As I stated, earlier this year we moved from the house we had been in for 10 years to a house nearby which is also on land (so nice). Ladybug, Hubby and I moved into this 2 bedroom, 2.5 bathroom house at the beginning of the year and have more than enough room for us, however, the garage is PACKED to the brim with Hubby's work stuff. I'm not sure I talked about Hubby too much before but I have a feeling he will play a big part in my musings now. Anyway, so we moved in and got situated and finally got everything cleared from the old house and I was ready to move forward and not look back. It hurt to have to move from the home we knew for so long but the owner wanted to sell it and we couldn't afford to buy it AND fix it up, which is so desperately needed. So we moved. Ladybug misses her horse friend nearby and misses being so close to the school she went to too. She used to be able to walk to and from. Now we live on a street w/ no sidewalks and she has to take the bus.
Ladybug is in the 6th grade now (OMG in the 6th grade) and is fully into the pre-teen, hormone driven attitude we all know and love so much. It's so hard to find balance with her lately. I want to show her love but darn it I want her to do her freaking chores and keep her room cleaned too. Sigh.... on top of that she's dyslexic which causes all sorts of problems that we have had to work out over the years. She likes to read but it's hard for her. She knows she smart but feels dumb. It takes her a lot longer to do things than the other kids in her class. And it's hard to watch the struggle and find that balance of not babying her but being her advocate as well. School started a couple of weeks ago and now she's "dressing out" for gym!!! It was a huge scare for her and I remember those days of embarrassment too but I was in High School. I'm not sure what's better to be honest, 6th grade or High School but either way bullies suck big time and she's afraid of being teased because she's bigger than most girls her age/grade. She's darned near as tall as me (I'm 5'5") and is wearing Women's sizes as well. I'm afraid for her and hoping that the kids at her school won't suck this year and make fun of her for things she can't control.
Now, onto my other tough topic, Hubby. Sigh.... Hubby, for his entire lifetime (maybe it did start in the womb, I can't be sure) has always been a workaholic. And I mean ALWAYS. The older kids remember his constant working and how he was rarely ever around. Ladybug only remembers when she was real young how they used to play Night Night House, Tents, Watermelon Picnic and w/ Baby Gracie, but really even then he worked all the time and only rarely did those things, which is likely why she remembers, because they were rare and special. Anyway, so he worked through the move, rarely helping at the time with packing or anything. He stated that he wasn't feeling well and that he would get dizzy and it took everything in him to go to work to earn money for the household etc. So, I moved us mostly myself. I packed up that house mostly on my own and moved things over one car load at a time for WEEKS before the "big move". With the help of some paid movers, the kids and the kids' friends, we moved right before New Years. And Hubby continued to work more than he was ever home. He loved his work, always has. It gave him pleasure to know he was doing a good job and people often told him so. He was self employed as a technician and did router, server upgrades for a lot of places like McDonald's and Chili's etc.
Anyway, Hubby had been feeling really ran down and was getting dizzy whenever he would look up (which he needed to do often in his line of work to look at cable or even run cable.) So he went to the doctor (after I yelled at him) and they did a bunch of tests. He started passing out when he would get up in the mornings, which scared the crap out of me and we figured out this was due to low blood pressure. Earlier I had been diagnosed with High Blood Pressure and had a BP machine at home. So we tried to be sure he had ways to fix that (Gaterades etc.). He ended up at an Ear Nose and Throat doctor and they found that his lymph nodes were enlarged, as well as his tonsils. They decided that he might have Lymphoma and that the tonsils needed to come out. The day before his surgery scheduled in April he went to the ER as he wasn't feeling right. The ER doctor told him that he needed to eat and drink more as he was dehydrated. The next day he was turned down for the surgery because the anesthesiologist didn't want to risk his BP dropping during surgery and referred him to a cardiologist. I bet those that don't know me think they know where this is going.... you don't. The cardiologist said that he needed to eat and drink more often and stay fed and hydrated and basically just take care of himself better. That there was nothing really truly wrong with his heart etc. So the surgery was rescheduled for June.
Hubby's birthday was June 2nd and I had a BBQ for him that day and the kids came over, as well as a family friend. It was a nice day. The grandbaby was there and the kids made sure to get some pictures of him w/ the baby. It was chaotic for me as I was preparing all the food, sides etc. but it was nice to have the kids there and eventually I told them they had to leave as it was getting late and I had work early the next day.
On June 5th, it was his surgery. I took him in and it went fine and we came home. After 24 hours he was still ok and able to move around on his own so I went back to work. He messaged me that he was in a lot of pain and the pain pills weren't helping so I called the Dr. who did the surgery and told them and they said that this was expected etc. The next day we were still trying to get food and liquids down him and he was having a really hard time with it and I called them again. I was worried that he would start passing out because he wasn't able to eat and drink like he should. On the Friday after the surgery they told me that they would refill his pain med and that he could take Ibuprofin 4 hours after taking the pain med up to twice per day. This seemed to help Hubby and he actually went to work on Sunday (two days earlier than he should have but what did we expect). He worked Sunday, Monday, Tuesday and Wednesday. Then had Thursday and Friday off. He told me Wednesday he wasn't feeling well. Was tired etc. Ladybug really wanted to spend some time with him and he kept putting her off (as was normal for him) and she was getting upset so I got into an argument with him on Thursday about it.
Now I don't sleep well and likely never really have. I had gotten a weighted blanket and on Thursday night was trying it out for the first time. It had been a long time since I slept well, months if not longer. I was finally sleeping pretty good. I had Friday off as I was going to go to my parents to get some stuff for me to do art projects with. At 4AM Hubby wakes me and says that he's coughing up blood. I asked if it was more than a tablespoon and he said no. I told him not to worry until it was more than a tablespoon as that's what the ENT who did his surgery told me. I went back to sleep. A little before 6AM he came back into the room and turned on the light and told me "This is more than a tablespoon." and showed me a bloody napkin. Those were the last words he said to me that day. He went into the bathroom and proceeded to cough up a LOT of blood into the toilet. I was getting my contact lens in and was getting dressed. I was on the phone trying to get an on call doctor. I told him he should get dressed to go to ER. While he was putting his shoes on I cleaned up the bathroom as best I could because I KNEW Ladybug would be in there later and I didn't want to scare her. We locked up the house (Ladybug still inside sleeping) and got into the car. I messaged her that I was taking him to the doctor.
On the way to the ER I asked him questions, mostly about the meds. When was the last time you had pain meds? When was the last time you had the ibuprofin? Did you take more than you should or more often? When did you have your prescriptions? I knew at the ER they would ask these questions. He messaged me the answers on the way. He had me pull right up the front ER doors and I got out the car and walked in with him. He was still coughing up blood in a towel. I told them what was wrong and they took his vitals then took him back pretty quick. I had to move the car and when I got back to Bay 22 he was on his knees coughing up blood faster than they could suction it. The nurse was trying to remain calm but I could tell that things weren't going ok but I didn't know how bad it was. I stood up in preparation to get out of the way for the other staff I knew had to be coming and they took me to the internal waiting room in the ER. I was there for a few minutes, messaging my mom who I had been trying to keep updated, when they sent in a Chaplin. I still didn't realize how bad things were. I told her what was going on and she listened. She held my hand. The nurse came in asking about meds, which I answered, she left. Another nurse came in and said that he had "coded" but they brought him back and they were going to take him up to surgery to seal the bleed on his left tonsil area. Then a doctor, the surgeon, came in and spoke w/ me. About this time I had tried reaching Hubby's mom and she was calling back. I told her that we were at the ER and he was going into surgery but I had to go talk to the doctor and would call her back. The doctor explained that Hubby had died but they brought him back after finding a 12 inch blood clot in his breathing tube. They were going to take him up to seal the bleed in surgery. I could see him but he was sedated. I did see him on my way up to the surgical waiting room and he was already intubated (breathing tube in his mouth down his throat). He was cold to the touch. I talked to him a bit and kissed him... really still not knowing how bad it was. I walked up to the surgical waiting room while trying to find someone to take Ladybug for the day and finally a friend picked up the phone. I quickly filled her in as I was getting into the elevator and she said she would get her in an hour. I got to the waiting room and told Ladybug that her Daddy was going into surgery and Ms. M would pick her up in an hour. To please be ready and make sure all the windows were closed.
I called the other kids, left messages and texts, all while the Chaplin watched. She mentioned that she was nearly off shift and that I needed someone with me. I asked my mom to come. I didn't feel like I really needed anyone. I was handling things pretty good, even the Chaplin was amazed. She gave me an Angel worry stone that she had been carrying around for a long time in her pocket. That stone would help me more than I could ever imagine. She left and Mom was on her way. I watched the board that had all the surgeons on it and handled texts to friends, trying to keep my mind busy. Finally saw his surgeon disappear off the board and called the desk. Someone came and got me saying they were taking him to ICU and she took me down to THAT waiting room. Mom came in shortly after that and the kids called in. I filled them in as best I could. Ladybug was picked up and having fun at the friends house. Mom and I talked mostly just keeping my mind off of things and processing things that needed to be done. Around 1pm I figured I had to eat. I hadn't eaten at all and even though I wasn't hungry knew I had to eat so we went downstairs to split a cheese burger. It was surprisingly really good. Blue showed up about this time and we met in the hallway upstairs. We walked back to the waiting room where I told Mom she could go home. Cassie showed up after that, followed by Pink. The Boy moved to Texas years before and was always hard to get a hold of. We got to see Hubby for a while, hold his hand, talk to him. Around 2pm they stopped his sedative. They said it could take up to 90 minutes for him to wake up. at 5:30 he still wasn't awake. I took the kids down to eat although I couldn't eat anything. Pink left as she had work the next day. Blue and Cassie were with me when the Doctor called. We met him in the waiting room near the ICU. He said that he should have woken up by now, but hasn't. It could go either way. He could wake up and be fine and make a full recovery or never wake up again. He has seen it go both ways. Blue and Cassie were crying, I couldn't cry. The doctor asked if I had any questions and I didn't. We went to go in and see him.
My mind was full with how I was going to tell Ladybug that her Daddy was never coming home. That even though she begged for him to spend time with her, that would never happen. I didn't know how we would make it on our own, with only one salary. How we would thrive. All this was racing through my mind as we walked into his room in the ICU. Room 13. I walked around the bedside and held his hand. I told him that I needed him to wake up and began to cry. I told him he just needed to wake up and his eyes opened. I cried even more. Blue and Cassie were hugging me I broke down. I talked to him for a while and he went back to sleep. I thought for sure the next day he would be even better. So I told the girls it was time to go home and rest and pray. I went to pick up Ladybug to tell her what was really going on as she really didn't know.
Ladybug was so very mad at me for not bringing her to the hospital with me that day and not taking her right then but I was exhausted and knew that she would go the next day. Blue was going to spend the night and the next day w/ Ladybug for me. In case the hospital called about Hubby, I needed to be able to leave at a moments notice.
Sleep came even worse than normal. Nightmares about what was going on were many and ultimately I got up around 5:30 and was at the hospital at 6. There was no change. He didn't wake up anymore. I held his hand and called his name. That afternoon he would respond to his full name and cursing at him but little else. He would eventually that day widen his eyes to answer certain questions. His mom, Aunt and cousins saw him that day. Ladybug and the other girls came by too. It was a long, exhausting day. I was playing music constantly for him as he loves music.
He was to be in a coma like state for 2 weeks. They would do two MRI's which would show nothing and an EEG which was just "slightly abnormal". Ladybug and I were there every single day. I spent about 10-12 hours there a day. We would spend a lot of time praying for him, talking to him, putting essential oils on him, loving him, holding his hands, trying to calm him down (even though he wasn't really awake), reading to him, singing to him and just being there. Ladybug was so resilient and never treated him differently than if he were sitting there wide awake. The other kids had their issues with visiting him, still do.
The third week in ICU he started to come around more but couldn't talk. They put in a PICC line to make meds easier and also put in a Trachea Breathing Tube and a PEG Feeding Tube. It looked like we were in for the long haul. No one could tell me if he would come out of it and ever be himself again. At the end of the third week they were going to move him to an Acute Care facility (hospital) because he couldn't remain in ICU forever. This place was 30 minutes away from the house, whereas the hospital was only 10. I also had to start going back into the office part time (I had been working remote for two weeks). The day that they were going to move him my landlord called. I had told him what was going on. He stated that someone (a neighbor) had reported that I wasn't taking care of the lawn (although it had been mowed the week before by a friendly neighbor). He wanted to come look at the property and house. That was 10 minutes after I had showed up to see Hubby. I had to leave to prepare for his visit and was in tears as I had never been away from him during the day and he looked mad at me. So I left. I mowed the lawn again myself when it was more than 90 outside. I cleaned up the inside of the house while arguing w/ Ladybug for help. Then the hospital calls and tells me he's being moved today. I broke down and just cried. I was having a panic attack. Not knowing how I would do everything that needed to be done. They said they could move him as late at 6pm. So we kept cleaning the house and the landlord showed up an hour early. I was covered in sweat and who knows what else and we went through the lawn and house. He said he would make sure that everything was taken care of and that I was doing all that I could to keep everything up to date. I took a shower then went to see Hubby before his move. I had to pack up his things (three weeks, we had a lot of things over there) while Ladybug talked with him. The people were already there to transfer him and put him on the gurney. After I spoke w/ the nurses and transfer people I went up to Hubby and he was awake. Ladybug was trying to get him to smile. I asked him if he remembered the Mad song he had made up and sang it to him. He smiled and tried to laugh. This is when I knew he was himself and I nearly cried.
It's now been almost 9 weeks since this has happened. A lot has happened in that time. He went to that place 30 minutes away and slept most of the first three days until we got meds regulated. Then he started moving mountains. He was awake and aware the Tuesday after his move (on a Friday) and when we came into the room he spread his arms out wide for a hug. I would later be told by him that he didn't remember seeing/talking to us before then and that was like the first time he had seen us. I asked him if he wanted a hug and he slowly nodded his head. Ladybug and I in tears gave him hugs. He cried too. He still couldn't talk w/ the Trachea tube in. I wrote down some words (our names) and asked him what that was. He was able to point to the right people and it was amazing to know he could still read. I wrote the ABC's on a piece of paper and he would spell things out for us. Quickly he advanced to having the Trachea tube pulled out and bandaged. He still couldn't talk well and sounded like a Scooby Doo Monster to me (and yes I told him this). It would take time and a lot of effort to improve. He still had a catheter and "brief" (diaper) on. He didn't realize he was supposed to go in the brief. I told him and he was so embarrassed. He was a very private person so this was especially hard for him. They ended up giving him stuff to help him GO and when he did he was embarrassed all over again. As time would go on I would end up being the person to clean him after this would happen. I would learn how to move the catheter bag when he needed to do something or was moved to the Cardiac Chair for us to take him on a walk. We had to gown up like it was the beginning of the Zombie Apocalypse because his trachea site was infected. This was especially hard on Ladybug.
Ladybug got sick for a couple days during this time and couldn't come to see him, which broke her heart. But we got into a schedule. I would work at the office for a period of time then in his room the rest of the time. We would begin to watch movies with him as he didn't have a roommate. He was there maybe 2 weeks before he had progressed enough that he was to be moved again. He was eating Pureed foods at this point too. He was moved to a facility that was 20 minutes away from home and the first night he was moved, Ladybug and I cried at the horror of this place. It was LOUD, crowded, smelled bad, looked old and was just everything we thought it shouldn't be. I didn't realize I had to tour these places and felt horrible leaving him there, even overnight. I was back to working full time in the office at this point and tried my best during the day to get him moved. That evening when we saw him they were trying to get him to GO in a bed pan. I asked that they give him some privacy (as much as you could have w/ a roommate and an 11 year old one curtain away.) I was trying to talk to him and realized that the catheter bag was laying ON TOP of the bed and was over full. I said something and his nurse gave me an attitude about it. I told her that we would want to take him for a walk when he was done and she said we would have to take his feeding machine w/ us. Long story short we had to get clearance from the dietitian (which I did) and she didn't like that at all either. I was NOT happy at all with that place. It took me a week and a half before I was able to get him moved to a place closer to home and I made sure I toured this place.
"They" are right when they say you won't like any of these places, because you won't, but this place was better than where he was. He had his own room for a couple of days before he got a roommate. This roommate was better than the last one because the last one had the TV up really loud all night long. The roommate was only there for a week and we did have some issues with the staff during this time not properly responding to the call light for the roommate when he had to be cleaned up after a bowel movement. I reported her to the head nurse on site the next day. Two hours that poor man had to lay in that. Just not right. By now Hubby was able to get into the wheelchair and in and out of the bathroom by himself. It was a miracle when he got the catheter out and was able to pee for the first time and another one when he was able to have a bowel movement! You never know what you have until it's gone.
He's been in this place for three weeks now and although it's not the best, it could be worse. I've been able to take him home once a week on a weekend day for him to be able to be at home for a bit. He's able to walk w/ a walker if the Physical Therapist or myself is with him and we try to walk at least once per day when we visit. I am able to give him showers every night too. I haven't missed a day of visiting him regardless of what's going on. I'm there every time he has dinner and help him with the shower and into bed before leaving to shower and go to bed myself. He might be coming home in 2-4 weeks. I'm hoping he goes to one more rehab place that will do intense rehab for 3 hours per day to get him really ready to come home.
It's been a while since Ladybug and I have able to do something, just the two of us. I feel that I'm neglecting her in some way but I can't do everything all the time and I'm hoping that there will come a time soon that we can do something just the two of us again. She's had to grow up a lot these last couple of months and I'm both glad and sorry for it. I hope that this situation teaches her patience and strength. I hope that as time moves forward that we are able to work as a team to do what needs to be done without argument, but I won't hold my breath.
As much as I have thought I wish I had the problems I thought I had three months ago, instead of these problems I have now, I'm not sure I would change things. Hubby is a different person. He's more patient and caring. Although he's had outbursts, he has also apologized to Ladybug, which he never would have before. He's more understanding and appreciative of what he has and who he has. He seems to understand that family is more important than he ever thought before. He even went to a family event with my family one day, which he hasn't been in years due to some problems. He wants to be different and doesn't like who he was before this all happened. This event changed him for sure but it's also changed me. I really try to be more patient than I am used to and try to think my responses through when he's upset. I just wish I wasn't so snappy at Ladybug and knew the magic thing to say to get her to help out more often where I need it. Maybe that will also come in time.
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