One year ago today.... Terrible Thursday

It’s been one year...

A whole year already since that Terrible Thursday… 

A kidney stone and a bladder infection. That’s it. Something that seems so minor is what landed our mom, who had previously been super healthy and exercised daily, in the ICU with less than 5% chance of living. She went into septic shock and had to be in a medically induced coma for nearly a week, while the medical staff worked a miracle to keep her alive.

PSA: don't mess with bladder/kidney/urinary tract infections. Don't try to treat it at home, get yourself to the doctor as fast as you can. It's not worth the risk.

I’m going to share a few pictures I took when mom was all hooked up to the machines. They almost lost her when they were putting her on the continuous dialysis machine that first night, but she was still hanging on the next morning. Every time the doctors came in to talk to us, they were pretty grim and said they were just taking things hour by hour.

This first shot was at 4am on 1/30 while I was laying on the pull-out couch in the room, squashed in with my dad, trying to get some sleep. I was looking at all the lines going from the pumps to mom… Major props to the nurses for keeping all of that straight.

This next picture was at around 7am on 1/30, I was trying to get a picture that didn’t include mom’s face or anything, but still showed the massive number of bags/pumps/machinery that were keeping her alive. It was not too long after this that Christina and I took a break from the hospital and came to terms with the fact that she probably wasn’t going to make it and we needed to get ourselves in the mental headspace to be able to deal with that.

So, how is she doing now? She’s still taking a bunch of medications, though they’re slowing weaning her off some of them. She has had 2 surgeries on her right hand to cut back the exposed bone from where the tissues died at the ends of her fingers. She had surgery to have the mega stones removed from her right kidney at the end of November, and the shards that she was passing after that seem to have slowed down. She hasn’t had to have any surgeries on her right foot, but there still aren’t any toenails and she’s still getting feeling back in it. Her middle toe has been trying to heal over, but will occasionally break open, so she keeps a bandage on it to protect it. She’s had some issues with her eyes, with glaucoma type symptoms but doesn’t actually have glaucoma. Her hair has pretty much grown back on the back of her head, she is just sporting a cute shorter hair cut now (shhhh, don’t tell her – I actually like this cut better than when her hair was long).

I took some shots of my parents together at Labor Day, since it had been more than 15 years since they last had pictures done. Here's one of my favorites:

It’s been a rough haul for her and she’s still recovering. Thankfully, she’s paying close attention to her body and getting to the doctor or hospital anytime something seems “off” and might need medical attention. We are so happy and thankful that she is still here with us, believe me, we know how lucky we are. Reading back through the blog really brings it back to us and remember what we were going through at the time. I think we’re all closer now after going through this, which is a nice side benefit. We thank every one of you for your positive thoughts and prayers while she was struggling to pull through and afterwards when she was coming back and healing. 

Here are a few words from our drama mama herself:

I am working full time, and feel that I’m thinking almost as well as before. My shorter fingers on my right hand have relearned how to type. I have the full feeling of touch in my left hand and am almost there with my right.  More nerves are popping back in my right foot all of the time. My hair has thickened up nicely.   I am to the point right now, that I can honestly say this is good enough.  I’m still improving so this is good space to be in.

To be real honest with you, I didn’t feel very bothered about the whole process. It never occurred to me that I would not heal.  I just took it one improvement at a time. I called them my daily miracles.  This was not through an effort to be like I felt I should be.  This is just how it was.  I am very thankful that I did not have to feel depressed through any of this ordeal.

I would like to add my thanks for any prayers and well wishes that helped me through this. 

- Alice

Much love to you all...

Even shorter fingers now?!

Just a quick update on mom… The last update I posted some pictures of her right hand ring and pinky fingers, where the bone is sticking out a little bit at the end. Her body basically had naturally amputated the dead tissue from the dead tissue. She had to go in for surgery to get those bones cut down a little bit and then the tissue sewn over to close it up. Our bones aren’t supposed to be exposed to air, so they were dying and splitting. She’s still all bandaged up, so I don’t have any pictures of them post-surgery, but I have some with the bandage. 

6 months ago today was Terrible Thursday

So, Terrible Thursday was 6 months ago today…. I figured I should post an update on how mom is doing.

She’s been going back to work 4 days a week for 4-5 hours a day, but some days she only makes it a couple of hours before she’s exhausted. Her stamina just isn’t there and she’s pushing herself pretty hard to get back to the grind. Lately, she hasn’t been sleeping very well and getting only 3 hours or so of sleep, so I think that’s catching up to her. She hadn’t been napping at all during the day, because she didn’t want to make it harder to fall asleep. I believe she’s been trying to get some catnaps now, which should be helping.

The black bits on her hands and feet are completely gone now! She only has her right foot bandaged from the ball of her foot and over the toes, because of the open wound on her big toe and the “hole” on the end of her middle toe. The big toe is almost healed up, but that middle toe is still draining. The foot doctor saw her this week and wants her to come back in 4-6 weeks. If everything is all healed by then, she doesn’t need to come back. Yay!

Possibly the last blog post... happily ever after?

Mom had her dialysis port removed on 3/13! Yay! She's officially done with dialysis. She's going to be going in on Wednesday to have a procedure done to remove the small stones in her left kidney. They'll be going in through the nephrostomy tube to do this, then they'll remove that tube. They haven't decided how they're going to get rid of the large stone in her right kidney, but are talking about possibly making it "explode" and then pulling the pieces out using laparoscopy. That won't be done for another few weeks.

Quick update: Mom's home now!

Just a quick update here... Mom went home Tuesday evening and is settling in there just fine. They're running around a lot to PT/OT and miscellaneous doctors appointment, but she's sleeping much better now that she's at home.

Weekly Updates Now...

I'm going to just be doing these updates once a week now, things aren't changing enough to have much to talk about on a daily or every other day basis. Unless something happens, I'll be doing weekly updates.

It's been a month now...

Well, it's been about a whole month now since mom went from a healthy 61 year old to almost dying. She's come so far in such a little amount of time!! My son and I went up to visit her yesterday for a few hours - we wanted to go for a few days, but they were calling for snow today. It was a great visit and she's doing so much better since I saw her 2 weeks ago. He helped her do some of her therapy exercises and worked on typing with her on her laptop. It's hard for her to type, since she doesn't have much feeling at all in the fingers of her right hand. She has a heavy finger on the "K" key, which provided lots of laughs for them.

Another week at rehab!!

Mom gets to spend another week at rehab, thank you insurance company! I think it's a relief for both mom and dad, she has time to heal up more and do intense therapy while he has more time to work on the house. My kiddo and I are super excited to be going up north this weekend to visit with my parents... mom is really looking forward to seeing her grandkid again!

She was allowed to skip dialysis yesterday, then had an appointment with the urologist today. They are planning on removing her kidney stones in a month or so. They'll do surgery to get the one out and then do ultrasonic to break up the others. Yay for a plan! (even though the thought of surgery makes me nervous - I worry about her going under for it) To add more good news, she was told she doesn't need to go to her Friday dialysis appointment either!

Day 27: Status and updated wound pics

Mom doesn't have to go to dialysis tomorrow! I'm not sure what her schedule is going to be going forward, but she's able to skip tomorrow, so that's good news! This should help her "wonky" heart. Her urine output is pretty much at "normal" levels, so we're hoping this means they can cut back on dialysis or stop it altogether. Baby steps! I'm adding her pic from this last summer, just so there's a picture in the share of the post that isn't a wound pic. ;)

Day 26: Wonky heart

Mom doesn't seem to be handling dialysis very well. This time, she felt her heart start to get wonky (her term - means it was racing, but not to the point of a-fib), so she was able to say something to the dialysis nurse. They're monitoring her super close while she's on dialysis, so it's not a lack of attention at the clinic. They also aren't taking much fluid off of her, since she's urinating quite a bit now - today they added fluid to her. Dad bundles her all up, because she gets so cold going to/from the dialysis clinic and puts a mask on her to keep her air warm. He took a picture for me to share (cracked me up when I saw her):

Day 25: Adding new issues to the list

We just found out that mom has a thyroid issue now. She found out after mentioning her worry about her hair falling out so bad lately. The nurse said it was related to her thyroid problem and was a little curious why mom didn't know about it. There are probably going to be a lot of these to pop up in the near future. We'll just add that to the list of the issues she has now. 

Day 23: Exhaustion is setting in

Mom is absolutely exhausted after her day today. She got discharged from the Bryan Hospital and went to her regular Friday dialysis in Bryan, then she was transferred back to the Montpelier Hospital for rehab again. It was a whopping 2 degrees out when dad was transferring her between the car and the facilities in Bryan, so the cold is really taxing her too. Her heart still isn't cooperating (still irregular and pulse is higher than they'd like), but she's resting now. I'm not sure if her meds get stripped out of her system when she goes to dialysis, that's a question dad is going to ask the doctor when he sees him next.

Day 22: A little more drama

Mom is still at the Bryan Hospital. They got her heart settled down to normal, but now she has a low-grade fever. They're concerned about an infection, so they've done cultures and are keeping an eye on her overnight. Tomorrow morning, she will go to dialysis in Bryan and then should be heading back to the Montpelier Hospital for rehab. I have no idea what's going on with insurance and if they're going to allow her to go back to the rehab facility. They tried to put the paperwork through, but the insurance system was down, so they'll try again tomorrow morning. Right now, we're playing it by ear.

After talking to the HR lady at mom's work, they're going to assign somebody to be an advocate on mom's behalf. Hopefully, this will help us a bit with the insurance situation.

Through all of this, mom is still chipper as can be and sent me this selfie for use in this blog post. Isn't she cute?

Day 21: Drama mama is back!

Well, it's been an interesting day for mom.... she froze her tail off to and from dialysis. She started to feel a little "funny" while she was there on dialysis, but figured she was just overly tired and cold. When she got back to the hospital in Montpelier, she really wasn't feeling right, so they checked and her heart was racing. They think she's getting back to atrial fibrillation, which should be easily controlled by meds, but they need to keep her monitored just in case. So... they moved her to the ER of the Montpelier Hospital to get her on some monitors. They were going to transfer her back to Parkview in Ft. Wayne, but the roads are really horrible right now, so they're sending her to the Bryan Hospital instead.

Day 20: Add a Heart Attack to Terrible Thursday

So, it turns out that during "Terrible Thursday", mom also had a heart attack. This did not happen today, but on 1/29 when everything else was going down. Mom and Dad just found out about it today when somebody looked at her chart and mentioned it to them. It was an NSTEMI- Non ST Segment Myocardial Infarction. You can click on the link to see more information about this type of heart attack. I'm not certain what it means for her, other than she will continue to see a cardiologist and will keep taking baby aspirin every day.

Day 19: Not for the faint of heart

Mom had her first dialysis at the new place in Bryan. Thankfully, they transported her for the first treatment, after this, dad will be driving her there. She said it was the best one yet, now that she's getting stronger, it isn't making her quite so tired afterwards. She's not allowed to drink water, because of the amount of sodium (?? - it's what she was told), but she can have juice.

Day 18: We're getting there!

This is going to be kind of a short blog post, since I'm not up there with mom to get all the information about what's going on. I'm also depending on my dad and my sister to send me pictures. It's really hard not being in the middle of it anymore, since I had been there in the thick of things for the past 2.5 weeks. You end up feeling a little lost and not sure what to do with yourself once you go back to the real world.

Mom is absolutely loving her new digs at the rehab facility at Montpelier Hospital. She also took her first shower since all of this started, which is exciting news! They also were able to add a kind of rack to her bed to keep her blanket from resting on her feet when she sleeps. Christy sent me this picture after seeing her this afternoon.

She is finally able to produce some urine now, which is actually pretty huge news! We're hoping this means that her kidneys are starting to function again. She goes to dialysis at the center in Bryan for the first time tomorrow. They're going to try to do her therapy sessions before she goes to dialysis, since she'll be too exhausted afterwards to do it.

Oh, she was able to eat her cereal with a regular spoon this morning - not using the tube utensil holder.

Day 17: A Step Closer to Home

Last night was the first night mom spent in her new place in Montpelier, OH.  She slept really well, and doesn't feel like she needs as many naps anymore.

She had her PT evaluation at the rehab facility today. In the category of "big relief" after our up-and-down rehab facility tour, Mom absolutely loves this place! They agreed with me about having to hold her back rather than pushing her forward, to keep herself from pushing too hard and potentially getting injured. They have her doing breathing exercises every hour and are taking great care of all those crazy wounds on her hands and feet (blisters, dead tissue, etc).

They are configuring her diet specifically to what she needs for her renal, cholesterol, blood pressure, diabetes, and gluten intolerance issues. She's feeling amazing there! The dietician is doing an amazing job of providing tasty food that works for her. They've also put her on a probiotic, since she's still on a suppressive antibiotic to fight that darn bacteria in her kidneys.

Exciting news/progress, she's able to pick up her new kindle (the voyage), turn it on, and turn the pages. Just a few days ago, she was struggling to turn the pages, much less focus on the words and absorb the book.  She's once again able to read books that make Jon blush whenever he opens his Amazon account to the "recent purchases" section of our shared account!

Day 16: She's being discharged!!

It's mom's 16th day in Parkview Regional Medical Center and she's getting discharged already! It doesn't seem like she's been here that long (however, it feels like I've been in this hospital for at least a month)... I was going back through my pictures and found this shot I took of her monitor when she was in here on "Terrible Thursday".

Guest Blogger!

I'd like to welcome my guest blogger.... my mom!!! She got very emotional while she was dictating this to me and had a hard time getting it all out.

Day 15: Look who's walking!

No more baby steps for this girl, she's taking giant leaps! She was concerned that the therapists were going to be pushing her to improve too fast, but she's amazing the therapists with how she's pushing herself. Mom was also worried that she was going to get addicted to her pain medicine, which they assured her that she's fine. She ends up being in more pain than she needs to be in, because she's trying to "tough it out" and take less meds. I think the nurses, therapist, and I have talked her into taking the meds she needs.

Day 14: Ugh, touring nursing homes

So, our adventure today was touring nursing home facilities for short-term rehab for mom. The one place we went to was a depressing nursing home that looks like it's where people send their really old relatives to go to die. I didn't see any young people there at all and everything they had was out of date, plus shared rooms and a shower you have to schedule, because everybody uses it. No thank you. Then those folks from the nursing home randomly showed up in mom's room this afternoon. She wasn't pleased with their smarmy car salesman style personas. Ick. We also toured a local hospital that has a short-term rehab facility, which we liked WAY better than the nursing home. Newer equipment, nicer "normal" acting people and a more "rehab" type therapy program.

There isn't whole lot to post about today. Therapy was here watching mom eat her lunch to see how she was doing. She's pretty much feeding herself now, with the exception of us cutting up anything that isn't already in pieces. She had an easier time standing up for therapy and moving around. It certainly isn't easy yet, but she was able to have a slightly breathy conversation with us while she was standing. That's an improvement.

She had dialysis this morning while we were running around touring facilities, then had her visit from therapy. Now she's tuckered out.

Day 13: Videos and status

Now that I'm away from the hospital wifi, I went ahead and got the videos uploaded to blogger so you can see.

Keep in mind, it's difficult to watch, because it's so hard for her to control her hands yet. She doesn't have much feeling in her fingers from the first knuckle to the ends (and the skin is very tough, almost leathery or if you had a bad burn).

Next step: running? (j/k)

Mom has had a busy last few days. We got her the blocks I mentioned in a previous post. I took a video of the first time she did it, which is pretty hard to watch - her fingers just aren't working that well for her. The right hand is too curled/clawed (therapy is working with her on that) and she can't feel her fingers from the middle to the ends. This morning was the second time she had done the activity, but she was able to do almost all the blocks in the same amount of time she did two in the first video. I tried to upload videos of it, but the wifi here won't cooperate with me.

Day 12: Adventures in Nurseland

Mom is calling me her tour guide now. The 2 nursing students from IPFW who were in the hospital working on mom tonight mentioned to the other students that they were working with "the miracle lady". So, the whole crew visited her room to hear her story. The picture of the crew is about 4 or 5 students short, we had more visit after I took it. Mom looks kind of yellow here, but it's the lighting in the room.

Sleep, who needs sleep?

Ugh, mom is sleeping only about 4 hours a stretch, so this is one tired daughter blogger here.

The plastic surgeon came to see mom this morning. He popped in the room, looked at me, looked at mom, then said, "Uh, I think I have the wrong room." I questioned him about whether or not he was sure. He apologized and assured me that he was in the wrong place. (mind you, I recognized him from the last time he was in her room in the ICU) He told me he was supposed to see a patient with the last name Brown. Uh, yep, right room. He was absolutely astounded that he didn't recognize mom as she was sitting in her bed, eating breakfast. When he was in to see her on Friday, she still had tubes all over and looked like a different person. He basically cleared her to do anything therapy wants her to do: she can walk on her feet, shower, anything! Still not sure what's going to happen with her fingers and toes, but they keep saying "time will tell". Today, she's in less pain and has more itching, which sounds like she's starting to heal.

Day 11: Everything is Awesome...

That's our theme for this week (we also watched part of The Lego Movie) and mom keeps saying it, which is.... awesome. I have worked on this post all day, but since we were busy pretty much all day, I didn't get a chance to finish it until now.

For a person who was just barely able to lift her arms a few days ago, she's pushing herself to improve so much! This morning's breakfast included a V8 (small can size). She's able to hold onto it with both hands and get it to her mouth, without taking a bath in V8. We got some tube things that can go around the silverware to help her hold them, so she should be wearing her food in no time. :) (she's reading the blog now, so that should make her laugh)

Day 10: Drama and Status

Day 10 in the hospital, downgraded to Stable Condition... and a long road ahead of her. I said in this morning's post that she's out of the ICU, we're just waiting on a room to open up on another floor.

We had a little bit of drama today! We left Carrie (here doing some reiki) alone with mom, the speech therapist and Tara (our dialysis nurse)... Christy just had to go to the restroom, so she wasn't gone for long. They shifted mom up in her bed because she was slouching, and then blood was spraying all over the room. Her dialysis catheter popped right out of her chest, it apparently looked something like a murder scene in there! The speech therapist freaked out a bit and scrambled out of the room (I can only assume she doesn't normally see blood in her field). She'll be getting a new catheter "installed" soon. I wasn't here for all the drama, I just got to hear about it. AND, I missed seeing Tara. Boo. ** Side note, she stopped by to say hi. :)

Our nurses... We love you guys!

I don't have a way to link to show all of our nurses we've had, but we have absolutely loved all of them. I can't even guess who all was in her room when we were here on "Terrible Thursday", I just know it was a lot of nurses and doctors. We can't say enough good things about all of them and we're going to miss them when we move to another floor.

With healing comes frustration...

So, mom is able to talk to us (more of a weak whisper, but we can understand what she's saying), but her hands aren't doing what she wants them to do. She is very frustrated with her lack of coordination and inability to have fine motor skills. We keep trying to tell her that just yesterday morning, she was barely able to lift up her arms and couldn't move her fingers. Today, she's able to grip our hands, move her fingers, and has way more movement in her arms. She finally got a good look at them and says they look gruesome. In actuality, they look way better than they looked before, but the tips of the fingers on her right hand still look like she had frostbite. She says she's in quite a bit of pain, and with her pain tolerance, that means she's in a LOT of pain.

Day 9... it's only been 9 days??

It feels like we've been here for a month. Holy cow.... the doctors are convinced mom is a medical miracle. She's exercising like crazy (moving her arms and legs, squeezing her hands and opening back up) to try to get stronger and she's getting some really great (and productive) coughs going. Physical therapy came in and had her get into a sitting position, which was really hard on her and she can't put her feet down at all (both feet had huge blisters covering them on the bottom, now bandaged after debridement).

The tube is out now!!!

Holy crap, best day yet, the tube is out! 

Sorry yesterday ended on kind of a downer post, it was so difficult for us (and mom). It was a long frustrating night of trying to understand what she was trying to tell us. Mouthing around the stupid tube, trying to point to the communication board.

She was on a breathing trial all morning while she was on dialysis. You should see my Wonder Woman mama.... she's been in here doing all kinds of exercises with her arms, hands, and legs: lifting her arms, flexing her hands and feet. She even raised her head up to get her hair washed. She is doing an amazing job of trying to get strong...

Anyway, kind of a short blog post, but I wanted to get this out there. So freaking excited for her!

For your funny for the morning, this is the communication board.... I think the "I feel sick" box doesn't quite like what they're going for. lol 

Day 8: Good lord this is rough...

Mom's fentanyl drip (pain medication) is down to 65 now (she had been up to 150) and she's still comfortable. But now she's more awake and trying to communicate with us. She has that blasted tube in her throat still, so we can't read her lips. At all. The nurses gave us a communication board, but frankly it's a little ridiculous what they have on that board. Christy bought a board for her iPad, so we tried it that way (rows of letters, asking her which row and then which letter). We got to K-I and the second row (where there's an L), then we both had a panic attack when we thought trying to say "kill me". She clearly shook her head "NO!".  Jesus... you should have seen the look on our faces when it occurred to us that she might be trying to say that!

This is probably the most she's been awake in the last week, so she's getting tired and SOOOOO frustrated with us right now. I seriously hope that darn tube comes out tomorrow.

Eye opening moment for the day: Dr. Israbian said that she had less than a 5% chance of survival last Thursday. She's come a really long way since then, but she still has a really long road of recovery ahead of her.

Positive news: she is able to move her arms around way better now. She isn't able to grip (she wanted to try to write, but that didn't work), but she did try to point to the letters on the iPad. She can very slowly raise her arm and try to point to the iPad, but it takes a while for her to do it.

Funny moment... One of us (won't say who) farted while standing next to the bed, then apologized for doing it right next to her, laughing. She actually smiled around the tube.... or maybe it was a grimace. I'm going with positive: it was a smile.

Way better Thursday than LAST Thursday

Fair warning, this is going to be a little more technical blog post.

It's been one full week since "Terrible Thursday".... Mom has come so far since that horrendous day.  Her platelets are starting to come up, they're up to 46 now (at one point, she had been down to 12, which is really bad). She needs to be at 50 before they can do the thoracentesis. Her white blood cells have actually DECREASED from yesterday, down to 47, which is amazing news. I don't know if it's from getting rid of the blisters, but we'll take it.

Can you say creepy much?

This hospital is so high tech, they're letting SkyNet inside... They have these automated machines that are supposed to sense where people are and avoid them, yet take their loads wherever they're supposed to go. They are called "tugs" that carry food, laundry, or trash.

These machines look like they're watching you and appear to chase you down the hallway, instead of avoiding you. It's creepy as all get out. My sister is freaked out about them and will go down the other hallway to avoid one. I'm waiting for one to peek around the corner into mom's room, looking for her.

Day 7: A light post to end the night...

We were trying to get mom to open her eyes so she could focus on us when we were asking her a question about her pain. She's on a lot of pain meds right now, so it's harder for her to wake up. She kept raising her eyebrows up instead of opening her eyes. When we told her not to raise her eyebrows, open her eyes, she finally did it. Good attempt, mom.... She was able to move her hand a little when we asked her to try to squeeze her hand (still very swollen, so hard to move them much).

Here's hoping tomorrow goes smoothly. We aren't sure when they're going to be taking the tube out, but I think they're going to do another breathing trial tomorrow. She needs to be able to follow commands and cough when they tell her to.

That's it for now...

Day 7: The amazing doctors who have been caring for our mother

Here are a few of the amazing doctors who have been caring for our mother. (you can click on their names to pull up their bio/page for the hospital)

Day 7: So, our dialysis nurse reminds us of Melissa McCarthy

And she's just as amazing and funny as MM is - we're hoping to get her again tomorrow, we liked her a lot.

Mom is on Hemodialysis now (which is regular, standard dialysis) and they're taking more fluids off of her while cleaning her blood. Here's the amazing machine, along with her IV pumps:

So, the "shudder factor" of the morning is that the plastic surgeon came in and popped all of her blisters and now look SO utterly painful. They have turned up her pain meds, so she's comfortably sleeping today - all of us are A-OKAY with that plan. No breathing trials or extubation today, just letting her heal up a bit.

The infectious disease doctor came by to check on her and woke her up to see how she responds. She isn't able to move either arm or leg, but she was able to move her fingers just a little tiny bit (trying to squeeze her hand - they're still super swollen). When the doctor asked her if she could close her eyes, she very purposefully squeezed them shut and then opened them. Tears of joy, we think mom is still in there.

The CT scan didn't show any abscesses, but did show she has some gall stones (nothing to worry about) and that she does have pleural effusions (which means fluid around her lungs). Her platelets are coming up a little bit (42), but they need to be over 50 before they can take the fluid out from around her lungs (thoracentesis).

It will probably be a "slow" information day for us, since not a whole lot is going on here. Please keep the positive energy coming!! We'll take anything we can get: light, love, prayers, thoughts, magic juju, whatever!

Day 6: End of the day update

Mom is now off of the continuous dialysis machine and will now be getting conventional dialysis for 4 hours every day or every other day, depending on what she needs. Now that she has pain meds again, she's been sleeping a lot, which is good. I can't even express how hard it was seeing her struggle. Positive note: she's able to respond to us by nodding her head and blinking her eyes when we ask her questions. She hates the tube in her throat, she's in pain, and she's pissed that she's in the hospital. (no surprise there)

They brought in a nurse from Skin and Wound care for the blisters and her fingers/toes, but mom is way worse than she can deal with. They're going to be calling in plastics to look at her - not sure when they'll make it up here. I know we waited 2 days for Skin and Wound to get here.

She did go down to get a CT scan of her chest and abdomen to look for abscesses or anything else that might be causing her white blood cell count to be so high. Here's a shot of her being wheeled out for her scan.

Day 6: Status: still critical

I know our posts lately have been pretty happy, but our mom is still in critical condition. She will definitely be intubated until at least sometime tomorrow. They took her off of her sedation and her pain meds completely when they let her try breathing on her own. She was able to open her eyes and look at us, but she can't move her arms or legs for us when we ask her to. We think she's in a lot of pain, because she was grimacing and gagging on the tube. Thankfully, they put her back on some pain medication and she seems to be resting a little better.

Positive news:

• Her EF is 55% now, up from 35% on Friday. (effectiveness of her heart pumping, this is in the  "normal" range now)
• She was able to breath on her own for almost 4 hours, they put her back on the vent to let her rest
• They're feeding her
• She was able to look at me when I talked to her, then look at Christy when she talked to her
• They are having therapy come up here to start moving her arms to get her moving again
• Still taking fluids off of her and she's looking way better

Right now, the concerns are:

• Her hands and feet: her fingertips, nails, and toes on the right side are the worst - they're almost black, we still aren't sure if she'll lose any of them
• She has a lot of blisters all over her skin, they need to have a wound care doctor come in to take a look at them and other places where she has a lot of bleeding
• White blood cell count doubled since yesterday, they're trying to figure out why this is happening
• Her platelets are still really low
• They need to do an ultrasound on her lungs to see if there's too much fluid around them and might need to do a thoracentesis, but they can't do this until her platelets are at 50 or higher.
• She needs an ultrasound on her arms to check for clots
• She needs a cat scan to check her chest and abdomen 
• They're concerned about the placement of her nephrostomy tube, they're not getting much out of her kidney anymore
• She is still on continuous dialysis and they need to try to switch her over to a more standard dialysis machine (4 hours every other day)
• Still not making any urine

She is still in very critical condition and not out of the woods by any means. Yes, we've had a lot of positive progress, but it's still a very scary situation. It's so much harder for us now, trying to comfort our mother while she's struggling and panicking with the tube in her throat, gagging. We know she's confused and in a lot of pain.

Please keep positive energy coming our way!! Thank you so much for your continued thoughts and prayers, we appreciate every one of you.

Day 6: Holy Medical Miracle Batman!

Mom is yet again pushing herself to get better.  They're doing a breathing trial this morning, so they turned off her sedation, pain meds, and her ventilator.  She's breathing on her own and has been opening her eyes.  We put her glasses on her so when she does open her eyes that she can actually see and focus on us.  They may turn her ventilator back on so they don't exhaust her, but the doctor said if it doesn't come off permanently today that it would most likely be tomorrow.

We don't know if her fingers and toes will be okay, time will tell there. They are still drawing excess fluids off with the dialysis machine so her puffiness has decreased a bit. However, she still has a lot of fluid blisters all over the place, which don't seem to be improving much as the fluids come off.

All in all, she's doing fantastic and keeps making improvements every day.

Powerful image of how bad things were Thursday

Our Aunt Judy (mom's sister who flew in from North Carolina Thursday evening) took this shot of 2 of the nurses (Mary and Keri) caring for our mom and all the bags of medicine/fluids they were putting into her. There were so many nurses and doctors involved with keeping her with us that night. We still keep meeting new nurses on shifts in mom's room who were there and are so happy and amazed to see her. I love this place and I can't say enough good things about the ICU nurses and the doctors we've seen (we have seen a LOT of doctors).

Our mom....

Day 5: Miss Alice the Rock Star

Good news!  She's just rocking it out in trying to get better.  They lowered her PEEP (pressure for the ventilator that keeps her lungs inflated) multiple times today.  A healthy person has a PEEP of 5 to keep their lungs from collapsing.  She started out at 12 this morning, but they have gotten her down to 5 and she's doing very well.  They are hoping to start some breathing trials tomorrow! They had stopped lowering her Dobutamine (last blood pressure med) dosage at 5 but have now progressed to lower it to 1. If she is still tolerating it well by tonight, they will pause it and see how her blood pressure handles being off of the medicine.  I'm telling you, this lady is one strong woman.

The kidney doctor also stopped in and said that her lactic acid levels are looking really good (we aren't really sure what that means, but it sounds good!). When it's time to change the filter cartridge on the continuous dialysis machine, they want to take her off of it and start using a conventional dialysis machine for 4 hours every other day.  This is fantastic news!  They've also started feeding her some nutritional substance which I will liken to gruel or thick baby formula (though we've been calling it Soylent).

All in all, she's made quite a bit of progress today.

Day 5: A new doctor came to visit us

The hematology oncology doctor came in today, because her platelets are low and her white blood cells are elevated. They're not sure where the infection is, so they've cultured her urine, blood, and sputum. The only place they found bacteria was in her urine. We're still worried about her fingers and toes, they look pretty bad. The septic shock combined with the vasosuppressors apparently doesn't mean good things for your extremities. 

Slowly moving forward and making baby steps. We get excited every time the doctors mention something out in the future.

Days 1-4: Overview of how all of this started with our mom

Mom started having what she called "back spasms" Tuesday (1/27) and took a sick day on Wednesday, because she was vomiting and had diarrhea. The last message I had from her was, "I have the stomach flu. I had spasms in my stomach, lower back, hips and thighs. Didn't sleep much at all last night. I feel better, but still haven't eaten anything today. My whole insides feel like they are bruised." 

She went to bed that night at around 9:00 and then fell out of bed around 11:00 - if she hadn't, dad wouldn't have known that she was in such bad shape. He got her to their local hospital where they determined she had kidney stones and a BP of 58/33, so they transferred her via helicopter to Parkview North in Ft. Wayne, IN. She was checked into the ICU in critical condition.

Thursday morning, Christy and I both talked to her on the phone, she was sitting up in bed, reading and getting on some good pain meds. Around mid-morning, she started struggling to breath and had to be intubated and sedated. Her one kidney has 2 large stones in it, which are spiky and tearing up her kidney from the inside. The other kidney has small stones and became blocked, which combined with her bladder infection caused a "perfect storm", making her go into septic shock (don’t google it like our dad did). When they stabilized her as well as they could, they took her down to radiology to put nephrostomy tube in to drain the gunk off of her kidney.

Thursday was by far her absolute worst day. That night through Friday early morning was when we thought we were going to lose her.

When they were hooking her up to the continuous dialysis machine, her body wasn’t handling it very well at all. They came to get us from the waiting room and asked if we wanted them to get a priest or a chaplain, because they thought she wasn’t going to make it. I’m not sure how she was able to hang on, but she did. They got her going on the dialysis machine and kept her heart beating.

They ended up putting her on 5 different vasosuppressors to keep her blood pressure up and they were all maxed out. The doctors told us they were up against a wall and couldn’t do anything else to keep her pressure up. And she had gone into DIC. Fortunately, she was able to pull through and they’ve been slowly weaning her off of the pressors. She’s down to 1 medicine for her blood pressure and they’re working on weaning her off that one. It’s helping her heart pump, so they want to be careful with it. When she had her echocardiogram, it showed that her heart was only 35% effective (normal is 55% or higher).

Mom is on 2 strong antibiotics to fight the infection in her body. They are still pumping platelets into her, because her numbers have been really low. We’ve had just about every kind of doctor in here working with her and after the nurses rallied to try to save her Thursday night, we know most of them as well. This hospital has been nothing short of amazing – the folks here are so wonderful. 

She is still in extremely critical condition and needs your thoughts, prayers, light, juju, or even fairy dust. Any positive energy you can send her way is appreciated.