Day Forty-Nine and Fifty

Day 49 & 50 (May 30 & 31)

It's been great having the girls with us.  They have done an awesome job of interacting with Brian. They feed him, drive the wheelchair, and attend some of his therapies.

Brian has a new personal best on the standing frame...70 degrees for 13 minutes!  Once he reaches 80 degrees and can tolerate that position for 20 minutes, it will open the door to new exercises.  Brian's blood pressure needs more stability for this to happen.

Brian is doing the diaphragm pacer twice a day.  He's doing well and pacing as long as he can tolerate it. He says it's hard work!

Thank you for your prayers and positive vibes...we appreciate them! 

Day Forty-Seven and Forty-Eight

Day 47 and 48 (5/28 & 5/29)

We survived our first outing to the Rockies game. Began in a hail storm, game delayed an hour, and chilly temps, but we made it nonetheless! Brian sure was excited to get off the hospital grounds. He enjoyed his nachos and funnel cake too.  :)   My nerves settled down once we navigated through the crowd to our seats.  It was a long outing (7 hours) and we got to bed around midnight, which made today a little tougher due to fatigue.

Brian did the diaphragm pacer 3 different times today.  It really wears him out, but such a trooper! Brian started out with upper extremities. Then, he had PT where his therapist worked on stretching his legs and neck.  Brian has swelling in his hands, so he received an hour of edema therapy.  Fortunately, he caught a little catnap during that session.  

The girls were with us during his afternoon therapies and it was fun to have them with us!  They are the BEST medicine!  

Day Forty-Five and Forty-Six

Day Forty-Five and Forty-Six (May 26 & May 27)

The last two days have been very good.  Brian's nausea is better and he is doing well with the diaphragm pacing.  It's great having the girls out here. It's just what Brian and I needed to keep going. 

Yesterday,  I took the girls for pedicures and then we took Brian for a walk around the block. Each night, we've had family dinner and it's been awesome! 

The girls saw Brian in the wheelchair for the first time yesterday.  They were amazing! We are so proud of the strength they've had throughout this journey.  

Tomorrow we go on our first Craig outing to the Rockies game with the family. We are nervous and excited since it's our first time off-campus.  Luckily, there will be a nurse and respiratory therapist with us at the game.

We can't wait to be home under the same roof when the time is right. 

Day Forty-Three and Forty-Four

Day 43 (May 24)

Brian was nauseous for most of the morning. In the afternoon, he paced a few different times on the diaphragm pacer and did well.  I was able to take the girls to lunch and we shopped at Target.  It was nice to run normal errands with them.

The girls came for dinner and Brian was so happy. They started goofing around like they always do, which put a smile on his face!  I slept at my brother's house to spend more time with them.  We were very sad that Brian couldn't join us. It will be nice once we are all under the same roof.

This journey is a hard one for all of us. Please continue to pray for our strength and faith in a plan bigger than we can imagine.

Day 44 (May 25)

Brian woke up feeling better today.  He paced for about 45 minutes this morning before heading to Physical Therapy.  At PT, they put Brian in the standing frame.  He made it to 30 degrees. It was the first time Brian got out of bed since the surgery, so I'm sure that had an impact. After PT, Brian did the FES bike.  

Brian's regular classes were cancelled in the afternoon so he could focus on the diaphragm pacing.  He paced for a 2-hour stretch.  Needless to say, Brian was worn out after that.

The girls came to visit for a quick dinner...I'm looking forward to spending more time with them over the weekend.  

Day Forty-Two

Day 42 (5/23/18)

Today was a great day!  Brian had a successful diaphragm pacer surgery. I knew he was feeling better after surgery because he asked for a Baconator Burger from Wendy's. :)

Brian's diaphragm is weak because he's been on the vent for a long period of time, but it will get stronger as he paces. Tomorrow he will work 1-1 with a Respiratory Therapist to pace throughout the day. 

The girls made it safe and sound. It is so good to see them!  They visited Brian for awhile, but he was still sleepy from the surgery...they will be back at some point tomorrow.

Kenzie found out this morning that she was appointed Stuco co-president for the State Convention.  We're so proud of her!

Thank you for all the prayers and well wishes. What an awesome day!

Day Forty-One

Day 41 (5/22/18)

Today was a good day.  Brian started out with OT and they worked on programming the wheelchair he's using.  After OT, Brian headed to PT.  He got up to 60 degrees in the frame, which is the best he's done yet!  

We had an appointment with Transportation Clinic.  They gave a quick overview of the accessible van.  The clinic will set up another time to give specific details needed for the dimensions of Brian's wheelchair.  

The day ended in the Upper Extremities Room.  Brian worked on range of motion in the right arm with the assistance of the machine.  

Tomorrow is a big day!  The girls will finally be here!  It's been six long weeks without them, and we are so excited! The diaphragm pacer surgery is scheduled for 7:30 in the morning.  We pray the diaphragm responds so that Brian can begin pacing!  We thank you for all of your prayers and love too.  

Day Forty

Day 40 (5/21/18)

Today was a busy one.  Brian started out at OT.  We walked around the block with the therapist to see nearby stores and restaurants. We now have an "off-campus" pass that allows us to travel outside of Craig.  Brian can go to the apartments (located next to Craig) where the girls might be staying while they're here.  It will be nice to get him out of the hospital setting.

After OT, we headed back to the Tech Lab.  The therapist is trying to get Brian's phone to respond to voice activation from him.  

Back to the Wheelchair Clinic for two hours so Brian could get into a different wheelchair.  I'm hoping this one will work well for him.

Brian had to get an echocardiogram (procedure prior to diaphragm pacer surgery) so he missed Physical Therapy.

The day ended in the Upper Extremities Room where Brian's arm was moved by a machine programmed to give him full range of motion.  

Thank you for your continued prayers and support!

Day Thirty-Nine

Day 39 (5/20/18)

Today was good, not too much to report.  The weather was cloudy and rainy all weekend so we weren't able to get outside.  Brian's respiratory therapist came in this morning while he was sleeping.  She said Brian was taking spontaneous breaths again!

Brent and Laura did the 10-mile Colfax run today in honor of Brian and gave him their race medal.  He loved it.

We are anxious for Wednesday to get here. The girls fly into town (2 days/13 hours/13 min/22 secs) and Brian's surgery is that morning.  

It's going to be a great week!

Day Thirty-Seven and Thirty Eight

Day 37 and 38 (May 18 & May 19)

Day 37

Brian had a good day.  He started his morning on the FES bike again.  The motor and stim powered his legs to move for thirty minutes. 

After the bike, he went to PT where they put him in the standing frame.  Brian got to 30 degrees today and his blood pressure started to drop, so his therapist didn't push him beyond that. If he can get to 80 degrees, it will open up more rehab possibilities, so that's the goal!

We ended the day in the Tech Lab.  The OT was teaching Brian how to use the sip-and-puff straw as a mouse to navigate apps/sites on his phone.  It's hard to do and will take practice...the straw does not always cooperate with Brian.  :)

Day 38

Big blessings today! I got quite the surprise from Brian and the Respiratory Therapist this morning.  Click on the video to hear the great news!  We thank God for the potential that the diaphragm pacer will work  Surgery is scheduled for Wednesday morning and surgeons won't know if they can stimulate his phrenic nerve until the surgery is in progress.  We pray the nerve will respond, as it will give Brian the possibility of getting off the vent for periods of time.  

Thank you for your continued prayers and words of support! It's comforting to know we have an army standing behind us!

Day Thirty-Six

Day Thirty-Six (5/17/18)

Today was a long day.  We were at the Wheelchair Clinic from 9:30-noon.  The team was scripting a chair for Brian.  

We took a 3 1/2 hour trip off-campus to the eye doctor for Lasik consultation. The ride to the office was rough because Brian's head pads didn't hold his head securely.  The ride home was much smoother with a few "on the fly" modifications.  The doctor didn't feel Brian was a good candidate for the Lasik because of his prior cornea transplant surgery.

Ready for a great day tomorrow!

Day Thirty-Five

Day 35 (5/16/18)

Brian had a good day.  He used the FES bike for the first time today.  It applies small electrical pulses (stimulation) to paralyzed muscles to restore or improve their function. The bike's motor "pedaled" Brian's stimulated leg muscles. Hopefully in time, Brian will begin to pedal along with the motor too.

After the FES bike, Brian went to Upper Extremities therapy. They put his right arm in a robotic device to give his arm various ranges of motion.  He will get this therapy twice a week.

During PT today, Brian worked more on strengthening his neck muscles and trying to control his head. Once Brian was balanced with the help of his therapist, he stabilized his head for a few seconds.  

At Recreation Therapy, Brian planned an outing to a local high school so he could practice navigating inside and outside.  It's something that will come in handy once we return home.

It was a fun day for Brian to try new things!

Day Thirty-Four

Day 34 (5/15/18)

Today was a good day for Brian.  We started out in Wheelchair Clinic (again) and the wheelchair is still giving Brian trouble (again).  He will get in a new wheelchair on Thursday. We will order his own chair then with the help of his OT, PT, and the wheelchair expert.

We went to the Technology Lab so Brian could set up his Android phone for Bixby.  It will allow him to use voice activation for most commands.  Brian's voice is weak right now and there is a pause in speaking due to the vent, so Bixby keeps turning off before he can give it a command.  Tech Lab will keep troubleshooting until we go back.

During Physical Therapy, Brian legs, head, and neck.  His regular therapist was in a meeting, but the substitute therapist commented that he is getting strength in his neck.  

We had another hour long education class.  Not going to say anything more about that... :)

I attended a counseling session at the end of the day.  Craig does a good job to make sure the patients and their families cared for.

A BIG thank-you to Megan Vallis for organizing the Truman Spirit Week.  The school (teachers and students) raised $1532.93.  We appreciate your kindness and generosity.  

Crestwood Elementary, the school where I teach, had a PJ day to raise money and they are having a Penny Wars competition this week on our behalf.  The support is overwhelming and very much appreciated.  We have many big expenses with equipment, home renovations, and wheelchair accessible transportation in our future.  

As always, thanks for supporting us, praying for us, and sending the good vibes our way.  

Day Thirty-Three

Day 33 (5/14/18)

Today was okay. We started out in a meeting talking about the application process for Social Security.  Brian definitely wants to work after rehab, but the application is a safety net if needed. Of course all the unknowns cause worry for both of us. 

After that meeting, we had to attend an hour long meeting about how to avoid pressure sores and care for the skin of spinal cord patients. It is a BIG deal to keep the skin healthy.

The day ended with Physical Therapy.  Brian did the standing frame for the second time since he's been here.  He made it to 50 degrees again.  His blood pressure was a bit lower than last time, but his neck strength improved.

Thanks for all your sweet comments...I share them with Brian every day! Keep sending the prayers and good vibes.  

Day Thirty-One and Thirty-Two

Day 31 and 32 (5/12 & 5/13)

The weekend was calm.  Brian and I got outside both days to enjoy the weather.  It was nothing like the hot, humid St. Louis weather I keep hearing about.

Brian is doing well.  His blood pressure has been stable and he's feeling good. No temp and lungs are improving.  All blessings!

Brent spent the night at the hospital last night so I could recharge.  That was a wonderful Mother's Day gift. 

I got to talk with my sweet baby girls on FaceTime and they gave me a beautiful necklace.  Had a lump in my throat all day because they aren't with me, but soon...

Brian and I want to say Happy Mother's Day to our amazing moms.  Jenny has been so strong through this journey.  She lost her husband unexpectedly last June and 6 months later, she is dealing with this.  When she is on FaceTime with Brian, Jenny is always smiling and encouraging. 

My mom has been my rock.  She moved into my house, takes care of my kids and dog, and makes sure things are running smoothly. My mom is packing rooms to get ready for the renovations to begin soon. And does it all without me asking...I don't know what I'd do without her.  

Day Thirty

Day 30 (5/11/18)

Today started with OT.  They were still working on the chair and calibrating it so that Brian could drive it better.  During PT, the therapist did e-stim with Brian on his left ankle and quad. Brian responded to the stimulation in his ankle, foot, and toes.  Not too much stimulation in the quad today.

We had a mid-day break in the schedule, so we took advantage of the weather and ate outside. It was Hospital Appreciation Week and there was a cupcake and ice cream truck for the patients and staff.

After lunch, we were scheduled for a class led by a former Craig patient who is quadriplegic.  The topic was about traveling on a plane.  That is no easy task to say the least.

The day ended with an 90-minute session for me to learn about the ventilator...how it works, how to troubleshoot once we get home.  We are still praying (please pray) that Brian gets the diaphragm pacer which could give him hours and hours off the vent, but he would need the vent at night.   This is just all overwhelming.  I'm sure I'll be more comfortable with time.

The Spirit Week at Maddie's school ended with "Blue Day" since blue is Brian's favorite color. Maddie had a great time honoring her dad this week!

Please keep us in your prayers.  We pray for patience, strength, and faith every day. It's easy to get discouraged at times. Thank you for your support!

Day Twenty-Nine

Day 29 (5/10/18)

Today was okay, not too much happening.  We didn't get much sleep last night and are running on fumes. Brian started the day with OT.  They worked on his wheelchair some more. The electronics are still causing issues.  

Brian's regular Physical Therapist was in meeting today, so Brian had a different therapist cover for him. They did some stretching during the session.

After PT, Brian had an appointment with the counselor.  I meet with him next week.  It's part of the complete care that Craig offers and something that would be beneficial to all of us.

Besides the enterobacter bacteria, Brian also has MRSA. They are treating both with two different antibiotics.  The doctors want his lungs healthy to hopefully do a diaphragm pacer soon.  Praying the infections clear quickly.  Still waiting on the culture from the bronchoscopy. 

Fun day at my school and Maddie's too.  Today was PJ Day at Crestwood Elementary.  Students donated a dollar to wear their pajamas to school.  The proceeds will be donated to our family. One little sweet first grader took a dollar from his tooth fairy money and brought it to school.  

It's was 70's day at Truman since Brian was born in 1972.  Maddie was all decked out for the day.

Thank you for your prayers and good vibes!

Day Twenty-Eight

Day 28  (5/9/18)

Brian started his day with a combined OT/PT session.  They focused on increasing his neck strength.  His therapists are noticing increased strength in the neck muscles.  

Back to the Wheelchair Clinic...again...we have the worst luck with the chairs. The display panel is acting up, so they will continue to work on it tomorrow.

Brian went for the bronchoscopy today.  Unfortunately, they didn't pull much up.  There are more secretions in his lower lung.  The Respiratory Therapist has increased the amount of air volume Brian is receiving to open up the lung and hopefully force the secretions up.

I stepped out to get my haircut while my brother stayed with Brian and I missed several doctor updates.  The Infectious Disease doctor came by and the cultures are showing the same bacterial growth in the lung and bladder called enterobacter.  The full culture report will be complete by tomorrow.  The doctor is suspecting the lung culture to show pneumonia developing.  They are staying on the same antibiotic course for now and will change if necessary.

Also while I was gone, the doctor from the eye clinic came by. They approved Brian for eye surgery.  Instead of LASIK, the doctor will do a procedure called PRK due to his cornea transplant. He may end up getting LASIK on the good eye.  We will have a consultation next week to get it all hammered out.

Today was PJ day at Maddie's school as part of the Spirit Week for Brian. She's having lots of fun dressing up each day.

Keep the prayers coming.  We need all infections to be gone.