Saturday, December 14, 2019

I almost died.

Updates from recently hospitaliztion to keep a record
Hey guys -- send me your prayers and good vibes.
I don't normally a lot of personal stuff, but I'm in the hospital for a few days and have gotten some calls/texts.
I have an infection that is causing me some major pain and stumping the docs a bit.
Thankful to have a team in place and family and friends sending their love.
❤️❤️
Ash

Update 1: I'm struggling to keep BP up and pain down. CT looked better than expected.

Update 2: the infection appears mostly superficial soninwill see a wound doctor. Biggest issues are the degree of pain I'm in. My body has a rash covering approximately 70% of my body and it burns deeply. Switching to new meds (steroids) , which makes me nervous. The doctors are very concerned as the rash is only getting worse :( prayers please. My blood pressure is slowly coming up but my heart rate is too.

Update: 3: skin reaction has gone down slightly. Will see an infectious disease doc and surgeon today. I will find out if surgery is required. BP and heart rate have stabilized. Currently on fluid, antibiotic #4, steroids, benedryl. and morphine. Pain is very bad, but I'm hopeful with the new improvements. Last night I had a fever, praying that stays away too. The staff here has been incredibly kind.

Update 4: the infectious disease doc thinks there is viable tissue under the necrotic tissue. He is trying to avoid surgery (recovery is much quicker without) so we are trying a enzyme that will help destroy the bad tissue. This can take a few days to do it's thing. If that was the only issue I'd be released, however my body is covered in a hot red rash and I'm still battling a fever and higher white blood cell count. My magnesium is also low so they added a magnesium solution to my meds list while.here. I was able to sleep last night. Tomorrow I will try to drop down to Percocet from morphine. The longer I'm on IV pain management the longer I have to stay. 

My immune system is very compromised right now, and Charley is sick so it's a blessing to be here in some ways. Douglas is doing a great job taking care of them!

Update 5: the rash has gone down some. However it's being replaced with small blisters all over. This is problematic because the original wound also was a blister so they are concerned with that, also because they are on my back and sides so laying down is painful. If you know me, you know that my veins are tiny...unfortunately my vein for my IV blew last night. They had to try for about 30 minutes to get another one because the IV team doesn't work in middle of night. They were able to get one in my left hand over my knuckle but it's VERY uncomfortable, and unfortunately the gauge is only small enough for fluid not antibiotics or pain meds so that will need to be switched out. Hoping the IV team will find the best vein possible with the use of ultrasound. 

Surgeons are still on fence about surgery. Definitely will not be released today. My potassium and magnesium are low so they are hanging meds for that too. My white blood count has started trending down which is great, it means the infection is going away. 

I miss my family:( this has been very difficult being gone away from my kids on vacation to Michigan only to be nearly immediately admitted to the hospital. Today is day 5. 

Thank you everyone for the calls/texts etc. They really brighten my day and help me cope with the lonliness. It's hard with having just moved to a new city, Doug hasn't been able to.come up and see me except very briefly on saturday.

Specific prayers: Great IV, Blisters stay clean and not infected. Pain management. 

I am so fortunate to have healthcare when it is denied to so many in our country and globally. I have compassionate healthcare workers, family, and friends. While some people struggle for even clean water, I see the blessings even in this. I am so thankful to Douglas and his ability to provide the insurance and step up majorally with our kids. And I'm grateful to work with a company that supports my well being and is being very understanding.

Admittedly there have been some.intensely sad moments in here, but I am making my best efforts today to remain grateful for what is happening FOR me and not focus on what is happening TO me. 

🙏☮️
9

Update 6: the blisters have increased and they are on every side and back so there's no way to lay comfortably. They started popping and it's incredibly painful, I am sadly back on morphine. Watching this closely as the original wound started as a blister :(. I'm struggling :( prayers, keep em coming. Positive vibes I need those too ❤️


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Update 7: Things have gotten worse the blisters are all opening and I'm in so much pain. I have pain up my spine and pressure in my head and ears now and an terrible migraine:( they said this can all be part of a severe case of red man's Just gave me dialaudid I'm hoping I can sleep through this . I have all lights off gonna rest and completely unplug will update when I can.

Update 8: I don't have any answers, but they have found a pain relief combo for me ❤️ thanks for all the prayers guys. Chin up!
Update 9: Experiencing very high levels of pain in my side and shoulder. It really hurts when i inhale the most. Blisters and wound are also very painful. I am being monitored.

Update 10: Andrea I owe you big time. She drove my mom Kate and Ronald down here to help Douglas and I with the kids. She helped me shower and brush and braid my hair and it's helped so mich. She's now on her way back home.

Update 11: it was a very long and painful evening. However I did have a bit of a turning point this afternoon. I saw a doctor with some answers. A lot of this is circling back to auto immune issues including psoriasis, but he believes I also have some other silent autoimmune issues. This is related to gut health, the thing I've been preaching for a few years. It's a part of the story. When I know.more I'll share. I'm still being monitored closely, have learned inhave a potentially life threatening med allergy, and some lifestyle adaptations I need to make. My pain is still high, as I am still suffering from blistering. Pain management is very important right now. Thank you everyone who is continuing to love and support me through this scary experience. Your calls, emails, texts, and gifts have truly made me feel lifted up and loved on. I still have some recovery ahead before I can go home, but I am truly thankful.

Update 12: things took a bad turn. Chest pain. Testing me for pulminary embolism. Please pray. ❤️had blood work, several new IV, CT with contrast, chest x-ray. My faith is strong that I'll be okay. my distress I called upon the LORD, And cried out to my God; He heard my voice from His temple, And my cry came before Him, even to His ears. Psalm 18:6.

Update 13: I know nothing except CT showed no blood clot!!!! ❤️

Update 14: can't believe there is a 14th update. What a drama queen 🙄. Things are going I don't really have anything new to report. My heart rate is staying pretty low (40s-50s) even with walking around. I've been trying to wean off all narcodic painmeds. Breathing is not bad, but labored. It just feel like it takes an effort. Honestly I feel crazy everytime.they ask how I am because the answer isn't bad but indont feel right either. I have been able to sleep more. I am saddened tomreport that Influenza A is in our home.right now (Doug and charley) which sadly puts me at risk too. I hate not.bejng there for them. I'm trying to be positive but I am so tired of being here . Here physically being the hospital, and also "here" in the way of feeling bad. I'd love to hear about some.good in your life

Update 15: I will.be released today. I don't feel well enough to be home, but i dont feel the hospital environment is the most healing anymore with all the the germs. I scan my body, and it's a lot like a left over battlefield. There was bravery, pain, blood, scars, and loss. My body hurts. It is black and blue and raised and red. The emotional scars -- the nightmares. They are just beginning. I hope one day Incan share my experience - but for now I am healing. Things could have gone otherwise, but I was given a chance at life. And I will embrace it with every fiber of my being. I know you want to know how I am -- the truth is... I hurt. I am struggling to breathe and keep my heart rate up, but I am not in danger. I survived the danger. I have home nurses coming tomorrow to help me continue recovery, and family around me. Liam only said three words, and it was everything to me. With a smile in his eyes, "oh, hi Mom." I will get back to messages and texts and everything as I can. I feel like this is a beginning of sorts. Love, Ashlee.

Update 16: the euphoria of being home was beautiful, but now I find myself in extreme amounts of pain and swelling. My options for pain relief are limited due to low heart rate. I have a home nurse who will be overseeing me over the next bit. The drug reaction continues to swell my upper body causing issues of its own. Prayers for relief would be appreciated. My poor body is swollen, painful to touch, and has temperature extremes. I'm trying tombe positive, it's just so hard. 

Update 17: since being home my body has become more red, intolerant, swollen. I am in extreme amounts of pain despite narcotics and benedryl. Reaction is unknown. Being sent to ER.

Update 18: admitted to hospital. Attempts at IV benedryl and steroids haven't been successful. Waiting for infectious disease doc in morning. Thank you for all your well.wishes they are received 

Update 19: I have no answers, but the hospital is doing everything they can to keep me comfortable. My white blood count was 26,500 which is high. I am currently on IV Prednisone, benedryl, pecid, blood clot prevention, and morphine. The morphine is keeping me pretty comfortable and I did sleep a few hours last night. Thankful for that.
Update 20 (11/24) :. Infection Disease doctor: not terribly concerned with wbc, because of steroid. Waiting on blood cultures. He wants to keep me on IV steroids, benedryl. Until clear. Calamine topically. Possibly immuno globlins. Keeping me until rash clears. He still thinks this is vancomycin not an infection but he is running 4 seperate blood cultures waiting to see what comes of that. He said maybe or maybe not by Thursday. He's not gonna discharge me until he feels confident

Update 21: 11/25ID doc just left: 1-3 more days of fluids and meds including steroids. Cancelling callamine while it helped dry out the rash it ultimately caused intense tightness and pain/itch. Notating increased rash on upper thighs hips. Continue steroid, pepcid, benedryl through IV. Discussed getting midline piccline due to poor vein quality is going to discuss with general doc. Gonna try new topical. Still having 9/10 pain scales treated with morphine

Update 23: No release for me today :(new IV going in doctor is putting in a piccline or midline this morning new antibiotics because he thinks there is a yeast rash as well as my rash spreads. Looking into some new meds topically for skin as everything this far burns. Maybe tomorrow, he's not sure. Depends on how the new IV goes. The pain is problematic, because my skin is peeling everywhere leaving new skin thin and exposed. I'm trying to extend out pain relief but at times it's not possible. Emotionally I'm struggling. It's a weird juxtaposition between feeling strong and brave and willing to match ahead and then in the next breath feeling sad, extremely lonely, and defeated. I've noticed that the pain is truly draining me mentally. I appreciate every call or text or message. I miss my family, I miss my doggie. I miss having a Christmas tree up by now, and being picked fun at for it. But no worries, I keep myself covered in my nutcracker blanket to hold on to holiday cheer 🎄

Update 24: change in plan! No PICC line (unless things change) I've been switched to all oral meds. If I can remain stable over next 24 hours, I may be able to go home for Thanksgiving with my family. Would you please join me in prayer and good vibes that a Thanksgiving miracle could happen. I certainly don't want to go home too soon -- so I'm not rushing it. But if I am well enough, I would be so grateful.

Update 25: I am home. 🙏 Pain is significant but improving daily. Thank you everyone. Long road of recovery ahead, but I am beyond thankful for life ❤️ I am restricted mostly due to weakness now, and that will just take time. I was the unlucky recipient of the Brayfield sickness so that sucks but it's temporary. Hopefully this will.be the last update on this thread. ❤️ I have a lot of changes ahead, and when it feels good to share I sure will ❤️