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!
Monday, July 30, 2018
Monday, July 23, 2018
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!
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!
Sunday, July 15, 2018
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.
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.
Monday, July 9, 2018
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!
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!
Thursday, July 5, 2018
Day Seventy-Nine through Eighty-Four
Day 79-84 (June 29-July 4)
It's been a busy week. Brian did well in therapies. Last Thursday and Friday, he tolerated the Erigo machine and standing frame without additional blood pressure meds. That was awesome! Unfortunately, Brian's low blood pressure has given him a run for his money the last few days.
Brian's mom, brother, sister, and brother-in-law came in town for a visit. It's always nice to be around family. When they were here, we took a trip off-campus to a restaurant in walking distance. It was the first trip out with NO staff.
Our discharge date is July 18th. I'm feeling anxious because we still have areas to solidify before we leave. Once we discharge from inpatient, we head over to the Craig apartments for outpatient for a month. We will be transitioning to independent living in the apartments. I'm not sure of all the specifics with the transition program, but I believe Brian will continue outpatient OT and PT.
We were absolutely humbled and overwhelmed by the Night at the Races last Friday night. Thank you for attending the event or supporting our family even if you were unable to come. So many family and friends work countless hours to make the event perfect! People commented on the love they felt for our family that evening. Brian and I laughed and cried the whole evening as people sent us videos and pics.
Thank you for your good vibes and prayers as we finish out this leg of our journey!
It's been a busy week. Brian did well in therapies. Last Thursday and Friday, he tolerated the Erigo machine and standing frame without additional blood pressure meds. That was awesome! Unfortunately, Brian's low blood pressure has given him a run for his money the last few days.
Brian's mom, brother, sister, and brother-in-law came in town for a visit. It's always nice to be around family. When they were here, we took a trip off-campus to a restaurant in walking distance. It was the first trip out with NO staff.
Our discharge date is July 18th. I'm feeling anxious because we still have areas to solidify before we leave. Once we discharge from inpatient, we head over to the Craig apartments for outpatient for a month. We will be transitioning to independent living in the apartments. I'm not sure of all the specifics with the transition program, but I believe Brian will continue outpatient OT and PT.
We were absolutely humbled and overwhelmed by the Night at the Races last Friday night. Thank you for attending the event or supporting our family even if you were unable to come. So many family and friends work countless hours to make the event perfect! People commented on the love they felt for our family that evening. Brian and I laughed and cried the whole evening as people sent us videos and pics.
Thank you for your good vibes and prayers as we finish out this leg of our journey!
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