Maggie Rudy Wed 7/25/18

Maggie is home!  It took an excessively long time to get checked out of Kernan due to the in-house pharmacy and some of the prescriptions, but Laura and Maggie made it home around 3:30 this afternoon. It sure is great to have the entire family under the same roof again!

Laura finally finished getting the knot out of Maggie's hair this afternoon, and tomorrow has her scheduled for a manicure. A few more steps towards normalcy.

Mags will start some outpatient rehab next week at FMH, then likely transition to another local facility that specializes in TBI in a month.

This may be one of the last daily (mostly) blog posts - I will transition to a weekly update on the weekends, relating funny and interesting Maggie stories from the previous week. An open house remains on the horizon in September hopefully, and we will reach out here and via email for that event.

Thanks so much for your support through the past 39 days!  God bless, Craig & Laura.

Maggie Rudy Mon 7/23/18

Today Maggie had her stomach peg removed, much to her relief!  A full day of therapy for Maggie, and a full day of planning for Laura with appointments and outpatient therapies for the first month after Maggie's release.

We have a meeting tomorrow morning with the neurological team and care team to discuss some of these items and her medications moving forward. Also some wound care instruction for the areas where her trach and stomach peg were located.  I believe we'll also find out what her therapy schedule is for Tuesday and Wednesday, and what time we will be bringing her back to Frederick.

Today Maggie has been in Baltimore for 37 consecutive days!  Seems like longer, but looking back she has made tremendous progress from day 1 to day 37.  Thank you all for your positive thoughts, support and prayers - Maggie couldn't have gotten here without them!

Also - in case you were wondering - Popeye's chicken tenders for dinner.  She'll have a bit of an adjustment regarding meals when she returns home... 😉

Maggie Rudy Sun 7/22/18

Great to see Maggie today - she is doing many things more fluidly, and got out early this morning for a walk with Aunt Amy. Laura and I got to catch up with her after a few days away, and then she had a group of friends stop by for a visit.  She's looking forward to getting home and sleeping in her bed, for sure. 

Tomorrow we'll get an update from the doctors on a number of items including removal of her stomach peg, status of medications, and plans for outpatient therapy.

Another step forward: Maggie correctly remembered her phone password! Great, because she has 80- odd text messages! Now I need to charge and deliver her phone to her! Give her some time to respond - she's still not typing yet, though I know she will be!

Maggie Rudy Sat 7/21/18

Maggie has been cleared to walk around the wing, and has had her wheelchair removed from her room. She can now walk wherever she needs to go!

Therapies continue, and she is scheduled to have her stomach peg removed Monday.

The best part is she is scheduled for release on Wednesday 7/25, and will be coming home! We will be scheduling her outpatient therapy Monday, which will likely start in early August.

She has spent the last few days getting spoiled by her aunts while we have been at Nadia's orientation for Coastal Carolina University. Thanks Rixey and Amy! 

Maggie Rudy Thu 7/19/18

Now we're making some progress! She'll be thumb wrestling in no time!

Thanks for all the love, support and prayers!

Maggie Rudy Wed 7/18/18

More progress today for Maggie: her tracheostomy was removed! She also had a vision test and passed that with flying colors, though she does need to tweak her prescription slightly.

Next up: she really wants her stomach peg (feeding, meds) removed. Maybe this weekend?

Otherwise her therapies continue, and she is progressing gradually every day!

Maggie Rudy Tue 7/17/18

This just in from Laura - great news:

"Maggie's trach is down to a 4.  They will do an overnight plug to see how she breathes on her own at night.  If she does well, the trach comes out tomorrow😊!!!!!!!  She has been plugged during the day for a week, so she should do well tonight."

Maggie Rudy Sun 7/15/18

Maggie was in good spirits this afternoon.  Sunday is a low-key day at this facility - there are no therapies - so Laura and one of Maggie's college friends worked on her hair for a while today, which has been in need of detangling for some time now.

When I arrived, Laura and I were able to take Maggie outside to the front of the building and walk a rather large courtyard sidewalk with her for about 30 minutes or so.  We needed to wheel her out the front door in her chair, but once we got to the courtyard we parked the chair and got some exercise!

We then took her down to the healing garden - also outside - in the shade and talked about her progress.  She was able to get her two thumbs up, but it still takes some effort.  Laura relayed a story from the hospital where they asked her to move her thumb and her leg went up! That got a laugh, and a photo op for Dad:

She says she feels like she's in a bit of a daze, like she's watching someone else go through the physical and occupational and other therapies.  Her visual perception is also slightly dislocated.  She can see and read a clock or whiteboard, but some larger, more complex objects (a building with trees, porches, roofline) she has trouble seeing or interpreting. With the medications she is still on and her brain healing, these are normal and will fade with time. 

I brought some dinner from outside the facility this evening - Mags is getting tired of cafeteria food - and she ate like I didn't bring enough! She did say she was full when she finished, and the food was really good.  When I was leaving, she and Laura were working on menu choices for the upcoming week, getting ready for a movie, and preparing for a full therapy day tomorrow. Yay, more single-leg squats!

Maggie Rudy Sat 7/14/18

Today is Becca's birthday! Laura came home and we celebrated her 14 year birthday.

Thanks to Rixey and Amy for hanging with Mags today - sounds like she had a great day! Chick-fil-A for dinner, minimal nausea, therapies all went well. Maggie wished a happy birthday to Becca via phone, which was great.

Mags was outside again today - she does love to get outside! Doing well.

Tomorrow is a typically slow day at the facility. No therapy. Maybe Maggie's hair can get detangled? 



Maggie Rudy Fri 7/13/18

The therapies are working Maggie's body and mind - she usually takes a few short naps in between sessions when she can.  She is eating better, but the protein supplementation (ensure or other) seem to be giving her a bit of nausea.  Hopefully this will correct itself in the next few days.

Seraquel is still used at night to help her sleep, but this will be the next medication that she will be tapered off from.  She needs none during the day, and should sleep well at night without it.

The new anticipated release date is sometime in the middle of the last week in July!  Thanks to all of you for your positive energy, thoughts and prayers!

Maggie Rudy Wed 7/11/18

Maggie's doing remarkably well with her trach modification, so well that it will probably be completely removed by this time next week.

Today we finally got to see two thumbs up! Not the best thumbs- up, but a great effort and definitive result!

Maggie, Laura, Nadia, Becca and I got to enjoy lunch from Panera Bread at 12:30, just prior to recreational therapy at 1.

Overall, Maggie's nausea has abated and her appetite has returned. She no longer needs supplementation through the stomach feeding tube, which will be removed shortly. Both Maggie and Laura are sleeping better at night.

Rec therapy is the most challenging session she has, but Maggie's favorite. These are card and dice games requiring strategic thinking and placement of small playing pieces. She is improving both cognitively and motor coordination, but she has a way to go.  With her spirit and competitiveness, I know she will get there!

Maggie Rudy Tue 7/10/18

The big news for today, from Laura via text:

"Maggie has her voice back😊  She went down to a size 6 and  was able to use the voice valve.  So good to hear her talk.  Hopefully, next week she will down size one more time on Tuesday and be finished with the trach possibly by Wednesday or Thursday.   She is much more comfortable with the new tube!!!"

It was great to talk to her today! I'm very bad at reading lips.  She got right into storytelling mode about a couple of dreams she had.

She had 4 hours of therapy today, and is progressing with slightly better motor control than the previous day.

Maggie Rudy Mon 7/9/18

Today was a good day! Nausea is better, and Maggie was more interactive in all her therapies and did 30% better on her cognitive test. She had PT, OT, speech therapy and Recreational Therapy. I think she's thriving on being more active.

Kudos to Laura for single-handedly figuring out a big component of the nausea issue and being a fantastic advocate for Maggie!

Nadia visited this evening, and reports that Mags is on the ENT evaluation list for tomorrow!

Maggie Rudy Sun 7/8/18

I got to spend all afternoon and evening with Maggie on Sunday, and Laura got a chance to get home for a few hours.  Maggie had a great morning, with some one-on-one PT from Aunt Amy, then got to go outside for a while!  Under an hour, but it was good to get her in the sunlight.

There is a fine balance we're working to achieve with Maggie between the amount of mental and sensory stimulation, her food intake and tolerances, and her medications. She has a propensity to become nauseated when one of these - or a combination - is pushed too far.

She does OK with meals, but they still need to supplement her.  Her appetite hasn't returned entirely.  After lunch they swabbed her mouth out with a medication for thrush, and then she also used a rinse.  This left a bad taste in her mouth, and she ended up getting sick.  She felt much better after and slept a bit.

One of her college friends came to visit and brought jumbo playing cards and dominoes, and we played a full game of go fish and dominoes.  These games were a good challenge both cognitively and for fine motor control.  Maggie's sense of humor and her beautiful smile are 100% back!

The tracheostomy is an irritant, and she goes through bouts of coughing during each day.  There is a medicine she's administered for this - in addition to an anti-nausea medication - as needed.  We're all looking forward to her evaluation on Tuesday to get a plan to reduce or remove this device.  Adding a speaking valve would be fantastic, because I have discovered that I am a poor lip reader!

She ate about half her dinner (rice and beans, one of her favorites!), but then was immediately administered her cocktail of anti-seizure medications, with a supplemental nutrient/protein mix fed through her tube.  She ended up getting sick about 30 minutes later.  We're theorizing that perhaps the cocktail needs to be split up and administered in its component parts over a longer timeframe, or the medicine should be given about an hour after dinner. 

She has a great care team at Kernan, and we are able to discuss these thoughts and speculations with them.  In general, Maggie is proceeding exactly as she should in this stage of her recovery.  Parents just want to fix everything NOW. Sunday's are typically quiet days on the wing; Monday brings back the neurologist and the case manager, and Laura will meet with them for the weekly plan update plus get answers to some of our questions.

Maggie Rudy Sat 7/7/18

A bit of a speed bump today. Maggie did not eat much yesterday evening, and did not get as much supplementation (since she had started eating). That combined with her meds made for a nauseous and restless night and early morning.

They got the nutrition and nausea under control by lunch and she rested much of the afternoon.

We're hoping to get her outside tomorrow with this fantastic weather. But they have specific rules for patients in her wing, and her trach might play into the scenario.  We'll update tomorrow...

Maggie Rudy Fri 7/6/18

Maggie had another good day today.  She got in more walking with the PT, more work with the OT, and passed the barium test with the speech therapist with flying colors.  By the time I got there at noon, she was eating her first meal in over 2 weeks.  

She started with chocolate pudding, and had baked fish and fruit (apple, cantaloupe, banana) and NO applesauce.  She will remain on a solid food diet and weaned off her IV food over the next few days.  No restrictions on food either.  Maybe we try pizza soon?

She played catch with Laura and the PT, and she really is counting down the days to when the ENT visits (Tuesday).  Still the two questions: when is my trach coming out, and when can I take a shower?

The doctors are still weaning her off her one remaining sedative, they've eliminated a daytime dose of seraquel, and they are transitioning her seizure meds. They continue to assess the cognitive impact of the brain injury, which should be more easily evaluated when she can speak again.  No "thumbs up" yet, though Maggie tries - and laughs!

Probably the best news is that - after a team meeting this morning - Maggie's schedule for release from Kernan to home will be at the end of this month!  There are many variables in this equation, but the goal is to get her home before August.  We will be continuing with outpatient therapy 3 days a week after this, but getting her home will be great.

Thank you all for your positivity and prayers!  God bless, Craig.

Day 20

Forgot to add: Maggie expressed interest in getting to the beach today.  We thought that was a great idea, but she'd need to wear water wings and a duckie tube within 10' of the water. 😉

Maggie Rudy Thu 7/5/18

Maggie had an hour of physical therapy, and hour of occupational therapy, and an hour of speech therapy today!  Some of the highlights are that she walked up and down a flight of steps with the PT, washed bedside and put her clothes on with the OT, and enjoyed ice chips and applesauce with the speech therapist.

She continues to improve her focus and alertness every day, and is now counting down the days to her evaluation with the ENT (tracheostomy).  The two questions every day: when can I get the trach out, and when can I shower? (trach must be removed to allow showering).

Laura said she has moments in trivia where she knows answers immediately. Chemistry is still a top knowledge area for Maggie.  However sometimes she struggles with simple math and spelling.  She had two neurological exams today, and the fine motor function in her hands especially is an area for improvement.  Her limbs are just not doing what her brain is telling them to do exactly, but they are improving.

After a very active day she is a bit exhausted, and is currently watching a move with Laura to relax (Prince of Persia).  Tomorrow speech therapy will do a barium swallow test - if she passes that, she'll start eating regular (soft to start) food again!

Also, I found out today that Maggie does NOT like applesauce, and only enjoyed the ice chips...

Maggie Rudy Wed 7/4/18

Finally moved today to acute rehabilitation - Maggie is ready! We can't thank the staff enough at UM Medical Center for taking such good care of our girl!

Rehab starts tomorrow, and the ENT group is scheduled to be in on Tuesday for a tracheostomy evaluation.

Maggie Rudy Tue 7/3/18

Maggie did not make to the rehab center today. She got sick last night - we believe to a change in medication - and the hospital wanted to keep her one more day. They will transport her on the 4th.

She is more focused every day, for longer periods of time. Today she asked about her situation, and we told her the story from the beginning. She understood, and told us something like "I'm sure going to get a lot of teasing when I get back to work!" We all laughed at that!

She is sitting upright now, instead of sliding down the chair, and with much better control. There is still a struggle with her fingers, but she has better hand movement overall.

Thank you for all your prayers and support for Maggie - she continues to improve and impress every day!

Maggie Rudy Mon 7/2/18

2:30 pm. Some text messages from Laura today:

"Ok Maggie put on her socks, brushed her teeth (with her weak hand),  washed her face, danced to the chair with only one person for support, and pushed herself back in the chair.  Good day so far." - this from 9:45 this morning. Then this from around 11:

"She keeps trying to get out of the chair to walk to the sunroom.  She thinks she is strong enough 😁  Good mindset today.  She is with PT now."

A few minutes later: "Drum roll.......  Maggie just walked to the sun room from her room with a walker!!!!!!!"  That's about 150 feet!  One more:

"Looks like she is headed to rehab today.  Got our first choice we think.  Fingers crossed!!!!!!" This would be UM Kernan Rehabilitation. We don't yet know for sure, but this is good news!

6:30 pm. We did not make the trip to Kernan today, but remain hopeful for tomorrow morning.

7:30 pm. I forgot to mention that some of Maggie's ICU nurses stopped in today to check on her - very emotional. Maggie's a rock star!  (She gets that from her mother...)

Maggie Rudy Sun 7/1/18

2:30 pm. Maggie was a little sad this morning, but we were able to move her to the solarium on her floor for a while which helped her mood immensely. That and a short visit from her cousins.

She is more responsive and interactive today than yesterday. The doctors say she is ready for more therapy, but today is Sunday and the staff is thin (except for trauma). Tomorrow will see more therapy, a time table to move her to the acute rehab facility, and perhaps an update on a speaking valve for her trach.