DragonFaerie

I got it from amazon, also found it at walmart.

Thank you all so much. I'm still getting folks from across the country and the west coast either with condolances or we're coming. As far as my hair - I did all my hair in this: https://www.learnbemobile.com/blue-envy-splat-hair-dye.html. And yes his family will lose - as one of his friends said - we're having a FUNeral. 3 other women/friends now have dyed their hair - one glow in the dark red, one, who is blonde with teal ends and another now goes from black to blue ends.

Thank you. I've got several of his favorite foods planned, with a bunch of decor from his multiple jobs and everything from a yard jenga to use as the sign in board to darts, horseshoes and a ton of games. We will celebrate him. If his family won't come, they lose

Sorry for the delay everyone, but I've been having a very, very difficult time. Hubby's celebration of life is now scheduled for Aug 10th with games, food, margaritas and a chocolate fountain. We are truly going to celebrate his life. All of his family - parents, siblings and aunts/uncles had declinded to come - they have things like camping trips planned. That took me about 3 days of sobbing my eyes out. But I'm up, my animals are taken care of and I have clean clothes on. I also fulfilled a promise to him and dyed my hair - turns out it came out the same color as his car, his baby. Somehow that seems right

Just wanted everyone to know, they told us last week that the doctors box of tricks was empty. Attempting to drain fluid of of Mr. Dragon's lungs or doing more dialysis would send him into a cardiac arrest. I brought him home with hospice on this past Friday, May 31 with weeks according to the doctors. His parents and siblings arrived Friday night and saw him. Then he and I and a friend that helped me prep the room for him and get him settled in. We laughed and joked and watched tv. Then it was just he and I and we talked about so many things and it was wonderful. He passed to the Summerland Sunday, June 2nd, at 2:07 pm - a shock to us all.

Ok, um, I'm losing what day of the week it is lately. Averaging a good 10-11 hours a day at the hospital. So. No dialysis over the weekend. Scheduled for Monday. WBC is bouncing between 23,00-25,000 but no one is panicking. Blue dye test yesterday had NO DYE coming out in about 36 hours through the drains!!!! Ice Chips have been taken off his menu - trying to make absolutely sure nothing will interfere with the leak healing. He now scowls at Dr. Baggs who ordered that. Today, the bandage where the left drain comes out starting leaking. Dr. Baggs came in and checked it. He thinks there may be a clog in the drain. So we're just going to keep the bandage changed well. He tried to pull out any gunk in the drain and did get some. But for now, it's slow healing and go as we have. No surgery. No one wants surgery, so that's good. He was alert and interactive today. BP doing well, no fever, just exhausted. He and I have planned a lot of leg and arm work for next week. But I think it was good to have 2 days off from any scans and dialysis. Meanwhile I'm not sure which way is up anymore. Yawn.

Hubby Didn’t sleep last night much but color is better today. Breathing is easier. They’re going to discontinue the lactulose enema for the next couple of days since his ammonia levels are good right now. Dialysis will be tomorrow it looks like. Nephroligist is pleased with how his legs and body looks with the 3-4 liters of fluid that has been removed in the past two days. He has been moved again. it’s on the north side instead of the southside. it’s a bigger room. I have a fancy reclining chair and it supposed to be quieter. it also means no more heart monitor for him so that’s another thing off of him. first plan of the day will be a non-contrast CT scan mainly to make sure all the contrast from last week is gone and see what they can see with the scan. then there is a possibility he’ll come back up, radiology will read the scan discuss with the surgeons and then may try much later today to do a contrast CT scan. and the only concern is he threw up the blue dye yesterday. if we do do the contrast CT scan it’s going to be possibly this evening so not sure if we’ll get the report back tonight or in the morning and dialysis is scheduled for Friday wee! So basic ct scan was done. No old dye there which is good, We held off on doing the contrast dye scan until this weekend to give him a break. We'll talk with the change of surgeons tomorrow, Friday, which is Dr. B - dialysis is schedule for Friday. He was finally sleeping when I left and actually snoring so I'm really hoping that he gets some good, relaxing sleep tonight and feels better tomorrow. Dr. C, the surgeon on for the past 4 days, says if we do the scan and the leak is bigger, we may have to go back in, which everyone is like, um, NO!!! Hubby wants to know how long we can keep going at this rate of TPN if the leak hasn't healed anymore. It's super frustrating, so everyone concentrate on that leak closing and being completely healed preferably ASAP, so that we can move forward on everything.

Tuesday: Finally Got to meet with the new doctor this week one of the nephrologist and then got a call from another nephrologist that we’ve been seeing on and off for the past three weeks. she actually called me from her kids graduation and I’m guessing from the sounds of the background we’re talking maybe kindergarten. they’re doing dialysis right now. they’ve taken him off the long-term anabiotic the wbc still hovering at 22,000 they put him on a much lower anabiotic Cipro. The fluid around his lungs is simply because he’s getting more fluid in then out because he’s getting the TPN which is the protein and the lipids they’re all in an IV. Dialysis today is going to try to move fluid as well as clean the blood then they also are putting him on Lasix which we will hopefully help pull out more of the fluid. They did a chest and a stomach x-ray to verify there’s no obstruction in the stomach and just to see what condition the lungs were in from the fluid. the nephrologist on the phone said multiple times when he goes home, so everybody is looking positive he’s going to go home we just have to get that damn hole in his stomach healed so he could actually start drinking and moving. when I got here today a new PT person was working on him she had disconnected his pulse oximeter and hadn’t bothered to raise his oxygen level before attempting to get him up. he was panting so hard. when I realized that I hooked it back up and got his ass back lying down in bed while the PT person is like well you know you’re only hurting yourself if you’re not gonna do these exercises at which point I leaned over him and said I want you to take a big deep breath through your nose and let it out. he painted out what’s the number?we want the pulse ox to read 95 to 100 and an alarm goes off if the pulse ox if it drops below 90 he was at fucking 71. I asked the PT person how much did you raise the oxygen before you got him up. she didn’t. she continues to baby berate him while I get the nurse to raise the freaking oxygen. his oxygen actually dropped down the lowest to 67. in a couple minutes we at least got it up to 88 and eventually back up to 95. I can’t prove it but I think I did snarl at the new PT person. oh you better believe I will be having a conversation with somebody but it just reinforces the fact to me that I need to be here 24 seven so I have no idea what I’m going to do but keep sending that energy, the good thoughts that his kidneys are kicking into gear so he can pee and that damn hole heals so he can eat Also nephrologist on the phone asked me a few questions and said she’s really confused about why this whole thing started because based on how much alcohol he drank and the fact that he was only doing 400 mg twice a day of ibuprofen for for five days she does not think this is alcohol caused. Gee what I have I’ve been saying the whole time? They have also checked with infectious disease and they don’t think that they need to step in and do anything which is good but they’re still sort of all scratching their heads as to what caused this. Hospitalist does have him still on his lactulose once a day. he started saying well you know some liver patients need it and some don’t and I was like no , I can tell a major difference when he has it and when he doesnt so that puppy doesn’t go away and he was like oh OK you’re the one who sees him every day all the time. I swear can I get some sort of honorary degree by the time he’s well and at home? Had a private meeting with the nurse manager who took notes. he literally freaked out that Raymond got down to 67 on the pulse ox and the fact that the PT person disconnected him from the pulse ox and was not concerned at all with his oxygen level. he immediately went out of the meeting and headed straight for the physical therapy manager so that’s done. they’re starting the process of unhooking Raymond from dialysis along with shift change so it may be another hour or so I’ll start heading home to take more cold and cough meds but we’ll see Wednesday: Okay everyone, here we go. I came home last night after husband was unhooked from dialysis - they pulled 2 liters off fluid off. Came home, jugged cold medicine, fed cats and faceplanted into bed. Dragged myself up this morning and back to the hospital. Still sneezing and at times trying not to throw up, but I'm his nurse, cheerleader, protective knight and jester. Today was so busy, nothing bad, but everytime I pulled out the phone someone else came in. So yesterday I saw his hospitalist, Dr. Benedict, Today it's Dr. Lee and she told me tomorrow it will be someone new, sigh. Albumin, one of the liver tests is holding consistent and they are pleased. Ammonia level down to the 40's. WBC 23,000, BUT considering they took him off the super strong antibiotics and it DIDN'T jump up huge amounts has everyone thrilled!. No second thorocentisis at this time - they are going to go with more dialysis and the lasix as a safer route for now. Met Dr. Chu, the surgeon following him this week, Dr. Baggs will take over on Friday. Said they would try the blue dye test today in the NG tube, then another scan tomorrow Thursday. They - the surgeons are debating with radiology about whether they want to do a barium scan or another CT scan. The CT scan has the dye sit for 1.5 hours before making the scan, while the Barium is real time scan. Dr. Chu, she feels that from what they've seen is that perhaps the hole is healing from the inside out, so that there may be a barrier formed, which is why to start with the blue dye. They are also talking about removing one of the JP drains - the one that is gathering very little fluid, so it would be one less thing in him He got up today, with help to the port a potty and sat in the chair. the PT supervisor came today and worked with both leg and arm exercises with him in bed, since he had already been up. She was THRILLED, when I pulled out the new exercise bands I had ordered and ran through different exercises we can do with those to build more strength. She was impressed at his arm strength. Blue dye went in too fast via the NG tube and he puked it up. But we're still watching the JP drains to see if any blue comes out. Dialysis again today to pull off more fluid and clean. Surgeon told me that they can reschedule his scan if they need to so that they don't put him through dialysis and a scan on the same day. She agreed that's way to much to put him through Nephrologist and I discussed replacing the the neck dialysis port with a perma port, and he wants to wait to see what the next scan says. Sigh. Talked to his nurse Angela today -she had him yesterday from 7 am - 11 pm and said after a nap post dialysis - he was very talkative and coherent. Today we watched jeopardy and he was correctly guessing a lot of the answers. Off course one whole category was on dimes - so yea - LOL. She has him today until 11 pm as well. Then I overheard a section of the doctors/nurses/etc talking and going over his case outside the room. They said, we don't have any urine output in the record but the wife has documented multiple times, even amounts. One of the doctors said, if she said it, I'm going to believe her. She knows more about this case than anyone. So, um yea??!! LOL.

Sat was a rough day. Got to the hospital this morning on less than fumes and Raymond looked awful. He had a bad night and they were starting dialysis early. Met with the doctor and we talked about several things. Hemoglobin up - which is good. WBC about the same at 22,000. Both his amazing nurse, the doctor and the nurse manager's boss, all took one look at me and ordered me home and to bed adn not come back tonight. Managed an hour and a half, then another 3 hours. Working on laundry, cleaning the kitchen and eating food. Later a bath and more sleep and hoping to feel better tomorrow.

White blood cell count continues to drop and is down to 21,000. One of the surgeons who was in surgery with Raymond came by and ordered the contrast CT scan today to see if the hole is completely healed. so everybody send good energy and prayers that the hole is healed. if it’s healed they will take out the NG tube and he could have something to drink. No fever, BP and heartrate and oxygen levels are all good. other than being completely exhausted and weak he’s doing pretty damn good. talked last night to the nurse after dialysis was finished at about 11 pm and said he did fine during dialysis. talked to the kidney doctor today he said once the white blood cell count gets down a little bit lower they will put in a more permanent dialysis port which will be on his chest and he’ll be able to move his neck more which is a good thing. kidney doctor was very pleased to hear about the fact that he is starting to produce urine. Fell asleep in a folding chair so decided that meant it was time to come home and Raymond was good with that. home by 8:15. the nurse confirmed that yes there is something in the computer that says the scan was read but she doesn’t have access to tell us what it says. I’m guessing it’s nothing new and horrible or the surgeons would’ve been down to talk to us. I’m guessing because the hospitalist and the surgeon are probably gone for the day we won’t know until in the morning. I just really hope they don’t say there’s no change and we have to go another week of waiting.

Thursday - he seemed more tired today, but the roommate's family was in and out for hours last night and early this morning. Vitals were great today. Even though he was panting and felt like he wasn't getting enough air at times, even on oxygen, his oxygen levels were in the 95-99 range which was perfect. We think it was partially pain, they gave him a tiny bit of pain meds for the first time in a couple of days, and we think it was also anxiety and annoyance at the loud and drama queens for the roommate. Up twice for the potty chair. Morning saw another 50 ml of urine!!! Dialysis started to set up at 6 pm tonight, so I came home before 10 pm for the first time in ages. One of the best news is that the White Blood Count which had hit 35,000, and had come down on Wed to 28,000 was, this morning at...........23,000!!!!!!

Ok, sorry that no update Tuesday evening. I got home around 10 pm and sat down and fell asleep in front of the computer. When I woke up, I just went to bed. Tuesday was a little rough. Dialysis was rough on him and we had to put him back on oxygen. The other gentlemen in the room had a lot of his family come in and they were yelling and cursing because he had a stroke and they didn't approve of the restraints and attempted to take them off and he almost ripped out his NG tube. so not a lot of sleep for him. Wednesday was a LOT better. Up this morning and into the chair. While the hospital doc was still trying to do a ct scan the head of the gastric department said no. So she contacted his surgeon who said, maybe Sat or monday, but definitely not today. Which we were thrilled with because he's miserable for those. WBC count dropped. Normal high WBC is 11,000. He hit 35,000. On Wednesday he was down to 28,000!!!! His rectal tube was removed and he got to not only use the bedside toilet, but had URINE again - 50ml. His brain function is awesome. His roommate had more folks during the day that brought at least 5 children and were loud and running all over the place. The nurse leader is looking to move him into another room so he can sleep. 3 of his friends came over after work and hung out for 2 hours and did a TON of good for his mental health!!! Let's keep that energy coming this way!!!!

Thank you. I'm on whatever is lower than fumes to run on, and I know once he gets home, and he WILL, I will definitely need minions

Sunday was a good day. Monday morning, they moved Raymond out of his bed and into the chair by his bed and his NG tube bit it, so a new one had to go in. They shaved off his goatee and mustache at his request - it kept getting caught in his tubes and the tape on his dialysis neck port. WBC still up, but talking to the amazing Dr. Baggs today - one of the top gastric surgeons - that's the only sign of an infection - no fever, no confusion, etc, etc, and I point blank asked him if it could just be a reaction to the hell he's been through the past 2 weeks and he said absolutely. Raymond is now allowed to sit on the side of the bed with his feet on the floor if I'm there. Up is easy, getting back down with all the tubing and iv's is a little more difficult but we're doing it. Slow and steady. I need minions or productive elves while I get a couple of hours of sleep - LOL. Let's keep it up folks. One day at a time

Saturday - arrive at hopsital around 945 am and am told by his ICU nurse that an order has come in and he will BE MOVING OUT OF ICU AND INTO A REGULAR ROOM!!!!! Also dialysis today. Took forever, but he is now on the regular floor in a semi-private room. Had dialysis and I went stood there and went over EVERYTHING when the ICU nurse handed off to his floor nurse. Finally I'm home after 13 hours and got the cats in and fed and the car unloaded. Now for food, healing meditations, hopefully a bath and do something around the house before faceplanting and heading back out in about 10 hours.