after hitting into the 5000+ words range decided to continue the saga in yet another blog.
Mar 1 sounds like things are narrowed to his stomach or upper gi tract as possible issues of bleeding that they may have nicked something. So carl has agreed to scoping. will happen later today
Today was an awesome day in the work dept! I got to photograph a baby for a young family that just a year ago I shared in a moment of sadness when their baby became an angel. Was a pleasant surprise when I went into her room and saw them
no updates really from today for Carl. He went thru a couple scoping procedures. Looks like they discovered an ulcer in the stomach area due to the leak I am guessing from reading report will find out more when I get results from other exam done. Nothing posted yet on it. He did eat a yogurt and drank a bottle of cranberry juice today so that is good!! Now I am off to bed another work day tomorrow 🙂
Mar 2 argh bili continues to climb and now as a result of surgery they are thinking he might have hep B wtf is all I can say!! Running tests for that today and should have results tomorrow. Guess that is another possibility that could be causing his lack of recovery.
Went to a gender party for a customer to find out she is having twin girls later this year. Super excited and can’t wait to meet and photograph them!!
Mar 4 Talking to Carl and he is sounding better at least 🙂 Bili is up again, some of his other levels where they are still low they seem to be leveling out a bit. He feels he will be there at least another week. Has agreed to doing feeding tube so that will probably happen tomorrow. For me it is nails day so off to Dezz house to take care of them 🙂 Time to get my St. Pattys on 🙂
Tried changing Panda’s name to Damnit she even shook on the name change, Carl said she is under age so it isn’t binding! He had the feeding tube placed in this morning so conversation was short as it was painful for him to talk.
Mar 5 Labs are looking a lil better today but seen it twice before so will wait and see what tomorrow looks like before getting excited. He is going for a walk soon, he did get spray for his throat that he says last for hours and helps a ton. I am off to work on this beautiful day the sun it out 🙂 Make it a great one!!
Mar 7 Carl seems okay this morning, sounds better this morning than yesterday. Beginning to wonder just how high can the bili number go?? Still no anticipated date to come home 😦 but on some levels with all that is going on I would rather he stay where he is getting cared for. At this point thinking I had more time with him while he was driving wrecker. We have never been apart this long! Off to a shoot this morning and return other calls that I didn’t get ahold of people yesterday have a good one.
Mar 8 Okay I can now update on Carl now that he and family know….looks like he will get to come back to MT hopefully by Tuesday. At this time the current plan is he will go to a step down unit at one of the hospitals (no offense but hoping BC) Dr. has noticed a trend in his labs when he has company vs no company and the next days labs and feels he would benefit being close to home where we can visit. I will totally accept if he can just at least be close enough to visit even if he can’t come home yet!!
His labs still need to be closely monitored as they are still doing weird things. But having him near enough to visit and it will be soooo much easier to schedule sessions now and get caught up on stuff too.
Mar 9 YESSSSSSSSSS!!!!!! Doing happy dance!!!!! Three days bili numbers: 39.9, 39.1 and drumroll please…today 37.6 🙂 Maybe news of him coming back to MT helped!
Mar 12 Getting frustrated apparently if you are a medicaid patient there isn’t many openings at skilled nursing facilities! Upside looks like since his dr. is not recommending car travel home they will pay for flighting him home. Waiting to hear from a few more possible places and if nothing else he will come home on hospice care. Downsides…dogs and kids mean no peace and quiet or healing time. I am going to see if I can talk to anyone concerning his VA benefits and see if that opens more door possibles for him. Hoping to have him in MT within the next couple days 🙂
Mar 13 Laundry, fill orders, finish cleaning in the event Carl comes home, hope to hear from dr. today as I have questions of concern on his labs, and Carl saying last night he wanted the feeding tube out he thinks he can handle drinking 5 or so Boosts a day to get in his calories. And really I haven’t seen any improvement on his lab work since they put the feeding tube in so if he is miserable with it in maybe it should come out. OH and get rid of this darned head cold its slowing me down!!!
Mar 15 got a pre warning prep call. Dr. still hopeful but wanted to prepare me things just aren’t getting better 😦
Mar 16 Sunrise today was gorgeous, talked to carl for a couple minutes before he fell asleep while we were talking. Hope to talk to him later 🙂 Off to work then visit with sis in Bridger had lunch got call from dr. It was my warning call things weren’t getting better. Was told I shouldn’t bring the kids they needed all my attn focused on them and Carl.
I drove all night got there 6 a.m. definitely exhausted. He was sleeping so peacefully I didn’t dare wake him knowing the journey he had been on. The stench in the room was gut wrenching and made me sooo sick to my stomach.
Mar 17 please pray top specialist here at the hospital for liver transplant came by and he wants to move him back to ICU and do dialysis. Carls request before dialysis begins. Thanks to nurse Gayle for taking it for us 🙂 I told him the kids wanted to see him so he said take a picture and send to them he didn’t want them to see him like this.
all that rush to get him to icu floor this morning and dialysis still hasn’t begun this evening. The machine has made its way so that is something I suppose. He is just resting.
Mar 18 labs looking a little improved this morning, possibly do dialysis again today get more fluid off.
I am looking forward to the time when I can laugh and smile at the same time…Watching someone you love suffer is sometimes worse than suffering yourself. I am feeling rather mentally and emotionally fragile and drained right now, I feel like I just don’t know anything I use to know, but for him I will continue to hold on and help him fight.
no dialysis today. He is still running a temp from all that and his labs look a little better than before it so they are doing an easier on his system format of removing fluid. So they are working on that system right now. Mostly he sleeps
GORGEOUS day out. Glad the Palliative Dr. kicked me out so to speak. She encouraged me to leave take a walk…outside and so glad I did. So many blooms I didn’t notice when I came in.
Off to attempt sleep. Hopefully the clot issue is resolved in Carls tube and we can start the machines back up. He is finally sleeping more peacefully than he has all day, fever came down a touch still high but not as bad. They also changed his pain meds maybe he is more comfortable now than on the other. Night all and thanks for the prayers and well wishes.
Mar 19 everytime we turn around alarms are going off. I asked for a sign that come Monday do we continue to Friday. When is enough enough….which alarm is it now. From kinked hose, air in line, blood clot at the hose entrance to his neck, and finally discovered his feeding tube was blocked. All this sporadically thru the night and rapidly the next morning before our next meeting on where do we go from here…. All this after telling me and the nurse just this morning laughing because at the foot of his bed there were donkeys being chased by burrows. I gave him quiet the look and he said just trust me. The nurse asked so you looking forward to getting out there and riding them. He looked at her like she was stupid and said no silly you don’t ride them you drive them. He fell asleep at this point. Later this morning Kidney specialists came in curious why dialysis was started and said no it wasn’t going to help it is only weakening him. Carl didn’t respond to them coming in. Right before I left for the meeting he came too and seemed coherent so I asked him what now. His labs are only getting worse his kidneys and liver are shutting down and he has been in and out of coma all week. his only words were “Never Give Up”. At this precise moment I thought he meant the fight against cancer and keeping him alive. Over the weeks since I have come to realize he didn’t want me to give up living. This evening he was moved to comfort care on the 11th floor of the hospital.
Thank you Ashlie for taking pics of our vow renewal
Mar 20 Wee hours of the morning our good friend Kristina from Rifle made it. Like everyone else has been waiting for me to say I need you….I believed for so long he was going to get better. That isn’t the case.
Renewing our vows was totally amazing despite the situation in which its urgency to be done is. Having that celtic dress, losing more weight, the cake etc none of it mattered all that mattered was this is what Carl was wanting to do for awhile now and in my humanly vein ideas of what I wanted no longer mattered only that the man I love and I got to redo our commitment to each other. We have photos and video 🙂 Great to have the kids here and Carl even didn’t fight us and nodded in his approval they were in the room. Looking at photos taken so far his eyes were open much of the ceremony 🙂
This moment like many others during these weeks will be forever more with me.
During the night Carl was under much agitation from pain we are guessing. He watched Shawshank Redemption and a Zombie flick with us. We spent the night in the room with him…all of us. Mostly no machines but there was his iv pump and when time it would alarm and these sounds bothered Benjamin greatly and he along with Kelda asked to leave the next day and return to Montana. Said they could not watch. Inger wanted to remain with me.
Mar 21 Inger and I walk Kelda and Benjamin to the parking lot for their ride. Around noon After long weeks and esp the past long grueling days even a rough night and a rough patch earlier this morning Carl has been resting peacefully and comfortably like a baby almost if you will the past 4 hours. I am afraid to even go hold his hand as I don’t want to disturb him. I even got a couple hours nap. I now know this is when he slipped into his full coma and to never awake again.
Mar 22 Sun is up gorgeous day here in Denver. Been up since 4 listening to music with Carl. He hasn’t really awakened since he went to sleep yesterday round noon. About 6:30 this morning his breathing started changing. Nothing they can give him again until dr. gets here. I really want to go get a coffee but afraid to leave. Inger the stinker has managed a full nights sleep and still snoozing away! As I watch my beloved slip away I get news reports of pending anytime births from friends of ours babies and in some awesome way I am seeing the miracles abound and can’t wait to hold these little ones in my arms. I can’t iterate enough cherish what you have while you have it you simply don’t know what the next moment or chapter will bring.
Though he isn’t responsive any longer and much of me feels he started leaving us around 2:30 yesterday …maybe not just a feeling. Inger and I both had weird things happen same time. Today he has slept, increased pain meds, nail color appears to be changing, had to have suctioning done of the secretions build up. On our walk today Inger and I were talking about how we truly are ready now, we feel it is time to move to that next chapter what ever it is this anxiety of when is hard. Also while on walk this lady was walking by commenting how much energy Inger had and if she would share, Inger in her sweet way said she didn’t think she was sparing any today. I was taking photos with my cellphone and the lady asked if we wanted one together 🙂 Was a nice gesture we took her up on it. Off to nap been up since 4 and he is peaceful right now!
Carl seems to be running a fever tonight:( Just trying to keep him comfortable. I took a 3hr nap today out of no where guessing I was/am tired. Today I realized nobody realizes how delicate a life can be until it’s taken or in process. I mean we all know but sitting here going thru this puts a whole new meaning on the realization. 1 of the hardest lessons in life is letting go. Whether it’s guilt, anger, love, loss, etc. Change is never easy, you fight to hold on, and you fight to let go and right now I feel Carl is fighting letting go. He had such strong desire for life and that aches me to know he wants to stay regardless of his failing body. The kids and I have freed him knowing he will never be far from us and always ALWAYS in our hearts no matter what the future will bring. I am sure I will have many days ahead of pain and heartache, things will come that will remind me of him. I know the next path isn’t going to be easy just as these weeks and hours have not been, but in time that too will heal. Never take what there is today for granted it may not be here tomorrow. Want to do something don’t put it off just do it.
Mar 23 I awaken this morning with anger that he is still limping along in his breathing and not a damn thing I can do about it. WHY?? We know his body has been shutting down on him first the liver then the kidneys there is no chance for him to come back from those things. If this was a pet the vet would suggest best option is to put them out of misery, give them a shot and let them go peacefully. But humans we can’t do that for. I will say it again weeks ago when I learned the end stages of liver process was I wished he had the strength to hold a gun and pull a trigger, THIS is NOT what he ever wanted he wanted a quick and to the point passing, not this lingering for days. Today is a week since I headed to be back here, today was what we had set as a deadline to stop any procedures if we weren’t seeing progress, but seeing nothing on Monday even I decided enough was enough I felt he had become a guinea pig so wanted him to be able to go w/o being poked and prodded like a pin cushion. All I gotta say is I am with him and John Wayne from the Shootist he had a shoot out and put himself in a position to make it happen that he died so he didn’t go thru the agonizing pain of the end stages of this awful disease. For my husband I pray he goes today. This morning I wake and he just seems to not be comfortable to me.
I was lucky to have found the one person that completes me, you are my best friend, my lover, my rock, my soul-my friend…my everything. I Love You Carl! You know it never felt like we spent much time or had many family photos and no we didn’t have many professionally done ones because of work schedule, but we have them all the same and we took stolen quick moments and we made the most of what we were given. I see that now looking thru pictures. By the way I was the one always home with the kids but there are WAY more photos of you than me and you were the one always away working. I am grateful for this and I will be making it a point to be in more pictures so the kids can say they have photo memories when my time comes.
12 p.m. LOL turned on TV and Ghost with Patrick Swayze is on and can’t help but laugh. Inger and I have decided we feel sorry for any mediums that he may come in contact with in the here after! Carl and I watched this movie a lot when dating and I can’t help but laugh I told him finally I get to tell him Dido first!!
4:45 I thought surely it would be today that is how I felt when waking up and seeing him look uncomfortable. maybe maybe not but I feel in my heart it will be by tomorrow. Dr.s thought it was going to be a few days ago I thought initially yesterday or today even but am thinking tomorrow. I mean really the guy has never done anything the easy way!! So we will spend these last hours whatever they are just loving him and grateful I can be here with him.
5:06 I look up from chatting with a long time friend from school and church Kristina… she was there the day we met and in a way there the day we should part ways via modern technology in instant messaging… as she typed away I watched my beloved take his final breaths. Inger sitting right at his side as we had just recently traded spots. She decided my trying to sleep in a chair was why I wasn’t getting comfy sleep. Said she was drawing so she would swap me awhile and let me lay down on the couch.
Good Night honey may my cowboy come to me in my dreams. I take comfort in knowing you aren’t in pain anymore but at the same time I hurt, I am sad and am in such pain from this great loss. You were my whole world and I got fortunate to have found you when I had just turned 18.
I bathed him before we left his room, They didn’t officially come in to call time of death until 5:23 on 3/23 either way you look at it his life was full of 6’s down to his final breath including me…my birthday is 6/6.
We went to a hotel that night after doing paperwork they whisk right in to take care of. He was only able to donate the cornea of his eyes. He was listed as a donor and that is the only way I had the strength to allow parts of his body to be removed.
The days that follow are a blur doubt I took many showers. I am sure if I go thru my timeline on FB I will see what all I did but for now I must stop reading it as I had forgotten all the condolences that flooded my page in the moments after he had passed. Someone else had posted for me…not sure who got the ball rolling but it went like hotcakes and everyone knew long before I mustered up to let everyone know the long painful journey was over…at least his part. Now mine and the kids continue as we learn to live with out him.
Now you have read the majority of the missing months. Some may be out of order as FB timeline isn’t perfect and I am completely with swollen eyes sitting here on the anniversary of our 2 months without him finally reliving those painful final weeks and days and hours leading up to that moment. It is now 4 a.m. on May 18th thinking I should attempt something called sleep.