A Great and Busy Week

A Great and Busy Week (Oct. 25, 2018)

Brian and I had a great week!  We were out and about almost every day.  On Tuesday, we went to Maddie's Student Led Conference at her school. The staff was extremely accommodating to us and were even waiting at the door for our arrival.  Maddie was so proud to have her dad there too!  That made him feel extra special.  I had to chance to be swabbed as a possible bone marrow donor while we were at her school.  Check out "wil ohler’s fight with leukemia #wilswarriors" on Facebook to read about how a Lindbergh High School senior is fighting a battle with cancer and needs to find a bone marrow donor.  There are several locations having bone marrow drives in the upcoming weeks.

On Wednesday, we took a trip to see our Edward Jones advisor.  That night, friends came by the house for dinner.  It was nice to get caught up on the latest and greatest with them and enjoy a glass of wine too. :)

Thursday was Abilities Awareness Day at Crestwood Elementary.  I haven't been back in the building since Brian unexpectedly took a trip to the ER last January.  I was excited, but nervous to see everyone because I knew it would be a reminder of how life was prior to Brian's injury.  However, Brian and I were welcomed with hugs and smiles from the students and staff.  Brian gave 4 presentations to 3rd, 4th, and 5th graders.  He talked about his injury, how its impacted his life, and how we choose to live with JOY each day. The students were absolutely amazing and asked such thoughtful questions. I'm so proud that Brian wanted to speak to others, especially because we've only been home for 2 months.  He loved every minute of the day.

We also got to meet Officer Flamion and his wife, Sarah.  Sarah has helped me so much with the many questions I've had about doctor recommendations, daily living, and just the complexity of caring for someone with a spinal cord injury.  We enjoyed lunch with them after the presentations and look forward to visiting again soon. 

Like always, we thank you so much for your love and support. Can't wait for another great week!

Our New Normal

Our New Normal (10/10/18)

We continue to adjust to our new life.  I think we will never fully understand how drastically life has changed, but we are getting through each day with the best attitude we can.  We have more up days than down.

Brian's health remains good.  He has PT coming to the house three days a week for range of motion stretching and neck strengthening exercises. Nursing stops by to check in and draw bloodwork once a week.  In the new future, we will transition to an outpatient PT program that will help Brian continue his recovery.

We've had a great few weeks.  My brother came into town for Brian's birthday. We haven't seen him since we left Craig hospital. Brian had an awesome visit with a former co-worker and got caught up on all the scoop in the industry.  We hosted a game night at the house and hosted several family gatherings. Kenzie had homecoming and Brian was thrilled that she wasn't embarrassed to have friends come by for pictures. 

We have been test driving two vans and hope to finalize the purchase this week.  So far, we've taken trips to family members' home to see if Brian can enter using portable ramps, saw our niece's soccer game, made a trip to Ted Drewes, and picked up Maddie from school.  Freedom feels so good! 

We want to thank everyone again for your generosity throughout this journey. Here is an update of  how your donations (private, GoFundMe, fundraisers) have helped us cover some of the costs we are incurring: 

$33,000: Home renovations to accommodate Brian's power chair
$21,500: Backup generator, updated electrical panels and circuits for medical equipment
$20,000: Down payment for a used accessible van. Very limited options due to the dimensions of Brian's chair including the ventilator tray. 
$5,400: Motorized garage lift to enter the house
$1,500: Elevator feature on Brian's chair.  This allows him to communicate "eye-to-eye" with others.  If recovery progresses and he regains movement, it will also help him reach items in the cabinets.
$1,500: Voice activated technology with microphone
$500: Voice activated SMART home modifications
$500: Portable ramps
$400: Monthly prescriptions
$2000+/month (out-of-pocket cost) home health care (a few hours a day, Monday-Friday).
$$: All bills/medical supplies not covered by insurance

With that being said, we are excited to announce that we are in the planning stages for our First Annual Brian Heine Benefit Golf Tournament.  Mark your calendars for Thursday, September 26, 2019 at the Legends Country Club in Eureka, MO.  More details to come. Brian will be active in planning a day of fun for all!

Please pray or send your good vibes for Brian's continued improvement, strength, and mobility.  We prepare for today and remain hopeful for things to come! We are grateful to our supporters. 

A Night at the Ballpark

A Night at the Ballpark (10/10/18)

This is a past-due update...we had the pleasure of attending the Cardinals game in the press box on Sept. 2th.  We chatted with Cards broadcasters, Dan McLaughlin and Al Hrabosky.  Dan talked about Brian during the broadcast that night. Click on the video below to hear it! (Don't mind the crying baby in the background...lol)

Here are a few pics from the evening.  A special thank you to Brian's brother, Jeff, for arranging the evening and Dan Farrell for making it happen.  People are so kind.

Another update coming shortly!

The First Few Weeks

9/15/18

The first few weeks have been good.  We are quickly establishing a routine for morning and evening transfers.  The medication schedule is working well...minus the time I accidentally took a Sudafed instead of giving it to Brian.  Sleep deprivation can do these things to you...lol

We have been out and about to four different doctor's appointments and a trip to Joey B's.  We are renting a vehicle for each outing and hope to purchase our own very soon.  It's not too fun being stuck at home, but luckily we've enjoyed great weather outside!

Being in the comforts of home have been wonderful, but also hard for Brian.  I think he's understanding the realization of his situation and the things he can no longer do like yard work, errands, petting the dog...all the little things we take for granted.  We work through the down days and focus on the good.  Brian can navigate the computer, phone, TV, lights through voice activation.  It allows him independence to do things on his own.

Brian's health has been good, which is a HUGE blessing!  Blood pressure can still be tricky, but manageable.  His breathing has been better with the humidity of St. Louis.  Who would've thought we would look forward to humid days?

Thank you for your continued love and support through this journey.  It's great to know we have an army of supporters behind us.

#heinestrong

We Made It Home

We Made It Home

We are home, safe and sound!  I landed last Monday with the team from Craig, and Brian came home on a MedFlight on Tuesday.  Maddie had teeth pulled the day Brian landed, so she was home for his arrival.  Unfortunately, Kenzie had to go to school, but was home within a few hours of him landing.  

It's been a very busy week unpacking boxes from the home renovations, working with the Craig team, visiting with family, and adjusting to our new life.  I would say, overall, things are going very well.

When the Craig team was here, we practiced morning and evening transfers, troubleshooted equipment issues, and went on an outing to the middle school and the high school.  These are two places we will be in the future.  We are in the process of looking for a van that fits Brian's chair best.  Hopefully, we will have our own transportation sooner than later!  

In-home nursing and PT stopped by last week.  OT will be visiting for the first time today. 

It's so good to be home....with the kids, the pup, our family and friends. We cherish so much that has been taken for granted in the past.   

Thanks for your support and continued prayers for a smooth transition and continued recovery for Brian. We thank God for the blessings He's shown us, and pray for more to come!

Day One Hundred Twenty-Five to One Hundred Thirty-One

Day 125-131 (Aug. 17-23)

It's our last weekend at Craig! We are getting close to home.  I fly out with a team from Craig on Monday to get things organized at the house and set up supplies.  Brian takes a MedFlight home on Tuesday and should arrive in St. Louis around 1:00 in the afternoon. 

This is definitely a bittersweet goodbye.  While we can't wait to get home (Brian hasn't been home since January), we've met the most amazing staff and families.  For the past few days, there have been final farewells to nurses, techs, and therapists.  So tough and a constant lump in the throat.

Craig Hospital has prepared us for our next step in the journey. Brian can direct his care so well and I've learned nursing and respiratory skills.  We cannot thank the staff enough for helping us through a really hard time.

Although we leave Craig, Brian will receive OT and PT.  We will start out in the home and then hopefully transition to outpatient once we get settled in.  With Brian having an incomplete injury, we continue to hope for progress and recovery with time.

Thank you from the bottom of our hearts for the love and support you give us.  I will update everyone once Brian lands on Tuesday!  #heinestrong

Day One Hundred Seventeen to One Hundred Twenty-Four

Day 117-124 (August 7-16)

I'm not sure how ten days went by without an update.  Could've sworn I snuck one in there.  LOL

Latest news:

We are headed home soon!  We decided to forego the original plan to transition to the apartments after staying in-patient due to Brian's pneumonia.  If Brian doesn't pull any shenanigans, the plan is for me to fly home with a team from Craig (PT, Respiratory Therapist, Nurse) on Monday the 27th, and Brian will take a medical flight home on the 28th. We are so excited (and scared), but are SO ready to come home!

Brian is doing well.  The docs increased his steroid and are trying to lower one of his blood pressure meds.  Overall, his blood pressure has done pretty well, although he likes to sneak a few low ones in from time-to-time. Brian is still working hard in his therapies.  His neck is getting stronger and hopefully soon, he can get rid of his head pads.  He's keeping a positive attitude and making the staff laugh every day.


It's been a tough week for me.  School started for the teachers on Monday. It's always fun to be part of the excitement of Rah-Rah day and a new school year.  I miss everyone terribly.  I can't wait to see my Crestwood family. The girls went back to school today and we always have a tradition of getting our first day of school pics together.  I know they are little milestones, but I sure hate missing them.  Kenz is a junior this year and Maddie is an 8th grader.  Year 23 for me.  Should be 24, but I took a year off when I had Maddie.  :)

Elsie (the pup) starts her journey home in the morning.  It has been the best therapy having her here for the last six weeks.  My sweet brother is road tripping again to KC and then our KC besties will meet my mom and the girls in Columbia to bring her home.

Exciting news!  There's another member of the Heine clan!  My niece and nephew had their first baby, Carter James, last night.  Her twin sister had a baby a few weeks back.  It's going to be fun watching the babies grow up together.  They look so cute in pics and we look forward to meeting them in person.

Keep the prayers coming for Brian's stability so that our journey home can happen. Thanks for all of your support!

Day One Hundred Eleven to One Hundred Sixteen

Day 111-116 (August 1-6)

Quick update:

We are still at Craig.  Brian is getting the IV antibiotic for pneumonia. The antibiotics seem to be working, which is great.

Rough night and afternoon yesterday.  Brian's pacemaker was indicating different rhythms.  That hasn't happened before, so the doctors decided to do an EKG throughout the night and extensive bloodwork. His potassium level came back very low, which can be problematic to the heart.  Brian's getting additional IV potassium and potassium supplements.  Thankfully, the level has come back up for now. The blood pressure is still giving Brian trouble.  They will increase his steroid to see if that helps. Because of these latest glitches, we will be at Craig for at least the remainder of the week.

I'm not sure how Brian's instability will play into our future transition plans.  His team will meet tomorrow to discuss options and where we go from here.

For our prayer warriors, please pray for stability.  We want to come home, but only when Brian is medically stable.  I pray the doctors can figure out the reason behind our latest issues so that we can move forward.

Day One Hundred Four through One Hundred Ten

Day 104-110 (July 24-30)

Well....we were getting all geared up for discharge last week, but we've run into a few glitches.  Brian started a seven day antibiotic that wasn't completed until Saturday morning.  The docs wanted him to complete the course in the hospital since he was getting it through the IV.  

As we were moving our things from the hospital to the apartment on Friday, we discovered the bed that was ordered for Brian was too small.  Unfortunately, our room was at the end of a hallway, so a larger bed couldn't be swapped with the smaller one. We weren't able to get an apartment that could accommodate a new bed until today at the earliest.  

Today, Brian's blood pressure was really low.  After bloodwork and a chest x-ray, the doctors have decided to treat Brian for pneumonia. It will be another 7-day IV antibiotic, so it looks like the Craig staff is stuck with us for another week.  Hopefully this time next week, we will head to the transition program. 

Obviously, we hate that Brian is fighting an infection, but I'm glad they discovered it at the hospital rather than being at the apartment.  

Thank you for your support and prayers.  I will try to give an update in the next few days!

Day Ninety-Six through One Hundred Three

Day 96-103 (July 16-23)

Last week started off a bit rough. Brian's blood pressure kept dipping low to the point he was passing out several times.  After a 48 hour EKG and lots of bloodwork, the doctors discovered his cortisol level was low.  Brian started a steroid at the end of the week to raise the level and hopefully help the blood pressure improve.  So far so good...

Brian's mom and sister, Susan, arrived last week.  It's been awesome having them, the girls, and my mom out here.  Everyone is learning the ropes when it comes to transferring Brian and his daily cares.  I'm amazed at how Kenzie and Maddie have jumped right in without hesitation!  I'm so proud of them. Susan spent the nights with Brian during the visit so I could get a little shut eye outside of the hospital and hang with the girls and Elsie! That was such a blessing, thank you Susan!

Brian had a visit from his co-worker on Sunday afternoon and my mom's friends brought some dinner to us Sunday night.  I know Brian enjoyed talking shop...he loves his job!

Brian is doing well in PT.  His head continues to strengthen.  Today, Brian's therapist noticed his pectoral muscles firing for the first time in the C5-C8 level on the spine. That was exciting. We will take any improvement we get! 

Brian got his personal wheelchair.  I'm sure this doesn't come as a surprise, but it needs some tweaking...lol.   The chair isn't properly charging his ventilator so that's the first order of business. Everything else is just minor tweaks.

We discharge from inpatient on Friday. Of course, we have mixed emotions. You get so close to your team of therapists, nurses, techs, and doc.  When we go to the outpatient transition program, we will start with a brand new team.  We will be in the transition program for 2-4 weeks living independently in the apartments during that time.  Rumor has it that we will head home on August 24th, but I don't know if that date is confirmed. 

The most exciting part of our week was welcoming our Great-Nephew to the family.  Nathaniel Brian arrived early Sunday morning.  We can't wait to see him!  

Have a great week!  Thank you for your support and continued prayers!

Day Ninety through Ninety Five

Day 90-95 (July 10-15)

We've had a great 6 days with lots of visitors.  Beth, my dear friend since childhood, came for a few days.  She saw Brian in action and was impressed with his spirit!  Our other good friend, Tony, stopped by to see Brian for a few hours on Friday before he headed home to St. Louis.

Friday afternoon, we took an outing to a St. Louis style pizza place with our Occupational Therapist and the Recreation Therapist.  Brian loved getting off campus and he loved the pizza...no surprise there...lol  That afternoon, the girls and the Hays bunch made it safely to Denver from KC. A special thank you to Eric and Tammy for taking care of the girls for a week!  

I stayed at my brother's house Friday night and Eric stayed with Brian. I wish I would've recorded Elsie's (dog) reaction to seeing the girls and I together. She was so excited!  That hasn't happened since April.

Saturday evening, we took our first outing without any Craig staff to my brother and sister-in-law's house.  They knocked down their shed and made a pathway to the backyard.  We had a BBQ, watched the dogs and kids mess around.  It felt good to be "normal." 

Our new discharge date is July 27th.  From there we will head over to the apartments next to the Craig campus for the transition program.  Brian will continue to receive therapies and we will work through any issues we have when transferring, doing everyday activities etc.  We will be in the transition program for 2-3 weeks and then move to outpatient from there.  Unsure if outpatient will take place at Craig or in St. Louis.  That will depend on therapists' recommendations.

Blood pressure continues to keep us on our toes.  Typical for spinal cord patients, but nerve-racking nonetheless. We have mixed emotions about nearing the end of inpatient.  Brian and I are VERY ready to get home with family and friends, but we are nervous too.  I pray that I can take care of Brian...there is so much involved with his daily care.

Have a great week!  As always, thanks for your support and prayers.

Day Eighty-Five through Eighty-Nine

Day 85-89 (July 5-July 9)

Brian hasn't been feeling too great this past week.  His blood pressure has been lower than normal and his lungs are gunky too.  On Saturday, the doctor did another bronchoscopy to clean out the left lower lobe of his lung.  He has a few bugs growing in his sputum culture, but they are holding off on antibiotics for the time being.  Brian also had an infected ingrown toenail which can be problematic since he can't feel the pain.  Luckily, the podiatrist was able to fix the situation.

On a good note, Brian paced for 4 hours on Saturday and 4.5 hours on Sunday.  He could've kept pacing, but needed to eat.  :)

On an even better note, Elsie (our dog) is here!  My sweet brother flew to Kansas City to get her and drove from KC to Colorado yesterday.  It was so good to see Elsie...she's very confused about what is happening, but she lifted our spirits!

The girls are spending the week with our besties in Kansas City.  Eric and Tammy will have the joy of 4 teenage girls in their home for the week.  Good luck!  The whole clan will get here Friday.  We are looking so forward to seeing everyone!

Say a prayer for Brian to bounce back to normal so we have a great week of therapies.  Thanks for all of your support!