by MandysMom » Sat Jan 27, 2024 2:35 pm
Sorry I left you hanging. This is a long post, but it's a catch up for the past two weeks.
It's been a tremendously stressful and exhausting week. Today is Chris's 9th day in the hospital. Admit diagnosis was Sepsis with kidney failure and Rhabdomylosis. Beta Strep caused the other two. Rhabdomylosis is breakdown of muscle from either extreme exercise or infection and often leads to kidney stress. It all began with what appeared to be a GI bug on Sunday January 14 and it was GI bug vs food poisoning from a pizza. He had a fever as high as 102.8 and the usual nausea, vomiting, diarrhea. By Tuesday afternoon, his fever came down and we thought he was on the mend. Then Tuesday late afternoon he began to have joint pain-ankles, wrists, left clavicle. Treated with Aleve and Tylenol. Called Dr Wednesday morning and was told likely virus and continue Tylenol and Aleve and put Lidocaine gel on hurting areas. Thursday he was worse and Friday early morning he could not get up off the floor where he decided to sleep Thursday night. I called 911 and fire crew from our 2 local stations came to extract him from his room where he had slept. I followed the ambulance after feeding our Sweet Stormy who has some health issues ( I now spoon feed her and give sub q fluids). Took care of Suzie, our parrot and tied up loose ends for a day I figured might be long. I called my handyman and he came and made sure firemen got our porch rail back on right, which they removed to safely slide Chris onto stretcher, rather than try to carry him down several steps making 2 sharp turns.
I reached the hospital and they directed me to his cubicle. He is on IVs and says, Mom I have sepsis and my kidneys failed. That was hard news to take. They were already running multiple IV antibiotics through multiple IVs. Immediate blood tests had shown severe sepsis, but it takes 24-48 hours to grow and see which bacteria is the culprit. Early Sunday, having been moved to a telemetry unit ( kind of between ICU and a regular ward), we learned it was a very nasty bug-Beta Strep Sepsis, kidneys were in failure and he had muscle breakdown. The week (9th day today) has had ups and downs with spiking fever, severa pain in his back and all limbs, and very slowly coming back kidneys. On Sunday I was told he may be on dialysis if kidneys didn't come around within 48 hours . He was swelling and deep red color creeping up his limbs. Sunday when B strep news was revealed, Dr and nurses grabbed permanent markers and began marking boundaries of redness and swelling- this condition , if not caught in time can lead to amputation and often death. His Dr, a hospitalist (a Dr who's sole job is caring for sick in the hospital) said, we don't know if kidneys will come back or to what degree. We do know he was on the verge of Toxic Shock, from which death is pretty likely, but we have reduced that risk because you sent him here just in time.
He is still on heavy duty antibiotics specific to strep and thankfully this was not a resistant strain. Both MRIs and Cts have been done. Initial CT showed masses in both lungs, thought to be infection sloughed off from the heart, a cozy place B Strep loves to do its dirty work. Often heart valves are damaged, along with other organs. Also, infection can set up housekeeping in joints and bone. The MRI and CT done Wednesday and Thursday showed no pockets of fluid and bone is ok, but severe tendon inflammation, along with widespread whole body inflammation. Infectious disease team believes he will need weeks to months of antibiotics to be sure he does not have infection hiding somewhere. He will require extensive rehabilitation. He can only raise left arm enough to help feed himself and drink, but can't raise arm to shoulder height. Right arm he can barely move and right hand is still very swollen. His legs have come down some, but he can barely move them himself, due to tendon inflammation and muscle damage. His back and neck hurt a lot and he is still getting IV morphine time to time esp after being turned or lifted out of bed. It's expected that once infectious disease Drs get a plan together for ongoing antibiotics, he will transfer to a Skilled Nursing Facility near our home which has a separate rehab unit, which I've heard good things about. He has a long road ahead. His lungs are finally clearing and last night his breathing was finally clearer with almost no wheezing, though he is still coughing up nasty stuff. His kidneys appear to have returned to full duty, but will have to be followed to see if there is long term damage. His spirits have improved now that he accepts that I am not rejecting him and "putting him away" in a nursing home. Somehow he got the idea from our Dr, who took over his hospital care Tuesday , that I was saying he can't come home. We have convinced him that's not true by my repeatedly saying, you can come home when you can walk up the 4 steps into the house, get up out of your chair, use toilet and shower on your own. I keep telling him things like: I cant wait until you can come home and fix the tv( he has all passwords in his head and keeps our ROKU connected and running- I don't even know how to get a channel! ) and I need him to reset our router, etc.
I'm exhausted. I've been at his bedside 5-8 hours every day for 8 days and will go in a while today again. I'm less worried now but lots ahead with preparing my house for his return- he has bad habits and left a cluttered mess in his room and around his chair, which handyman and I are clearing. I've done many loads of laundry over past week, as Chris neglects that chore. Chris is 43 years old. Has struggled his entire life with ADHD, BiPolar, OCD, Oppositional Defiant Disorder, IBS, Dyscalcula and has history of back injury. Plus he is carb driven by both disorders and his medications. Chris, due to his disorders and the medications, has severe food issues,in that some foods make him gag and many don't taste right as you and i would taste them. His IBS is flared by some items we know ( all cruciferous veg, which also my body does not like), and dairy, and some items we are not yet sure about. Food is a tough subject between us. So, he is morbidly obese. This has been a hard lesson for him. He is now aware and speaking of needing to change his eating to heal. Last night I fed him the pot roast and potatoes that came for dinner, but he still won't touch their ugly over Italian seasoned zucchini- I tasted it and would eat it but sure not like it! His showing willingness to try harder with nutrition will be one key to healing and how hard he works in rehab will be another key. His determination and attitude will be what I need to support , along with making sure they don't feed him junk. Stormy and Suzie bird and I are hanging in there. This will be my first day without Sean the handyman here. As much as I've been annoyed with Handyman Sean, for his ADHD behavior, he has stepped up and worked hard this week and supported me in every way. He is well paid, but could be doing other jobs, but he sticks by me.
I'm trying to adjust my eating schedule to keep my body working well and healthy, drinking my hydration and taking my RXs plus trying hard to sleep ( not easy with almost nightly calls from scared Chris.) Chris has reading and language skills at college level but math at 4th grade. Emotionally he is around what you expect of a 8-10 year old. Before sick, he handled his own breakfast and lunch and sometimes dinner, cared for himself but not good at housekeeping (know any 8 yr old who does a good job with their room and laundry?) . He helps plan meals and helps shop, carries stuff, assembles stuff, runs our Internet/tv packages and handles service calls for many things in the house. Due to Dyscalcula (the math equivalent of dyslexia) he does not do well with any financial stuff, so I handle that and slowly teach him. We get along great except my wanting more out of him housekeeping wise for his spaces and help with the house. I also want him eating better. It's easy for outsiders to judge on his appearance, because he is so carb driven and has shown this week that he would rather not eat than eat certain foods.
Chris just called and said, within the original boundaries where Dr and nurses marked the redness and swelling, he is now peeling like after a deep sunburn. He said left had where peeling is complete, he can move the hand better and was able to clumsily feed himself eggs and toast for breakfast, getting most actually in his mouth! That's a big win, he prefers to feed himself, of course! He said where skn has peeled and other areas he Can move better but it raises his pain level to 9 or 10, so he is exhausted after and needs pain med. he was also hoisted into a chair for a ride out to where sun comes in window for 30 min. He is very tired but excited and happy at this progress.
That's about it for me. Stormy needs breakfast and so does Suzie and I Need my shower. I eat in early afternoon and mine just needs warming.
Sorry this was long in coming but my priority has been Chris, Stormy, Suzis and my own health this past week.
Velda
. Then to Home Depot to get a paint chip for a color I think will go well with my bathroom flooring. Not in a hurry to head out though, as it’s drizzly out there, temp is currently 33°. P,us it’s early yet.
Should make mowing interesting. We had a call saying we should upgrade our internet to fiber optic. I said no thank you and was told well you will soon have to because the old system is being phasing out. I replied so are we, he hung up. 
He did text blood results last week. Only learning about my granddaughter on Instagram. Her latest post showed her getting an infusion, but that's all I know other than pictures of her embroidery.