it. He seemed to be doing ok on the trip home. When we got home he made it up to the font door but was too weak to get up the front step and fell doing a belly flop on the front step. He came down on his knee, abdomen, chest and hit his head. With no strength to get up and me unable to lift him we had to call the paramedics. So we had the big fire truck pull up and the three guys were able to get him back up and into the house where he could get in his hospital bed. As a couple hours went by he said his port was starting to hut more and more. He finally pulled back the dressing to find that the needle had completely bent and come out of his chest all except for one little hook at the end of the needle. He he hadn't been getting any pain meds for a couple hours. The on-call nurse for hospice came out and put a new needle in but at this point we had to play catch up with the meds. He sat with the kitchen timer set for 20 minutes so he could hit his button to get additional meds as often as possible.The next few days were rough. He slept a lot as the drain had not only taken out fluid, but electrolytes and proteins. That Friday the nurse raised the dose of his pain meds.
We didn't make it to church Sunday. Honestly, after the week before, I was terrified to take him out of the house. I didn't want him to fall again. Especially out in public, where we'd still have to get him home and hope he could get up the front steps without another fall. It's not that he's clumsy, but so strength or stamina left.
Monday the nurse came out to hook up a new bag of pain meds. Aaron was still hurting pretty bad so they raised the dose again. Everything was pretty low key for a couple days till Thursday morning.
Aaron decided to sleep in our bed for the first time in a quite a while. Having a pillow top mattress the sides of the bed don't have a lot of support. Aaron rolled over to get get up and go to the bathroom and slid off the edge. He wasn't all the way to the ground but had no strength left and I wasn't able to help him up so he went down to the ground. We tried using the walker, the shower chair, anything that he could use to get up but it wasn't happening. So at 5:30 in the morning we called the paramedics and they came out to get him up. They sat him in a chair to rest for a bit before he tried to do anything else, made sure he wasn't hurt and left. Aaron sat in the chair for a good 25 minutes and was feeling like he had gotten some strength back. Seeing as he still hadn't gone to the bathroom, which was the whole point of getting up in the first place he used the walker and moved from the chair to the bathroom. When he got up from the toilet he was too weak and fell again, with his ribs landing across the toilet seat, ripping it off the toilet, the corner of the counter in his arm pit, his chest and port hitting the counter as he was wedged between the counter and the toilet and his foot going through the wall behind him. I hear him yell and fall from outside the door and went running. There was no way I could get him up myself and he was in such an awkward position that he couldn't get himself up so at about 6:15 I called the paramedics again. The same three guys came out. They were awesome. Very nice, not perturbed at all, even realized they recognized our last name and knew Aaron's mom from when she worked at the city. They got him into a more comfortable position and while he was resting before the next move talked about how great Jan was. When Aaron had fell on the front step we had given the guys our cancer sucks bracelets. Two of the same guys were there now and told us how the third guy had also made the connection of Aaron and Jan and at his wedding that following weekend he, and his bride, wore the bracelets in the wedding. It was a wonderful feeling for Aaron and I that someone would be so supportive of someone they hardly knew to wear the bracelets at their wedding.
The guys eventually got Aaron up and in his bed. They talked a bit more. One of the guys said that when he had come back from his tour of duty in Afghanistan that Jan had been the first person to give him a hug and say welcome back and how much that had meant to him. After they left, and with Aaron settled, pills taken and him dozing off I also went back to bed for about an hour. When I woke up I heard beeping in the living room. It was Aaron's pain pump saying it was out of meds. Of course it couldn't have been worse timing as Aaron had just fallen twice, bruising everything and possibly breaking ribs, and needed the pain meds!! Aaron said the alarm had been going off for about 45 minutes which meant it had been that long since he had had anything. I called hospice. His nurse was scheduled to come out that day anyway, just had to bump up the time. We didn't have an extra bag of meds at the house so she got on the phone with the pharmacy and both the meds and the nurse showed up in about 25 minutes. She got him all hooked up again and once again raised the dose of meds he would get both continuously and when he hit the button for an extra dose. She also changed the program so he could hit the button for an extra dose from every 20 minutes to every 10 minutes.We spent the next couple hours with the kitchen timer again playing catch up trying to get his pain under control.
Since the three falls last week, he is getting weaker pretty steadily. He's gone from taking a shower by himself, to using a shower chair and after today's shower will be doing sponge type baths with my help. He is still able to get up to the bathroom using the walker, but hospice brought in the portable commode for us to have access to when he needs it.
He has an appointment to have more fluids drained off on Tuesday as things have built back up again and are causing more pressure and discomfort.
As for me, I went to my doctor a couple weeks ago and was put on an additional medication to help with anxiety. So I am now on three medications and at about a 14 month wait for my turn at a hearing for disability. While the new med is helping, I still have times of panic.
Thank you all who have been praying for us and have been able to help financially. As of now we are going to be able to pay rent through November. If things continue as they have been, this should provide for me till I receive Aaron's life insurance check which will hopefully get me through till my hearing. Of course that's contingent on NOTHING unexpected happening and we all know how that usually goes.
Our friend has been working on a story about Aaron for quite some time now and it will be in this Sundays Register Guard paper in the Oregon Life section. Please check it out. It's months in the making. Thank you Serena and Ivar for working so hard and spending the time with us to put this together.
Thank you for taking the time to read this and catch up. Please continue to pray for us as I know from this point out thing will not get easier.
