;u; //smol wave
A-ahh so um, I usually don't really do this sort of thing? Buuuuut I really wanted to explain why gaia comms and ATs and art in general will be a bit delayed.
;u; Also a little bit more detail for my close friends on what's going on and how we ended up here
So, as some of you may know, my husband has Duchenne Muscular Dystrophy. It makes life pretty challenging, but eh, what ya gonna do, amirite? A-anyway. So, um, a little over six months ago, he started losing weight. He was choking more and not being able to swallow as well as he had been. We had assumed it was the progression of his disease, but wasn't entirely sure. Back in Feb. we had a consult with digestive health about getting a peg tube placed. This is a kind of feeding tube that's placed directly in the stomach and it also has this little valve that can release the gas that builds up in his tum-tum that causes A LOT of pain. The doctor had told us that because of Nick's disease, he would highly recommend seeing his pulmonary doctor. His pulm. doctor has worked with him for yeeeeeeeeeeears and specializes in my husband's disease, so he would know the best out of anyone how his lungs and breathing were and what cautionary steps they would need to take. Dig.Health doctor really wanted to work closely with him, so he said 4 weeks after seeing pulm. they'd schedule a date for the feeding tube. BOY HOWDY DOODY, MAH DUDE. I swear we scheduled with pulm. like, a million times. The struggle was it's like, two hours away and I don't drive, so we rely on something referred to as a cabulance. One showed up an hour after the appointment. Two showed up at the time of the appointment. The last one showed up when they were supposed to, but he and hubby got into it because the guy was pulling on his wheelchair and then lied about it, so Nick wasn't comfortable riding with him. After that, we tried again, but we kept getting the run-around with the front desk. "Oh, we'll call you with an appointment" but that call would never come and every time he called them, it would be the same thing. OH THIS WAS A DAMN DOOZY. Okay, so, we have to call to schedule a cabulance ride the day before the appointment at the latest. We usually get a call and letter in the mail about upcoming appointment, right? BUT LIKE, WE GOT NO LETTER IN THE MAIL AND GOT A CALL SUNDAY NIGHT. But the message cut off the day and time of the appointment. I was like "lol watch it be Monday"
He called as soon as they opened Monday Morning and the appointment was THAT Monday Morning
ugh universe, you are a heartless biatch
Now, let's flash forward to about two weeks ago. My husband has this thing called a power port. It's something to be accessed to draw blood because his veins are nearly impossible to get to due to poor circulation and contractures. Once a month, his port nurse comes to flush his port. She was highly concerned about the weight loss and his very low blood pressure and was adamant about going to the hospital. So after she left I gathered his bipap ((machine he uses to breathe as he sleeps)) and ventilator ((a device that helps expands his lungs and helps him breathe. He used to be better but nowadays he can only handle 5-10 seconds without it. He swears it's longer BUT I COUNTED DAMN IT)) and we called an ambulance over. We were rushed over to the ER. He was super dehydrated so they gave him fluids. The doctor was concerned about something in his lungs, which Nick tried to assure him it was probably read that way because the count of whatever it was was higher in people with his disease, but still, the doctor started him on fluid antibiotics. They ended up having to stop that. Nick also has congestive heart failure. Too much fluid can overload it and compromise him. So they prescribed the antibiotic in pill form. Oh, also, they weighed him and said he was 40 kilos
Guys, that's 88lbs
My husband was 88lbs at this point
The ER doctor was super helpful in trying to contact pulmonary to get this feeding tube thing up and running. While he couldn't get in contact with Nick's pulm. doctor, he got a hold of one of his colleges and assured us that he would relay the message and all we had to do was call again.
So, we were sent home. Nick was taking his antibiotics and he called pulm. office and omfggggg. Apparently the last person didn't tag it right and that's why that Monday appointment was fudged up?????????? But the guy tagged it as urgent and said we should get a call later that day
lol oops no call
So we called
ER doctor also called again
Primary Care doctor's office called
So lady at pulm. desk was like, you don't need to see doctor. Just schedule feeding tube
WHY DID YOU WAIT ALL DIS TIME TO SAY THIS
((tho if I'mma be honest, I feel like she just said that because their office was being so pressured))
So he called digestive health and they were so quick, They put him down for June 1st
Hubby's RN friend he's known since he was 6 and she was 16 offered to drive us
YAY VICTURRI! //shot
This part may be TMI but it's important dude to the fact it's why we're in this current state
So, for 2-3 days hubby was having really bad gas in his stomach. It was SUPER painful for him. He said he had to poop bad. So I get him all situated and there's liqueidy poop on the mattress pad he sits on. I was like //sigh// okii fine whatevs. Wasn't the first time. I'll deal. But when he actually goes to release the Kraken, that Kraken ain't comin' out. But it was really weird because he said it really felt like he was going. This would go on for every 30min to an hour. The 31st was particularly hell cause that started out at 4am. Please enter in that while hubby has trouble eating, he can eat some things, but during this, he wasn't able to at all.
So feeding tube day arrives yaaaaaaaay!~
Or not yay //crai
So that morning he was feeling it again. He was feeling so bad that he seriously thought he couldn't go to the appointment. And right he was. He was afraid he may have something called C.diff colitis. He mentioned to me a while ago that he knew someone who with his disease who died from it. ((omg I don't even know how that came up)) so like, what that is, Nick said it's when you're constantly pooping. My friend added that it when there's little holes in the bowel. So we're like, well, shat on a crackerjack. He called his RN friend and she got really worried and thought that could be it, too. WHELP TIME FOR ANOTHER RUN.
So off to the ER we went
omfg so the ER Doctor totally reminded me of a super mega nice Doctor Cox from scrubs haha
So they ran bloodwork and things seemed normal. They ruled out sepsis and while they didn't think it was c.diff, they couldn't rule it out due to the fact that they needed a stool sample and Nick hadn't had a bowel movement. Doctor super mega nice Cox theorized that this was happening due to the antibiotics, cause apparently taking antibiotics for something you don't have can do that to you. And remember, Nick was given fluid AND pill antibiotics. But they also found again that he was dehydrated. He also saw that Nick's heart was putting a lot of stress on itself. They tried crushing up aspirin and placing it in jello, but he ended up choking.
Doctor super mega nice Cox decided to admit him, if anything for the fact that he was severely dehydrated. They decided to place him in ICU because of the complications of his disease and how he needs ventilator and bipap and didn't think floor nurse or regular floor would be comfortable. Now, before we went up to the ICU, he was acting a little strange. He was zoning in and out. He'd seem to fall asleep in the middle of conversation. I had assumed it was after the anxiety medication they gave him, as it happened after that. As we went up to ICU he just seemed to be getting worse. One eye would be close while the other was half lidded and wandering, seemingly dull. At times he knew where he was. Other times, he thought he was home, or he'd ask me to move the head of the bed up and freak out that the bed moved when he didn't touch the bed remote, at times he's be panicked, saying they were trying to kill him. Other moments he would say it was a scary place or forget he asked me to do something and then yell at me as to why I was doing that.
As the hours clicked by, he just seemed to be more lethargic. He was constantly asking to sit up and lay down as soon as he did one action, He was constantly asking to switch from his vent to his bipap. The shortness of breath was evident in him requesting things in one-word questions. He began slurring his words. To me, a person not knowledgeable to how the medical field goes and knows from what she reads and sees on TV, it looked like he could have had a stroke. ((I ASSURE YOU HE DIDN'T THOUGH)) Things went from bad to worse. Whenever he took off his bipap to use his vent, his oxygen would go down. By this time he was hitting the 80s. After declining it twice, the nurse and RT((respiratory therapist)) told him he needed to use their Bipap or they would have to intubate. Again, he refused. I plead with him and he agreed to at least try it for a little while. After about five minutes, he wanted it off. They hoosked this very thin tube from their bipap to his to try something out, however, he wanted to use his vent. He was refusing to use his bipap. He was refusing to use their bipap, and despite giving consent earlier, he was refusing to be intubated ((in his file, he's under Full Code which means they will do whatever they have to to keep him alive)) His speech got worse, to the point that I couldn't tell what he was saying anymore. By this time his oxygen was dropping to 50. They paged a chaplin to talk to me ((you don't need to know the details of the reaction of seeing him refuse all that thnx)) There was no compromise. They HAD to intubate. I was escorted out of the room. Chaplin talked to me. He checked on him for me. Honestly, it seemed like an eternity before one of the nurses told me it was okay to go back in. He was heavily sedated. ((we're skipping this part as well cause this was more emotion on my part)) He was asleep for a while before the nurses came in to rotate him so that he was off his butt and laying to face the door. I didn't like not being able to see him so I took a chair and sat by his side. He was still going in and out of sleep, but awake enough to say he wanted the tube out ((had to write down the alphabet and point to the letters in his words to understand what he was trying to say)) At that point I met the team that was working on him for that shift/day/i dunno wat you call it. The doctor told me that he planned to take the tube out later, but Nick would need to use their bipap. If he didn't, the tube would have to go back in. Nick agreed to all of this. He then told me that at some point we'd need to talk about the "end of life" convo ((yep skipping that part, too)) Time skip to a few hours later where they take the tube out. He wanted me to stay for that. It's honestly good I did. So, when taking this tube out, the RT told him to cough. He was able to get some of the stuff in his mouth out, but not all of it. He needed his vent. The RT was fighting me, that he needed their bipap and couldn't use his vent. HOWEVER, Nick does something with his vent called stack breathing or something like that. It's where he takes multiple breaths in a row, usually three or four, and it helps him to be able to cough. If he doesn't use it, the gunk in his mouth would either end up in the mask or he'd choke on it. They let him use it AND HUZZAH HE WAS ABLE TO GET THE STUFF OUT! omfg really tho bro dun mess with me on that I'm with him all day every day I know what I'm talking about and what he needs to do. Anyway, after putting the bipap mask on, he immediately wanted it off. Wanting it off is an understatement, though. He was yelling, demanding for it to be taken off. Those pleading eyes honestly killed me. He went on about that until he fell asleep. After a while and he woke up, he was doing very well. He was resting and his heart rate was 108, a HUGE improvement compared to 122-127 or 130-141. I fell asleep and woke up to the new nurse on call talking to him. His muscles are too weak and his heart was too stressed out to stay on the bipap any longer. They had no choice but to reintubate him. The probability of coming out of this with a trach ((they create an opening in the neck into the windpipe and place a tube there)) was very high. While you can work to get it removed, I remembered the previous doctor saying that his couldn't be removed. Life, amirite? Anyway, they reintubated him about an hour after that. Like before, he's in and out, however, he's a lot less responsive and talkative ((or as much as you can be with a tube down your throat)) than the first time they intubated him. He was aware enough to tell me he loved me and wanted me to read to him. His heart rate when I woke up this morning was really bad, remaining in the 130s. It's since eased back down though. I think that's all for now. If there are any updates, I'll just put in this journal.
Huge figgin thank you to Erandiaaa StarfighterB kokohearts Gold-Cadet Rinuii
Like, I know you guys don't feel like you're doing much to be here, but please know that you are and I love you so much and I'm so grateful for you
um lulz it took me like, 2 days to write this my bad
6/5 Update 1: The nurse told me if he gets a trach, he won't be coming home
6/5 Update 2: They sent me home to get his keyboard and relax after that news. I got back and they said they were in contact with Pulm. doctor. He wants to be able to treat him so paperwork is going through to get him transferred to Seattle. @ w @ and now being told that eventually the trach can come out IF
he gets better6/6 Update 3: We got to University of Washington Hospital around maybe midnight-ish. They did a whole bunch of tests. They had to do x-rays like, 3 times because they kept pulling some of the feeding tube out because the other hospital put it in so it was coiled around his stomach. The nurse was putting a thing around his legs and I was like, what is that, and she said it was to help prevent possible bloodclots he may have and I was like, wait what????????????? Yeah, so, the other hospital pretty much kept me in the dark. When they did an Echo on him to look at his heart, they spotted a shadow that may or may not be a bloodclot. The other thing with the other hospital was the confusion about pneumonia. I was getting two stories but the doctor here cleared it up. His blood cultures were good. No pneumonia and he wasn't showing symptoms of even being sick. What it was is that his heart is working at 15-20% and his diaphragm is very weak and this is all due to the progress on his disease. I could take it. It's not the first time I heard his heart was working at such a low percent, to be honest. He told me that himself a long time ago. The real scare came at 4:30am. They wanted to try to get him breathing on his own. When they did so, his eyes were rolled back and he wasn't responding. They were afraid that he actually may have had a stroke. They took him for a cat scan but found no bleeding in his brain. When he came back, he was more awake and responding. The neurologist did some stuff and also couldn't kind anything wrong. Later, a shitton of neurologists came in. They didn't see any signs of a stroke and that was very low on their suspicion list. But the nurse did tell them that they believe he had lost consciousness like that because the vent was making him take too many breaths and his blood pH was too high, almost alcohilictic ((lulz sorry I spell it the way I hear it)). They tried the breathing thing again while they were there and it didn't pan out very well. They tried again a little later AND LO AND BEHOLD WE HAVE LIFT OFF. They said his blood gas looked good and he was doing well on the new settings that allowed him to breathe a bit on his own. He's scheduled for a peg tube tomorrow. THE VERY THING WE ORIGINALLY SUPPOSED TO COME HERE FOR YAY. His pulmonary doctor said once they get the tube in, they'll wait a little bit before also taking the breathing tube out tomorrow. His goal is to get him back to using his own bipap and mouthpiece vent. WHICH IS AT HOME NOW //SOBB// The nurse at the other hospital said that a trach looked inevitable and to take the bipap and vent back home. Nick assures me that the hospital has the same bipab and vent but I haven't had the chance to ask, so we'll see. I'd ask one of his family members to take me home to get it but he doesn't want me to leave since it's much farther. LET THE DICE ROLL WHERE THEY MAY. We talked a little bit and he said he does relly feel like he's getting better since being transferred ;u; yay!