Maggie has started outpatient rehab with Baker here in Frederick. Both OT and speech have been coming to the house, though this will change to their office in the near future, and probably add PT.
We've been walking or on the stationary bike for PT at home, and keeping up with brain games. The most recent alphabetical list: countries of the world (there is no "x"). We got to the pool today, and walked through a RV dealership for a few hours yesterday.
The latest big achievement: she has been able to get her contacts in her eyes the past two days! This really helps, because her glasses prescription is old.
The tracheostomy and stomach scars are healing well, though they itch a lot. Mags also takes a few naps per day. This is part of the healing process, and we're very pleased with her progress so far. We have a follow up appointment with the neurologist this coming week, and plan to stop by UM Hospital to visit the team at neuro ICU. I hope to get some good pictures from that visit!
Regards, CR
Maggie is doing well here at home. We continue walking and quizzing - usually these are alphabetized lists of elements in the periodic table (there is no j or q, and Krypton is the only k), or Disney characters and their show or movie, or some other fun category. Mags is struggling with jigsaw puzzle a bit, but she is continuing to try and she gets a little better every day.
Mags is sleeping much better, and has started outpatient therapy with Baker Rehab here in Frederick - they specialize in TBI. They are starting in the home, and will move to their facility on TJ drive in a week or so.
Lumosity is a help, but frustrating - her processing speed is improving, but for her age group the games are fast! She can see her phone much better, and can respond to texts, watch YouTube, etc.
We're glad everyone is home! It's been a small adjustment, but all of us are enjoying eating together at dinner, and swapping stories.
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 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!
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!
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."
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'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!
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.
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!
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 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!
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...)
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.
Maggie is officially out of ICU, moved to a different floor. She's more alert today, and we got her smiling and laughing.
Her gross motor control is there, but she can't yet work her fingers or toes. Seems like her arm movements are getting better and more varied.
She also still has a bit of a phlegmy cough, one thing keeping a speaking valve from being installed. Hopefully this clears up in the next few days. Maggie says the coughing hurts.
We sure will miss the team in ICU - and the care Maggie received there - but it is fantastic that she's progressing every day on the road to recovery!
8:30 am. Mags had a good night, and Laura got more sleep (excellent). Laura and I had a much needed dinner and beer outside the hospital yesterday evening near the O's stadium, and got a chance to look at the road ahead.
Mags will likely be moved out of ICU today or tomorrow. She is responding to more commands, and doing her best to communicate with us. Yesterday she mouthed "I want to go home" to me; I reassured her that we want to get her home too, but she needs to be able to thumb wrestle me first, or respond to more commands. This morning the nurse told her to squeeze her hand and stick out her tongue - she did both!
We expect she will be on another floor of the hospital for a few days until we can get her a bed at a sub-acute care rehab/nursing facility in the Frederick area, of which we've identified 3 from a list. The case manager is working on getting this set up, where a bed is available. She will be at a sub-acute care facility until she can handle 3 hours of physical therapy, at which time she will move to an acute care rehab center in the Baltimore area.
She's come a long way in the last two weeks, and we are very grateful for all your thoughts, prayers, and support! We will plan an Open House when Maggie is back home and ready, and would like to invite all of you to attend We will target late summer/early fall, and will email you when we get a date and time set, as well as information on where she is rehabbing.
Please use the link below to provide your email address. Note that the blog posts will continue, but eventually will move to once per week, then diminish further from there. Email will be a more direct way to contact each of you regarding major updates and the Open House.
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God has truly blessed Maggie and our entire family! The verse of the day for June 18 was this from Isaiah 41:10 - "fear not, for I am with you; be not dismayed, for I am you God; I will strengthen you, I will help you, I will uphold you with my righteous right hand." Very timely and comforting for us. Please continue to keep Maggie in your thoughts and prayers, and we will update you when she's ready to receive visitors (and where)!
Love, Craig & Laura, Nadia, Becca, and Maggie Rudy.
3:30 pm. UPDATE: the occupational therapist and physical therapist were by today, and Maggie answered yes/no questions correctly, stood on her feet (with help), and followed commands. She will skip the sub-accute phase and move directly to accute rehab! 👍
10:30 am. We are very optimistic today, and we and the care team feel Maggie is making positive progress. Just in case, they monitored her for seizures over the past 24 hours, and saw none. The plan today is to cut one of her sedatives to less than half her current dose, because Maggie seems less agitated when she is trying to wake up. The process is longer and slower than her impatient dad would like, but we see daily improvement!
Thanks again for all the continuing prayers and support - Maggie and all of us truly feel the love!
2 pm. Not much to report today. Maggie is still active at times, and seems more focused when she is looking around the room. But she remains asleep. The team is still weaning her off sedatives. I see an improvement from yesterday, but she is not yet alert and responsive. Thanks again for your continued prayers. Craig & Laura
6 am. Tracheostomy surgery is scheduled for 7:30-8 this morning, barring an emergency elsewhere for the surgery team. Her nurses got the word from OR around 3 am that she was first on the list this morning. Maggie had a good night.
8:30. Mags is in surgery. The procedure takes approximately 2.5 - 3 hours, then she goes back to the ICU for recovery. The plan then is to bring her slowly off her sedatives. We're moving forward again!
1 pm. Maggie is recovering. The tracheostomy was a success, and she's coming off sedatives. She has started a 30 minute breathing test breathing on her own. Once she passes this test, they'll remove the ventilator altogether. She is trying to wake up, but it'll be a gradual process.
5 pm. Still not awake and alert yet, but she is moving - a lot. Legs, arms, abdomen, neck, arching her back, etc. She's been off the ventilator since 1:30, and all her vitals continue to look great. Doctors are pleased with her progress.
6/22/18
10:30 am. We're just waiting. There were a few emergency surgeries that came in to the hospital, and Maggie's procedure was bumped. Still hope to have it done today.
5:30 pm. Still waiting. Mags is resting. They had her ready to roll out of the room earlier, but an emergency call came in. Still hoping for this evening for her tracheostomy. Thank you for your continued prayers!
6:30 pm. This from Laura: "I just spoke to the surgeon. She just had another emergency come in. Rather than do Maggie in the middle of the night, she is waiting until tomorrow. She feels it is safer. Fingers crossed."
