I don't like coming up with a title for each post...

Jared getting dialysis. Marcus wants his chair right up next to the bed. :)❤️

Jared talking to Jeff Oliver (his boss) this morning.

10/25/14

Jared is #1 on the list. There was even an offer for a liver last night, but the organ wasn't healthy. Jared is doing good and they are continuing to get him as healthy and stable as possible for surgery. He is doing dialysis again today. They say once he gets his new liver his kidneys will begin to recover. They are pretty angry right now.

We met a fellow Alpha that received his transplant earlier this year. Paul Owen came to visit us. It was good to meet him, he is kind and it was encouraging to talk to someone that's been through it all and is doing great. 

Marcus got here a few min. ago. Jared was really happy to see him. Marcus looked like he was having a hard time so we went for a walk so I could talk to him. He said, "I'm about to cry with Joy. I didn't think this was going to happen for a while." He is so sweet and caring. The other kids should be here soon to see Jared. He hasn't seen them since we got here.

Jared loves visitors so if anyone wants to come see him text me and  let me know who you are :) and I'll give you his room number.  801-921-3676

Wasn't expecting this quite yet...

We are at the hsopital again. We got here yesterday (thrusday) at 5am. Jared had a fever and was in a lot of pain. He was sick enough that they admitted him. He's got an infection in his belly again, his blood pressure keeps dropping, he is dehydrated, and his hematocrit has been really low. He has received 3 units of blood so far. Yesterday his MELD score came back at 31 which is great, but the Dr. said 35 would be better. Jared has blood type O which is in high demand so unfortunately that makes his wait time longer.

So... This morning the Dr. came in and said his MELD jumped up to 40!!! I think we were all pretty shocked to hear that. I wasn't expecting this quit yet... they say he could receive offers for a new liver this weekend. There are a lot of factors though, they have to make sure the organ is a good match, fit and healthy, so it could be 1 to 2 weeks before he get his transplant. His kidneys are shutting down, that is what spiked his MELD.  They are doing dialysis for his angry kidneys :) and working to get him stable enough for surgery. Pretty sure he/we won't be going home anytime soon...

Its crazy his MELD jumped 14 points in two days.
I'll try to keep updating when I can.

It's getting to the really hard part.

The years of waiting have been miserable to say the least. As time goes on, with every new change I find myself saying, Wow, this is the worst yet.)

Last month Jared had to have an impacted wisdom tooth removed. There was a marked decline in his health and confusion afterward. After the surgery he was so confused he could not even carry on a conversation. We ended up in the ER twice that weekend. The pain medication he was taking for his tooth surgery was causing him a lot of confusion. His liver can't process it, so of course it was going into the bloodstream and getting to his brain. After the second visit to the ER the doctors finally said, "absolutely no more pain meds." They upped his lactulose to try to clear it out of his system. He became dehydrated from that and we ended up at the ER again. For the next couple of weeks his confusion was still really bad. We are managing it a bit better now. We're trying to get the right dose of the lactulose to keep him comfortable but also to help him be able to think clearly. His Dr. says it's always a balancing act trying to find the right dosage for each patient. Each day is different, some are better than others. Sometimes he can think okay and other times are really difficult. Days, times and numbers are really hard for him to keep straight. He has difficulty using his phone and the remote control and even having conversations on the days when it's a little worse.

Jared has finally gone on an LOA and will not be going back to work until after transplant. We are trying to figure things out with his work and looking into what needs to be done so his benefits can continue when his short-term disability runs out. We may have to apply for Social Security disability if we aren't able to work things out with his employer. He will receive full pay and benefits through February 24, 2015. We're hoping to be able to continue it past then, but it's all a waiting game to see if we can get him approved for long-term disability in time.

His MELD score is 26 still. I think we are past the point of him going back downward. I think he's going to continue to progress from here. His doctor even said he thinks that he could end up hospitalized by the end of this year. By that he means he will be hospitalized until he gets his transplant. He did also say that if things continue to progress the way they have been over the last several months, he thinks Jared will be transplanted within a year. Each day is harder and I hope soon we will be able to see the light at the end of the tunnel. One thing that has been helping me is something my mom said, and I keep reminding myself, "One day this will all just be a bad memory." That may seem negative but to me it just means that this will not go on forever and we will be able to look back one day and say, "That really sucked. I'm glad it's over."

10-13-14

Got Labs done today. MELD is 26. The coordinator called me shortly after and said Jared's hematocrit is really low so he has to have a blood transfusion tomorrow. He is not doing so good lately. His HE is is crazy. He is so confused all the time. He can't even work his phone or the TV remote. He has been in an LOA from work for a couple weeks. He's supposed to return on the 20th. I'm afraid he may not be able to go back. We go to the transplant center tomorrow for a clinic appointment and I'm hoping they will be able to help him feel and think better.