Hi everyone, it’s Brittany again! I managed to get away this weekend for a quick trip to stay the night with Amanda. It wasn’t long enough… bestie time never is. The hard part isn’t sleeping in a hospital room chair, the hard part is leaving. And the leaving part is actually two-fold: first untangling myself long enough from my mom duties to get to Houston, and the second part is at the end of the stay when I have to leave my best friend. Everything in between is easy and that’s pretty much sums up our friendship, hard to get together but so easy when we finally do. For someone who is a self-professed introvert, who gets emotionally exhausted after spending time being social in any form or fashion, it’s interestingly the exact opposite when Amanda and I are together. Her friendship energizes me. It brings me peace and joy. It’s just easy. I hope everyone has a friend like that.
During this stay Amanda and I had plans to try some embroidery, but the visit was just too short. I arrived Saturday just before dinner time. Amanda, Barkley, and I visited for a while before Barkley headed out to get a proper night’s sleep in a hotel room. The tiny recliner in the tiny room wasn’t made for a person of Barkley’s stature and could have been categorized as undue punishment for a person his height. Before leaving us, Barkley organized all their belongings and gave us a run-down on things in case Amanda was assigned a new room in the middle of the night. He also left us with strict instructions on what we should be asking the Hospitalist Doctor when she made her rounds the next morning.
Amanda and I ordered dinner from one of our favorite restaurants and rather quickly settled on a mini-series on Netflix that we thought would entertain us just long enough during my short stay. We made it through almost 5 of the 6 episodes before we called it a night… but not before we packed up and moved rooms just before 11:00 pm. Just the small amount of walking from one room to another skyrocketed Amanda’s heartbeat and caused her severe chest pain. I can’t even begin to imagine how frustrating that is – even when she is performing basic tasks in turtle mode (super slow speed) her heart beats so hard and so fast it’s as if her heart thinks she is being chased by a bear. It’s as if her heart is stuck in fight or flight mode. Can you imagine constantly running for your life, even when you’re NOT running? Can you imagine your heart running for your life even when you’re trying to sleep at night? And Amanda endures it with kindness and still finds the time to show others God’s love and grace. She continues to amaze me.
Thankfully, I think Amanda and I both got some rest in chunks throughout the night. We fell asleep around midnight after moving rooms and the night nurses left Amanda alone until 5:30 am or so. It also helped that there wasn’t the constant beeping of the monitor since Amanda isn’t presently in the ICU. She has a portable monitor/battery pack that transmits information to monitors at the nurses’ station. After the early morning nurse entourage, we both made a valiant effort to go back to sleep and surprisingly slept until 8 am sharp when the Engineering Department came over the intercom to announce they would be performing life-saving tests followed by beeping alarm sounds. It worked much like an alarm clock and we were both wide awake. Good thing because Amanda’s Hospitalist Doctor walked in right after, and we conversed with the doctor about getting Amanda some oral pain options to try BEFORE they released her from the hospital. This doctor seemed stuck in hurry mode. I’m sure she has a lot of people to see, however it makes it hard to advocate for Amanda’s needs when the doctor already has one foot out the door. I advocated a little harder than Amanda did and at one point told the doctor that often when Amanda’s in pain she will say it’s a six (out of 10), but it’s really way worse than that. I think the doctors need to hear from other people – somehow it humanizes their patients, so they aren’t just a name on a chart and box to check on a long list of rounds. Later, when Amanda and I were talking about it, she explained that the worst pain she’s ever felt was just after the transplant, so her logic was if that’s a ten, then she isn’t lying about being at a six. I quickly informed her that the pain after the transplant would be off the charts (15 or 16) and so it didn’t qualify as a data point on the current pain scale! I guarantee you this: Amanda is the sweetest AND toughest cookie you will ever meet.
After the visit, I headed out to pick up our liquid breakfast at StarB’s. I had plans to introduce myself to Dennis the Security Guard as “Baby Bark’s Substitute” for the day. On the way there I prayed a prayer I’ve been praying every morning for the last few months – that the Holy Spirit would be with me, that my eyes, ears, and heart would be open to be present and available to be used by God if so needed. I’ve found this prayer to be very powerful and I encourage you to give it a try for a while. You will be amazed at how you are able to slow down and see things more clearly. I want to share my full interaction with Dennis and the lessons I learned throughout the day in a second post titled, “Defining Success,” so please take a moment to read that when it comes through.
After I returned with coffee in hand, Amanda and I chatted. Coffee and friendship is an amazing combination! After our coffee date, Amanda got up to use the bathroom, wash her face, and brush her hair and that was all it took for her heartbeat so hard she was in pain again. She called for a nurse and after receiving some pain medicine, Amanda noticed the time and we logged in to watch the live stream of church at First Baptist Church in Brackettville. It was a great sermon and planted some seeds that you will see in my next post. Also, be sure to watch the replay if you missed YJ’s sermon live (linked at end of post).
After church, I made a run to pick-up a pizza and a salad for us to share at lunch. It worked out perfectly and Amanda seemed to eat more than usual – which is good! As we ate lunch, we resumed our mini-series and went ahead and started episode 5 completely over since both of us were dozing off by the time we started that one late the night before.
Barkley arrived around 2:00 bringing in an afternoon StarB’s treat and he was well received by us both. Amanda was in pain again not long after. Quick back story… earlier in the day, Amanda’s day nurse had come to give her medicine and left as usual but then almost immediately walked back in the room and wrote her work-issued cell phone number on the white board and told Amanda she could call when the pain got bad. Now back to the present, Amanda was in pain again but instead of calling the cell number, Amanda pushed the regular call button on the bed and waited patiently. With this method, the Nurse Manager at the Nurses’ Desk will page for Amanda’s nurse but if Amanda’s regular nurse is in a room she may not hear the page from the hallway, and then it will take longer because the Amanda’s nurse will have to eventually make her way to a screen where she will receive a notification of Amanda’s request. This is why it takes forever. Anyway, I could tell Amanda was in a lot of pain. I asked her, “Why didn’t you call the nurse on her phone?” Before Amanda could fully answer, Barkely said, “She never does!” Here’s my one complaint… sometimes Amanda is too nice y’all. So I picked up my cell phone and dialed the number myself (without asking). I ended up calling twice with no answer, but her nurse called my number back not long after. I explained the situation and she arrived very quickly. In their defense, the nurses on this floor have way more patients assigned to them than the nurses in the ICU, so it was a blessing for this nurse to give Amanda the ability to call her directly for priority care. After her nurse arrived, Barkley brought up the oral pain management plan again, and this nurse was all-in and ready to help. She wanted to make a plan, timing out the oral meds and she was going to call the Hospitalist Doctor to request a new oral medication be given. I honestly saw a change in this one nurse while I was there – I can’t quite describe it but Amanda had her favor in the end. God is good.
With the yucky weather and long drive home, I felt the tug to get on the road just after 3:00 pm. I really didn’t want to leave – my visit wasn’t long enough. Even with the less-than-ideal venue, our visit was good for our souls. I hope Amanda is able to go home this week and rest in the comfort of her own home and then we can plan for a Bestie Sleepover Part 2.
Please pray for her today – that the doctors and nurses will work together to help her manage her pain from home over the next few weeks. Pray that Amanda and Barkley will travel safely to and from Houston over the next few weeks for the weekly doses of anti-rejection medication. Pray for Amanda’s doctors and nurses to truly see her and hear her – that Amanda would have the best of the best care and attention to her case. I’m also praying that her care team would think innovatively. Amanda’s case is so unique, something they’ve not seen before. If so, let there be divine inspiration for those involved. And please pray that God would continue to give Barkley and Amanda peace and strength, sustaining them through this season. Thank you!
Pastor YJ’s Sermon (First Baptist Church Brackettville): https://www.facebook.com/share/v/1K6wMA9ufz/?mibextid=wwXIfr
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