Day Nineteen

Day 19 (4/30/18)

Kinda feels like Groundhog's Day.  Brian woke up with the shortness of breath, which caused some anxiety. Once he got out of bed and in to his chair, things improved.  

Brian started the day in PT.  His therapist worked on range of motion with his neck and head.  Brian's doctor gave the green light for him to start e-stim therapy, which stimulates muscles and nerves.  Brian's left quad and lower leg were activated, since it's an area that has natural movement. 

OT calibrated the settings on Brian's sip and puff system to make navigation easier.  The changes definitely made it easier for him to drive. 

We ended the day with an hour long education class about wheelchairs. My attention span was being challenged, but we learned pros/cons to different types of chairs.

Brian and I want to thank everyone for their support and prayers!

22 days, 14 hours, 3 minutes, and 21 seconds until we see our girls!  Can't wait!

Day Eighteen

Day 18 (4/29/18)

Same start as yesterday...breathing gave Brian some trouble when he woke up today.  They increased a setting on Brian's vent to help him take bigger breaths. They are hoping this will push out fluid from the space around the lungs. He will get an x-ray in the morning to see how things look.

It was another gorgeous day in Denver.  Brian and I sat outside and took in the fresh air.  It definitely lifted our spirits.  We had a nice dinner with my brother, sister-in-law, and Dad.   Brian watched the end of the basketball game and is watching hockey now, so I'd say he's doing better. :)  I'm glad the day turned around for him. Brian is such a trooper!  

Thank you all for the words of encouragement, prayers, and good vibes.  

Day Seventeen

Day 17 (4/28/18)

The day started out much like yesterday...Brian's breathing was giving him trouble when he woke up.  But, by mid-afternoon, we enjoyed the beautiful Colorado weather outside!  Brian has only been outside three times since his surgery in January, so it's huge blessing for him. Thank you for your comments!  Brian loves hearing from all his supporters.

Day Sixteen

Day 16 (4/27/18)

Today started out a little rough, but got much better as the day went on.  Brian has had trouble with his left lower lung for awhile.  This morning, it started acting up again.  After a few nebulizer treatments, albuterol, and the cough assist machine, Brian felt  better and started the day. For many days, Brian's cuff has been lowered on the trach.  This gives him the ability to speak.  Unfortunately, when the cuff is lowered, dry air enters through his trach causing his secretions to thicken.  Sooo...the cuff will only be up for periods of time throughout the day until the lung looks better.  

During OT today, Brian practiced driving the wheelchair using a sip and puff straw.  Once we get our "on-campus" pass to go outside this weekend, he can practice more.  PT focused on balance with Brian today.  It was neat seeing Brian initiate small movements side-to-side and up-and-down.  Blood pressure has been doing better as well. Blessings!

Day Fifteen

Day 15 (4/26/18)

Brian had a good day.  He started out over at the hospital to get a renal ultrasound (standard procedure) and chest x-ray.  Those procedures and getting Brian dressed took most of the PT time, but he squeezed in a little bit.  Brian ended the day with OT.  He had a vision assessment and will meet with the Vision Clinic at Craig next week.  We are looking forward to having more therapy added to his daily schedule!  Thank you for your continued prayers and support!

Day Fourteen

Day 14 (4/25/18)

Brian had a good day.  His blood pressure continues to stabilize, which is a wonderful blessing. The day started out with PT.  More stretching in different positions.  It's amazing to see his body can handle these positions because for several months in the ICU, he could barely move in bed without his vitals declining.

We met with the Recreational Therapist and she showed Brian how he could  play card games with the girls using a card holder. Once the girls get to Craig, we will have to try it out! 

Still working on the crazy wheelchair during OT today.  Correct body position is a must and they are trying to find a headrest that fits Brian well without interfering with his glasses when he is in the reclined position. 

My brother, Brent, figured out how to stream the Cardinals games through the computer to the TV, so Brian has been relaxing and watching baseball.  

Day Thirteen

Day 13 (4/24/18)

Brian did well today.  His day started with PT working on stretching. After PT, Brian headed to OT. Both therapists showed us different stretches to do with Brian throughout the day. 

We had educational classes about pressure injury prevention and an orientation of spinal cord injuries. It was a hard day taking in all the new information.  Sometimes, this experience seems surreal.  

We are also in the process of getting measurements for home renovations. Although we don't know what Brian's ultimate progress will be (and we are BELIEVING he will do amazing things), we have to prepare for his current situation so he can transition back home after we leave Craig. 

Brian's blood pressure was better today.  That's a blessing! They increased his pacemaker to 90 beats per minute to see if that helps stabilize the pressure.  

Brian had a fluoroscopy yesterday.  It is an x-ray that captures real-time moving images.  The doctors wanted to see if Brian's diaphragm muscles were working when he was off of the vent.  Unfortunately, they were not.  Our next step is for Brian to hopefully get a diaphragm pacer.  If he has phrenic nerve stimulation, the pacer would give support to Brian and possibly allow him to be off the ventilator for periods of time.  We could really use your specific prayers that he has stimulation to get the pacer.

Brian ended the day with a clean shave from my dad. He felt much better and it's nice to see that baby face again!

Please keep us in your prayers and positive thoughts.  Some days are just tougher than others.  We know God has our plan.  We pray for strength to get through each day.  

Day Twelve

Day 12

Brian had a better day.  His blood pressure was still running low this morning, but it improved as the day went on. We had our initial conference with Brian's team.  They gave an estimated discharge date (which is subject to change) as he progresses through rehabilitation.  At this point, his discharge date is June 20th.  Craig will work on two different paths with Brian.  They will focus on educating the family of how to help Brian adapt to home/community given his current condition, while also giving him intensive rehab to build strength, movement etc. to improve his condition. It's overwhelming, but we are trying to focus on taking things day-by-day.  Brian met with PT and OT today. They worked on range of motion and stretching. We BELIEVE Brian will do great and surprise the docs with his progress.  God, his positive attitude, sense of humor, prayers, and love from all his supporters will help him conquer this journey. Brian is surrounded by a large family who loves him and will be part of his success once he transitions home.  Brian wants to work hard for his girls! He tells them every day!  Thanks for the prayers and positive vibes!  Keep them coming.

Day Ten and Eleven

Day 10

It was another great day for Brian!  He was up in his wheelchair for 12 hours today.  Respiratory Therapy lowered his cuff so that he could talk all day too. He loved that!  We ate in the bistro for lunch and dinner and tried to get out of the room as much as possible to change things up.  Weekends are quiet...so not much to report. 

Day 11

Tough day for Brian.  He woke up not feeling well and battled very low blood pressure. Brian's red blood cell count came back low, so they gave him a shot to activate the bone marrow to produce more red blood cells.  He also got a shot of vitamin B12.  The doctor said change in altitude can cause this. They will continue to monitor Brian to see if it improves.  Our first official week of therapy begins this week.  We have an initial conference tomorrow to meet Brian's entire team and discuss his medical and functional status. They will establish goals for Brian and give up an estimated discharge date.  Thanks for your continued prayers and good vibes!

Day Nine

Day Nine

Brian had another great day! Very thankful for that...started out with PT.  He went down to the gym for the first time and his therapist did range of motion stretching with Brian.  He loved the change of scenery. After PT,  Brian worked with OT for 2 hours. They continued to modify the wheelchair. That is quite a process.  OT gave Brian a sip and puff straw that he uses to raise and lower his chair for position changes. He will also use the straw to navigate the wheelchair independently.  We met with the Recreation Therapist so she could get an idea of what outings/activities might be appealing to Brian.  Craig wants their patients integrated into the community, so when he's given the stamp of approval by his docs, Brian will be able to participate.  It's been a rough week for the girls and us.  I think it's sinking in for everyone how long we will be gone. Pray for our strength to get through this journey.  Brian and I are nervous about the future, but we are trying to take things one day at a time.  Sometimes that's very hard to do...so many unknowns, but we trust that God has a plan for Brian. Thank you for your love and support.  I read the comments to Brian nightly and he loves hearing from you all!

Day Eight

Day 8

Today was Brian's best day.  We headed over to the hospital to have a Modified Barium Swallow test.  I'm happy to report that he passed with flying colors and can now eat regular food!  That definitely lifted his spirits.  PT came today and did e-stim on his quads. Brian had a small contraction on both quads from the stimulation. We also toured Craig with the physical therapist.  Brian saw the different gyms and areas in the facility.  OT is still trying to fine tune the wheelchair.  It is quite a process! So thankful for a good day...we both needed it.  Hoping for a peaceful night's sleep.  Thank you for your continued prayers and good vibes.

Day Seven

Day 7

Today was a busy day of procedures.  Brian had an EEG of his brain this morning.  It is protocol because he has 3 cavernous malformations in his brain.  They swapped out his trach for a smaller, more comfortable one.  Brian likes the replacement.  His g-tube was clogged, so we headed back over to the hospital get a new one. 

Day Five and Six

Day Five

Brian did great for the MRI.  Craig is attached to Swedish Hospital through an underground pathway.  The transport there and back was smooth.  Brian got a mechanical wheelchair and OT will work with him to get it properly fitted and functioning.   Speech also came by to attach a TV remote control to his bed.  It's activated by Brian blowing into a straw device.  

Day Six

We got the MRI results today.  The images don't look much different than the last one on April 4th at Barnes.  The swelling reduced, which we thought would be linked to recovery, but that's not the case.  One thing the doctors mentioned was atrophy at C1 due to the bleeding of the cavernoma at C3. Atrophy cannot be reversed because it is loss of cells.  Although this is not news we wanted to hear, the doctors said the MRI shows the structure, not function of body.  Brian will be the better indicator of success than the images of an MRI.  Please keep praying for our family during this difficult time.  

Day Four

Today was better.  Brian got in the chair for 2 hours and his blood pressure handled it.  Respiratory Therapy lowered the cuff on Brian's trach again, so we talked for about an hour.  He sent a video message to the girls and his family.  I started sprucing the place up with photos and décor. MRI is Monday, so pray for positive results.  

Day Three

Day 3 was a bit rough.  When Brian got in the wheelchair to do his cycles of sitting up for 15 min. and reclining for 2 min., he had trouble with his blood pressure.  Brian felt light headed sitting up, so his time in the chair was less.  The doctor said this is common with spinal cord injuries. Brent and Laura worked with Brian to get the communication device up and running. The device is operated by Brian's eye movements. About the time they had it figured out, Brian needed to be repositioned.  We will try again tomorrow. The weekends are more of a time to relax for the patients.  Brian will be back at it with therapies tomorrow.

Day Two

Day Two was good.  Brian worked with PT and OT to get fitted for a temporary wheelchair for him to use over the weekend.  He will get a motorized chair soon.  Brian stayed in the chair for 4 hours, which is really good.  He would sit upright for 15 min. and recline back for 2 min. Brian was excited to wear real clothes too!  Respiratory therapy lowered the cuff on his trach so that he could talk to the girls. They loved hearing his voice! 

Day One

Brian made it safely to Colorado yesterday.  The flight and ground transfers were uneventful, which was a big relief.  Thank you again to Dr. Keyrouz for traveling with Brian. Quickly after we arrived, Brian was greeted by a team of people that will be working with him. He met his OT, PT, Respiratory Therapy, Pulmonology, Dietary, and his doctor.  It was a revolving door of greetings and quick initial assessments. He slept well for the first night in a new environment.  We are looking forward to the future.  Craig seems like an amazing place! Thank you for your continued prayers and support.

Thank You Neuro ICU

It's a bittersweet day to say goodbye to people we love.  We are so excited for Brian to start the next chapter at Craig, but we are leaving our ICU family behind.  Thank you the love and support you've shown us over the past few months.  We will be back to visit!

More Photos of Brian's Journey