GREAT NEWS!

Mom will be released from Pacific Specialties in three weeks or so!

The plan is to have her and Dad move back to their house in Bend for a few months, then they will probably move to an assisted living facility close to us here in Portland.

There is a little work to be done to get their house ready, but we are all very excited. We are looking into getting some additional nursing or home care - at least someone stopping by daily to check in.

The staff is pushing her to spend the next few weeks living there as if she's at home: bed flat all the time, can't use the bars to help her get up from bed, resist using the nurse call button, administer her own meds as necessary, etc.

Mom is barely using her g-tube and eating all her meals normally. They have only been using the g-tube to give her some formula after meals to help stretch her stomach. She will probably have it removed completely after she gets to Bend.

Her physical therapy will continue after Pac Spec. We anticipate her strength and endurance will continue to grow and her fatigue to lessen.

More great news: Mom will be coming over to my house to spend Christmas morning with us. She'll stay as long as she feels up to it, although I'm sure the kids will wear her out quickly. We are excited to have her out on this fun 'field trip.'

Happy Holidays

Things are continuing to go well. Mom has recovered from an infection and a little cellulitis, which was caught fairly early and not at all as bad as past infections. Throughout that recovery, she was active and keeping busy. She's in good spirits and getting stronger and stronger.

Her voice sounds much better, as her throat continues to recover from all the irritation from tubes being down there for so long. She's also eating a lot more and getting a lot less formula through the peg tube. She's taking most of her medications via mouth instead of tube now too.

PT keeps pushing her along, too. She's been practicing her balance and rotating with out any assistance or walker (no hands). She's walking longer distances with the walker. Her endurance also continues to improve in all her exercises in the rehab room.

OT made her go down to the employee break room and make a pot of coffee. She said she put in an extra scoop and it was too strong. I'm sure she'll be happy to do it again until she "gets it right." They also took her down to one of the computers so she could play a little solitaire.

She's still knitting, doing crosswords, and passing time watching more TV than she ever has before.

She enjoys your cards and letters. Thank you so much for keeping them coming. Your love is helping her get through. Thank you for your thoughts and prayers.

Mom is doing very well. She's recovering from surgery; still has some pain but that's understandable since she's not taking much pain med (doesn't like the side effects).

She was a bit tired yesterday, but weathered through some PT (walked with walker down the halls and did more strength building exercises) and was sitting up in her chair when we visited late-morning.

The staff at Pac Spec has been very attentive and considerate. Seems like they still may need to work out her tube-feeding schedule so it doesn't conflict with her meal schedule - she's just not hungry enough to eat much solid food.

G-Tube Surgery today

Looks like my post from last week didn't post. Things continue to go well for Mom. She continues to get stronger and build her endurance. She uses her walker and is able to travel longer and longer distances on foot. She has a new wheel chair - much more comfortable, she says, so she is able to sit up for longer periods of time. PT is going really well. They have her doing more standing exercises and more variety on the machines.

Speech therapy is also going well. She's regularly eating soft solids at every meal, without assistance. Also, she's drinking liquids of all thicknesses unsupervised.

G-Tube surgery was this morning. I just got a call from the surgeon who confirmed that it all went well. No challenges or problems. They are keeping her in the hospital overnight for observation. She is thrilled to have the tube out of her nose finally.

The up-swing continues

Mom says she's feeling the best she's felt in the last 10 months. She seems very strong and is doing very well.

She continues to push herself during PT. She walked the length of her room (about 12 steps) using her walker, rested, then continued down the hall another 10 steps or so. Longest walk so far.

She has started complaining about being bored - a great sign, I think. She's actually enjoying watching a little TV; she has finished every crossword she has so far; and - most importantly - she is knitting again (slippers).

On Thursday we had a consultation with a surgeon to install a G-Tube. She is looking forward to getting this done. The tubes down her nose/throat cause her so much irritation and are hindering her eating solid foods. It will be more comfortable for her all around. I hate for her to go through the procedure and have one more thing to recover from, but the benefits far outweigh the temporary discomfort.

We may be possibly seeing the scant beginnings of a dim light at the end of this long tunnel. Maybe. She still has some milestones to overcome, so who knows what might still happen while she's staying in that facility. No one will even try to speculate on how long until she can go home, but she is motivated and eager to get there.

On the mend again

Marlene's journey has a lot of ups and downs, as everyone reading this blog knows. This week it's been on the upward swing.

Since Kristin's last post, Marlene has rallied again. Her lab results showed the infections have cleared. They've cut back on her painkillers, we think. At least they were supposed to. We have to look at their records. Kristin, Bob, our HAS advocates and a number of PacSpec personnel had a meeting last week to re-jigger Marlene's care plan, and so far so good.

Kristin has seen her behaving differently, and she seems to be responding well, is more awake, and had a really great conversation with Kristin last night. She was able (with help) to sit up on her bed with her feet on the floor several times, resumed her physical therapy, and had gone out into the autumn sunshine (in a chair) and enjoyed the colors of the trees quite a bit. Margie, the RN from HAS services, has been visiting with her regularly, as has Kristin. Bob has been shut down with a bad cold, so he's not allowed near the place. It's frustrating and boring for him, although he's been doing a lot of activities with the kids. They already have colds, of course- no harm no foul! We hope that once again, Marlene can move forward. Her next big hurdle is eating on her own. She is still being fed via the NG tube, and her digestive system and swallowing capabilities have to recover properly, and of course real food is way better than tube food. We're keeping our fingers crossed once again that she keep going forward, without the hindrance of infections, and hope y'all will do the same.

Tom

Mom continues to improve. She still needs a lot of rest, but she's doing OK.

rough time

It's been a difficult few weeks. As she was recovering from pneumonia, she aspirated on applesauce (nurses didn't prep her for eating like they should have), she went to ER on Friday 10/7 for more x-rays and tests. She went back to Pac Spec with antibiotics for UTI and aspiration pneumonia. Lab results came back on 10/10 saying she had a drug resistant ecoli (!). Although its very serious, it is apparently very common for women in nursing homes who have been on antibiotics and have UTI.

The meds she was given made her alarmingly confused and mentally altered (hallucinating, trying to leave, pulling out feeding tube twice). After two or three days she started to show improvements.

Additional tests are showing no growth and she hasn't had any fevers or temperature spikes.

She continues to improve and is even looking forward to getting some physical therapy today.
I know she is so tired of being in a nursing facility away from home. She is really wants to get home.

Please help us encourage her to stay strong and motivated so she can get home soon.
Thank you so much for all the birthday cards, letters and wishes. We greatly appreciate your love and kind words.

getting better

Mom continues her recovery from pneumonia. She seemed to be doing really well last week, but maybe she overexerted herself because she was very tired and sick Friday through Sunday. She's improving again, but still not up to doing any PT. It frustrates her that she's not feeling up to PT, which I take as a good sign that she's motivated to get better.

Which reminds me, she's also having vivid dreams that she swears are real. In one dream, they were having a $64 bottle of champagne in the hallway outside her room and she was yelling for Dad, me, and the aides to help get her out of bed because she couldn't move and she wanted to get out there. Sounds like she is very mentally ready to move on and join her life again.

Speech therapy is going well. They've been working on her swallowing and getting her to tolerate more solid foods.

pneumonia

Day 3 of pneumonia, recovering and resting well.
For as long as she was on the vent, I'm surprised she hadn't gotten it sooner.

Neurology

Mom had another neurology appt. where they did an electrical test on her feet/legs -- testing to see what sort of permanent nerve damage has been done. I think the staff at Pac Spec doesn't think she's making quick enough progress, but as we've all learned Mom has been recovering at a steady yet slow pace. There's definitely still some nerve damage in her feet (towards the toes), but none of it is permanent. Those are the longest nerves in the body, so it makes sense that those are taking the longest to heal. As long as she keeps up the PT and movements, she should continue to heal. The doctor even noticed her progress in the 5 weeks or so since he saw her last - not just in her breathing, but nerve/movement in her feet. ....proving again that her recovery rate is still very slow and steady.

She is continuing to work on her oral food intake. I think her trach is still healing and the feeding tube is still down her throat, so it is uncomfortable for her to swallow and not feel like she's going to throw up. Once the food travels past her throat, she's fine.

all good

Mom is doing just fine. Her voice is getting stronger. Her trach is healing.
For PT they've been taking her down the hall to the rehab room where there is a lot of equipment, machines, activities to help build strength. She took 5 steps on her own on the "parallel bar walkway."

Decannulation

Mom's trach was removed yesterday afternoon! She's doing fine.
It makes me a little nervous to have it removed, especially since she hadn't reached their goal of 48 consecutive hours capped and she's been so tired this week, but they seem to think she was ready. She's taking it easy this week while she gets used to her new breathing situation.

Mom is plugging along just fine. They are pushing her hard to be capped for 48 hours. She was up to 11 consecutive hours on Thursday when they said they were going for the full 48 hours starting Friday. She made it 27 hours and had the cap removed Saturday afternoon. That was a big push and Mom did very well, although she was pretty exhausted by the end of that stretch.

steady progress

Everything is continues to progress. They cap her trach for a few hours everyday. They are up to about 9 hours a day capped. When it's capped, she breathes like normal through her nose. They give her a little extra oxygen, too. Once she can tolerate 48 consecutive hours of being capped, they will determine when to remove the trach completely.

She talks very well when the trach is capped.

They are helping her get herself dressed everyday.

She continues to try to eat different pureed foods. It's difficult with the feeding tube going down her throat...it increases her natural gag reflex and doesn't allow her to eat as much as she probably could. They are very good about balancing that with her steady progress.

Dad, the kids and I were there yesterday when PT arrived, so Mom got to show off a little. We got to watch her sit up, work herself to the edge of the bed and then stand up...all with minimal assistance. I haven't been around when PT is there and it was WONDERFUL to see her move so well and be so strong.

Best news ever....

Mom has been off the vent 24 hours a day since about Friday! She's doing great.

They reduced the size of her trach, too. If all goes well with that they will cap the trach tomorrow. This blocks off the airway and makes her breath around it.

On Thursday, the doc will assess her progress and determine when they can remove the trach completely.

Also, they are trying out solid foods. She successfully ate three teaspoons of chocolate pudding.

She is still making steady progress with PT and OT: practices log rolls to sit up in bed, puts a lot of effort into moving from the bed to the chair and even takes a few steps on her own in the process. She will be getting herself dressed daily and they will work in other "everyday" habits to get her back to doing normal things.

Mom had a mellow weekend. We visited with the kids on Saturday and Mom was going on her 6th hour off the vent. Usually my visits with the kids are pretty short because the kids are too rambunctious. This time we were able to stay for quite a while and Mom wasn't fatigued at all (well, much). The kids were crawling all over her bed, too. I was very impressed.

I haven't heard how long she was off the vent on Saturday night. Sunday morning, she went for another 6 hours or so.

Care Meeting

We had a care meeting with some of the staff today at Pacific Specialties. Mom was off the vent and using her Passy Muir valve, so she could talk and participate fully in the conversation. And she talked quite a lot. She sounds great. It doesn't completely sound like her, still raspy, but definitely functioning and very helpful. It was a joy to hear her talk and get her direct point of view about her care there, what she likes, what she needs, etc.

She has been doing 8 hours off the vent each day (4 hours in the morning and 4 hours in the evening). I think they'll keep it at that level for a few days before they increase the time again.

PT has been very impressed with her and her progress the last few weeks. She's been sitting on the edge of her bed unassisted for up to 35 minutes at a time. She has been needing less assistance going from the bed to the chair and back (no more hoisting mechanisms, just her own strength/movement with the help of 2 aides).

progress report

7 hours off the vent on Friday (4.5 hours in the morning and 2.5 hours in the evening).
Stood up for 30 seconds, moving from the chair to the bed (assisted only for stability).
5.5 consecutive hours off the vent on Saturday - longest stretch so far!

Speech therapy continues to work with her 2x a week or so. Her voice is getting stronger and smoother.

Doing great!

Visited Mom last night. She spent 3.5 hours off the vent yesterday, no problem. She told me that on Monday in PT they practiced standing up and she was able to stand up/sit down three times in a row!

4-6 hours off the vent!

It's been a frustrating AND exciting week. I'll skip right to the good stuff:

Mom is doing very well and making tremendous progress in her weaning. She was off the vent for 2 hours yesterday without any problems or stress. Today she did at least two, but I haven't gotten an update to confirm exactly how long. Her oxygen levels and CO2 levels were perfect and they even did speech therapy with the voice valve while she was breathing on her own.

PT is also going well, but I don't have many details. I know she's been up in her chair everyday for and hour or two at a time.

We've been trying to figure out why Pac Spec hasn't been aggressive with her weaning over the past few weeks, since Mom seems so strong and well. HAS (our advocates) have really helped us communicate with the facility. After our queries, they suddenly interpreted the doctor's notes as needing supervision while she is off the vent. They confessed that they were too short staffed to follow through with the weaning if they had to supervise her the whole duration, which is why she was only getting 15 minutes at a time. Obviously this is completely unjust and negligent.

We offered to help the staff by being present while Mom was off the vent. Somehow, over the weekend, that got interpreted by the staff as "no weaning unless family is present." Therefore, Mom was not weaned at all for a few days. Of course, Dad and I were not contacted about this, nor was any effort made to set up a schedule with us. Actually, on Sunday she was barely visited by an RT at all.

While we were there on Sunday discussing the situation, the RT told us that a few weeks ago Mom was consistently off the vent for 4 - 6 hours at a time! This was the first we had heard this great news and fueled my anger about the lack of communication at this facility. They cut back on the weaning during her bout with nausea a few weeks ago and seemed to never get back on track. The RT couldn't tell me what changed and I had to tell him about the nausea (which fueled my anger about the communication WITHIN the facility). He thought that if he had the support and collaboration with PT and OT, he could get Mom off the vent in 10 days. I recognize that that's mostly his ego/swagger talking, but it definitely shows how strong Mom is and how soon she could be breathing on her own.

Today, they have completely changed their tune and are incredibly friendly, helpful, and apologetic to us and our advocate, Jason. Obviously there was some sort of internal meeting where Mom's case was discussed. The supervisor of the RT team is back from vacation and picking up the pieces of the damage her team has caused with their honestly. They are promising to deliver on all the things we've been asking for for months (care plan, weekly calls/updates of milestones, etc).

We definitely have enough ammo to petition insurance to have Mom moved back to Vibra immediately. We will certainly be filing formal complaints with the state of WA about Pac Spec. Right now, we just want them to do their job and get Mom stronger.

Mom had a slow week last week. She had some nausea during the first part of the week. Then we learned she wasn't getting PT, OT or ST because of "insurance criteria." It was very frustrating, just trying to figure out what was going on and why she wasn't getting her therapies. As you know, we need to keep Mom moving and as active as possible so she can regain her strength. The facility is suppose to call me consistently with updates/progress/news and they still aren't following through.

They are back on track with her therapies this week, thankfully.

She's still getting weaned from the vent. Mom, Dad and I think they could be more aggressive with it than they are and we're trying to figure out a way to make that happen. She's suppose to be working up to 6 hours off the vent, but they seem to just be doing the minimum (15 minutes) each time. They are suppose to be getting her off the vent twice/day and they seem to be doing it only once/day, if that.

Sorry to use this blog as a platform for my frustration, but it's hard to get past it today. The Healthcare Advocates are we hired are helping me with these issues, too.

Please know that Mom is in good spirits for the most part. Her strength and good nature is a blessing. She can't wait to get outta there and get home though. I can't tell you how much she appreciates your cards/letters. Thank you! Please keep them coming.

all good still

I don't have much new to add, but wanted you to know that Mom continues to do well. They are continuing to increase her time off the vent, although I don't know exactly what she's up to now. She's spending more time out of the bed, sitting up or in the wheelchair, some days up to 3 hours. Her PT tennis shoes are getting good use as she builds up strength.

Dad has been in Bend this week catching up on some doctor appointments with his brother, Dewey. It's great to be able to spend time with Dewey. He'll be with us in Portland over this weekend, too.

More Weaning

Mom spent over an hour off the vent breathing on her own. It was the longest stretch so far. Great progress.

She was fitted for a Passy-Muir valve for speech. They put it in Monday when Dad and I were visiting, but it just made her cough a lot. Dad was there yesterday when they tried it again. Her voice was somewhat distorted and strained, but he said it was wonderful to hear her voice again!

She doesn't have it in all the time. We're looking forward to learning what the schedule is for using the valve, how frequently and for what duration and all those details. It sounds like they'll continue to gradually increase it's usage as she grows stronger.

PT is also going well. They have been practicing going from sitting on the edge of the bed to standing up. She still needs to build up her strength in her legs, and this is a great way to do it.

weaning

They are furthering the weaning process by turning the vent off for 15 minutes at a time each day. Then they will gradually increase the amount of time it's turned off each day and let her build up endurance and strength.

They did this a couple times when she was at Vibra, but they had it turned off for longer stretches of time which was a little too aggressive for her at the time.

We're glad they think she's strong enough to start doing this weaning.

back on track

Mom has been doing really well for the past few weeks. No infections or ailments to fight off, so she can spend her energy building up strength. She's getting a lot of PT during the week. I think we're starting to see some progress in the strength and mobility of her torso. It's wonderful. We got her some tennis shoes for her PT sessions, so I'm sure they'll be getting her up more and more.

She's also finally interested in DVD's and audio books. She now has a small portable DVD player that sits on her lap or tray table. They have many DVD's and books/magazines that she can check out to help pass the time.

The staff at Pacific has been very attentive and communicative with us, which we really appreciate. It seems like the staff is finally able to see how strong Mom can be and how hard she can work when she's not fighting off any other ailments. It motivates them to work with her more to keep up her progress (in my opinion).

Working Hard

I wish I had more to update. We are making slow progress in trying to get Mom moved back to Vibra. We are working with a health care advocate who will be a huge asset in this situation.

Mom had a good week last week. She has been alert and more active. Physical therapy has been going well. She sat up on the edge of the bed supported only by herself twice last week. She said it's really tough, but she is committed to working really hard.

G-Tube removed

On Saturday, 6/4, Mom was sent to the ER with severe pain at her g-tube site. It wasn't being held in place properly (probably because she has very weak abs due to the paralysis from botulism) and had migrated. Therefore, they removed the peg tube and she stayed in the ICU at Portland Adventist until yesterday (Thursday, 6/9). She is doing great now, thanks to the wonderful care of the staff in the ICU.

She is back at Pacific Specialties now. We are doing everything we can to find her another facility for the rest of her recovery. Pacific Specialties isn't able to give her the attention and care that her situation requires and her condition as regressed in the time she's been staying there.

We want her to stay healthy so she can get strong again. Please keep her in your thoughts and prayers more than ever.

Thank you!

cellulitis & blue ice cubes

Cellulitis:
The "infection of the soft tissue near her ear" is actually cellulitis. She has some swelling in neck and redness around her trach and g-tube. She was in a lot of pain yesterday, but the antibiotics seem to be kicking in. She's not in any pain today, so far. She was much more alert and active today.

Blue Ice Cubes:
They are trying to get Mom to start eating 'solid' foods soon (jello, pudding, etc). First they need to make sure she can swallow correctly. To test this, they have her chew and swallow blue ice cubes. Then they check her trach tubes to see if they find any blue. They didn't. Mom is swallowing correctly!

Myra and Susanne left for home this afternoon. It was a great visit and we were happy to be able to spend time with them. (thank you again!)

Busy week

Mom is settling in to Pacific Specialties. It's been a bumpy week. On Wednesday, 5/25, she lethargic and unable to wake up. Her roommate noticed that her breathing was short and shallow and went to get the nurse and RT, who turned up the ventilator to help her breathe normally. Tests showed she had unusually high levels of carbon dioxide. By mid-afternoon, although the levels dropped, they took her over to ER at Portland Adventist to be safe. She was there until late Wednesday night. On Thursday she was much more alert, although she was still sleeping more than normal. By Friday, she was doing really well again and went through her normal physical and occupational therapies (and even sat up in bed and stood up with assistance).

On Sunday night she started complained about her ear hurting and today they determined it to be some sort of infection "in the soft tissue near her ear." They've administered antibiotics. We'll be watching it closely. Mom seems to be pretty tired today.

We had a wonderful visit with relatives this weekend. Mom was very happy to be able to spend time with her sister and nephew and niece (Myra, David, Susanne). It's always nice to see them. My mother-in-law and her husband were also visiting and we had a great time with them.

Pacific Specialties Rehab

Mom is moving to the new hospital today:

Pacific Specialty & Rehabilitative Care

1015 North Garrison Road

Vancouver, WA 98664

Phone (360) 694-7501

She had a gastronomy tube put in on Friday at Portland Adventist Hospital. The tube migrated and they had to go into OR and fix it. She was in a lot of pain on Friday night, but much better on Saturday and pretty darn good by Sunday. She even got some PT while she was there (sat up on the edge of the bed). Since she's on a vent, she had to stay in the ICU, therefore her care was stellar this weekend.

We have lots of family coming to visit this weekend: Myra, David, & Susanne Krauland (Mom's sister, nephew and niece), as well as my in-laws, Jane & William Brown. We're really looking forward to seeing everyone. It will be a wonderfully busy weekend.

new hospital

Mom is going to be moved to a new hospital: Pacific Specialties and Rehab in Vancouver, WA. The move could happen as early as tomorrow. Although it's definitely being driven by insurance, we've all come to the conclusion that it's a good change for Mom. They anticipate that she'll be on the vent for another 4-6 weeks, so while she's at Pac Spec she'll get lots of good PT and OT to build up her overall strength. When she is closer to getting off the vent, the plan is to move her back to Vibra which is an aggressive weaning facility.

Pac Spec also has good respiratory support team, with pulmonologists and respiratory therapists always checking on her.

Mom stood up and did a little walking yesterday, with support on each side. The OT is very pleased with how hard she works during their sessions and made a point to mention how strong her legs are getting and how much she's trying to move her legs on her own. She is one of their favorite patients because she works so hard and has had so much progress.

Yesterday Mom spent one hour off the vent, breathing completely on her own.
She seems very strong and looks great.

Today is Mom and Dad's 58th wedding anniversary. To celebrate, Dad is bringing some extra flowers and some cupcakes for the staff there at the hospital.

When I visited Mom yesterday, the nurse and respiratory therapist were very excited about how well she's doing. She just keeps getting stronger and stronger. The respirator is now doing the most minimal amount of work, leaving Mom to do all the work. She seemed a little tired, which makes sense as her body is getting used to the new work load. I'm going to visit her tonight and make sure she's not too tired/lethargic.

They are talking about putting her on a trach collar next. She'll be doing all the breathing, but the tubes will be giving her moist air. Another patient there at the hospital had one on and she was able to talk a little while wearing it. It would be great if she can do a little talking!

She had a Thoracentesis done on Friday (removed some fluid that had accumulated around her lungs). It went smoothly and she could tell the difference immediately. They did the procedure at another hospital, so Mom got to get out of her room and go for an ambulance ride. We'll hear the lab results today, but we're not too concerned since this is common with vent patients.

Mom seems to be over the lethargy and back to improving and getting stronger. Unfortunately, she has regressed quite a bit in terms of being weaned from the ventilator. She's almost starting over at step one again. The vent is now set at 8 but she's at about 21 - which means she's still able to do a lot of the work herself again. By contrast, last week she was doing all the breathing on her own (machine at 0 and her rate at about 20-21) and was kept on the vent just to help her with the volume of air going into her lungs.

She is watching a little bit of TV now and then. She's finally interested in some audio books and music. She's recovered enough to be more alert, but that means she gets bored easily and it's hard to find things to occupy her time. I may bring in some knitting and see if she has enough dexterity.

I had a great visit with her last night. She's getting better at handwriting which is making communication a lot smoother.

very tired

Mom has been very lethargic the last three days. They did a chest x-ray and ran a plethora of tests, but so far haven't found anything (at least as far as I know). I visited her briefly earlier today. She was more alert and seems to be getting better, but she's still more tired than I've seen her in weeks.

standing up

Mom let us know that during her PT session, she took two steps! I'm sure she was supported on either side by therapists. She was very happy about that and so are we.

She's communicating by writing with a pen when she needs to. Sometimes it's hard to read, but we're working on getting her set up with a clip board and eventually a lap desk which will make it easier and more comfortable.

She had some pain in her chest, perhaps her diaphragm. Doctors say it's all normal as everything is getting back to working order. She also let us know that she gets double vision sometimes - it comes and goes. Again, the doctors say it's nothing to worry about.

Respiratory update

Mom's brother Doug visited Mom last night and had an informative conversation with the respiratory therapist. Mom is controlling her breathing by herself; all her breaths are her own. She's still on the ventilator because she's not yet able to get the volume she needs on her own. The machine is helping her get the extra volume that she's not able to take in by herself. All this is a normal part of weening from the ventilator and soon she should be able to do it all by herself.

Questions and Requests

Mom kept her eyes open for most of our visit yesterday. She was very alert and active in the conversations. We are still communicating by reading lips or spelling things out with her finger on a pillow on her lap. Soon, we are going to hand her a pen and hold some paper to see if she can write for us. She seemed happy, although still very tired.

When I asked her if she wanted anything, she mouthed "I want to go home."

Her movements keep getting stronger and stronger. She doesn't lift her arms against gravity yet, but I think she will soon.

She asked us many questions (which she's never done before): status of their taxes, making sure her women's group from church had the flowered tote bag with all their info, and making sure we canceled a her registration for a convention she is going to miss in Spokane this summer.

She also made requests, also something she's never done before: brushing her hair and moisturizer on her hands & feet.

She waved good-bye when she was ready for us to leave.

lots of thumbs up

The doctors, nurses and therapists are impressed with Mom's progress. Dad went back over with me for a quick visit last night and Mom opened her eyes about half way when we arrived. She kept them open by herself for quite a while. She was much more engaged and active in our conversations.

I'm seeing a lot more of her personality coming out through her hand and face gestures. Her response time is much quicker and more definitive. Lots of thumbs up. She even teased me about taking so many pictures of my kids (I'm stunned that she didn't want to see every single photo of them :) ), although she did want to watch video of August walking a few times.

She seemed to be more comfortable and pain-free than I've seen in a while.

All good stuff.

Progress!

Mom continues to make excellent progress. She's still a bit tired from the blood infection, but her range of motion, strength, and dexterity continue to improve.
The big news from this weekend is the new bowel activity.
The respiratory therapist has been able to turn down the vent so she is consistently doing more breathing on her own (the vent is set at 4 and she's doing 14-20).
In general, communicating with her has improved a lot because her facial expressions and gestures are more pronounced. Because of the vent, she is still unable to talk. When we can't read her lips or figure out what she's trying to say, she simply writes it out with her finger on a pillow or lap.
As usual, it's slow and steady progress. We are very thankful.
Please continue sending cards and letters. Mom enjoys hearing from you.
Thank you!

Mom has been slowed down a little by a blood infection. They have her on antibiotics and are staying on top of her needs. I was able to see her the last three days: she was very tired on Friday and Saturday but on Sunday she was much more responsive and communicative (nodding and shaking her head, smiling, thumbs-up, etc).

She enjoyed hearing the cards that came in this past week. With Dad holding her eyes open, I also shared recent photos of my kids (like Dad says, no one gets out of it :) ).

Food!

Thanks for setting up this blog, Tom! I'll post updates about Mom as frequently as I can. This is an exciting time in her recovery as there are more improvements all the time. It's all happening slowly, but surely. We also welcome everybody else to contribute as much as you want, via the comments option on the menu below, or email us if you have something you want to share.

When Dad and I got to the hospital last night, the doctor was so excited to tell us that Mom's digestive system sounded like it had started to work, which means they can start feeding her liquid food, from a tube to her stomach. So far, there hasn't been any discomfort.

She's opening her eyes about 1/4" by herself. It's easier for her when we clean her eyes first, but she still tries to open them throughout our visits.

There is definitely more strength throughout her body. Her movements are more purposeful. She moves her hands/elbows around on her lap as she searches for her pillow or rolls that she likes to hold in her hands.

They had her sitting up in her chair for a while yesterday. While she was up, they focused the PT & OT on her legs and feet.

She's doing more and more breathing on her own. They've started to turn down the respirator so she can do more of the work herself. It's too soon to take the vent out, but they'll be even more aggressive at weaning her next week.

Introduction

Welcome to the site we're putting up for family and friends that want to check in on, and communicate about Marlene as she fights to overcome the effects of botulism.