A Wish Come True: Ashlyn's Angel Heart
Some of you may remember the Bohrer family. They were nominated and selected to be the recipients of the 2017 NSBC BTBL Family Support initiative. The dad, Tom, is a Sergeant with the University of Minnesota Police Department. Mom, Angie, is a member of BtBL. They have 4 children; their oldest, Ashlyn was born with congenital heart defects and was placed on a heart transplant list earlier in 2017 after exhausting all surgeries and medical treatments.
With the help of generous community donors and supporters, BtBL was able to host a joyous Christmas celebration in December and shower their family with love, gifts and monetary support to assist with medical bills.
While we couldn’t give Ashlyn a new heart, we made sure that she and her family felt how loved they are. With her parent’s permission, we wanted to share that earlier this week Ashlyn received her angel heart!
The first 96 hours of her journey to receiving her new heart is truly a miracle. There is still a long road ahead for Ashlyn and her family. Please take a few minutes of your day to check out the following excerpts from the last couple of months leading to these first few days with her new heart. Warning: you may want to grab some tissues first. It’s an amazing story. We also invite you to support her family by following her FB page for continued updates and donating to her fundraiser for ongoing medical expenses.
WAITING FOR A NEW HEART For those of you new to her journey, here's a little background as shared by her mom, Angela on the Ashlyn's Army Facebook page. Ashlyn celebrated her 16th birthday in March of this year.
March 23, 2018 - Meeting with new transplant team in Milwaukee “It’s been a long day, and we are happy to be on our way home. We started bright and early this morning with labs at 8am, then echo, psych and social work, pharmacy, nutrition, palliative care, X-ray, ultrasound, then met with the transplant coordinator again to sign papers and finalize our follow up appointment in six weeks. We feel really good about this team. Ashlyn said she wants to be transplanted in Milwaukee. Now I don’t know if that’s because she feels safe in that hospital or because they showered her with compliments and have a super cool teen room...but I am happy she feels comfortable there. They certainly made a good first impression with all of us. The Wisconsin team will go over everything with the surgeons early next week, and the coordinator will call us when the listing is transferred to Milwaukee.” April 9, 2017 - Day 207 on the transplant list “Ash had a good appointment this morning. All her labs and imaging look the same as they have for several weeks. Stable is a perfect place to be while waiting for her new heart….Ash is officially listed for transplant in Milwaukee, and her almost 7 months of wait time has been transferred there. Since our drive is quite a bit longer now, we’ve been working on an exit plan. When we were listed here, we had the luxury of only being 30 minutes from home. A quick run home to feed/let the dogs out or grab clean clothes was completely feasible. Not so much anymore. I’m sure we’ll get everything worked out, but it is overwhelming to think about. We head back to Milwaukee the first week in May for a checkup.”
Earlier this week, exactly one month from being moved to the list in Milwaukee, the Bohrers received the phone call that could change everything for Ashlyn. AN ANGEL HEART FOR ASHLYN April 23, 2018 @ 1034 hrs - Day 221 on the transplant list “This morning at 12:45 we got the call that they have a heart for Ashlyn. We arrived at the hospital around 7 am and have spent the last several hours in the CVICU. Ashlyn is having some last minute tests to make surgery and recovery go smoothly and there are no surprises. There is always a chance that when we get to go time, there is a change of plans. There are many factors that make a heart transplant successful, so they won’t go through with anything unless they are confident the donor heart is strong and a good match. We do NOT have a timeline for today. She could have surgery this afternoon or later on this night. Right now there is a family experiencing a horrible loss. Please lift them in prayer. Their choice to donate their child’s organs is saving Ashlyn’s life. They are literally living my worst nightmare.” April 23, 2018 @ 1645 hrs - Ashlyn is taken back to the Operating Room. April 23, 2018 @ 1915 hrs - "Everything is a go. The donor heart looks good! They will start her incision now so she is ready to go on bypass when the new heart arrives. It will likely take 1 1/2 hours to get through the scar tissue in her chest. She is stable. @ 2012 hrs - The heart is almost here! They are through the scar tissue, and she will be going on bypass in about 20 min. We are trying to keep ourselves busy. Keep praying. She’s doing great!" April 23, 2018 @ 2144 hrs - "She is tolerating things well. Her angel heart has not quite arrived, but should be here soon." April 23, 2018 @ 2327 hrs - "Ashlyn’s angel heart arrived in the OR about 10 minutes ago and the surgeons are beginning to place it now. It really is overwhelming to think about what her little body is enduring right now. Meanwhile, we were placed in a private waiting room in order to have some privacy and according to them get some rest....yeah right. Actually three are resting, one teenager is on her phone, ones watching a movie, and I’m staring at the wall. 7 hours in the OR and many more to go." April 24, 2018 @ 0059 hrs - "Out with the old and in with the new. The new heart is in! They will continue to monitor and perform tests to ensure that it is working properly including conducting an echocardiogram in about an hour." April 24, 2018 @ 0202 hrs - "Ash and her new heart are doing great. Her new heart is pumping and looking good. She will spend the next several hours being monitored in the OR. The team is very happy with how everything is progressing. They have told us to get some rest. The next update won’t be for a few hours. Thank you all for praying! She is doing wonderfully!"
April 24, 2018 @ 0754 hrs - "Look at that no pacer spikes! She’s doing well. I’ll know more after rounds." April 24, 2018 @ 0820 hrs - "After getting a few hours of sleep at the Ronald McDOnald House, I was able to see her for the first time this morning after 15 some hours. Despite all the tubes, wires, and pumps around her, she is looking good. She currently has two very talented nurses by her side who are coordinating her care and keeping her comfortable. That is all we as parents can ask for." April 24, 2018 @ 0916 hrs - "Mama wanted to listen to her angel heart....first time of many I’m guessing. Pretty special to witness." Watch and listen for yourself over at Ashlyn's Army. April 24, 2018 @ 1910 hrs - “Ash has remained stable all day. She did have a couple short runs of ventricular tachycardia that prompted them to start another medication, but they told us that it’s not uncommon. They told us a transplanted heart can sometimes be “agitated” at first which could trigger this. Her potassium has also been running a bit low which doesn’t help. Her kidneys have been awesome at making urine and her pressures have been stable. She is still sedated. She opened her eyes for a few seconds while being repositioned, and nodded when the nurse told her he was going to put something on her tongue, but otherwise she is out. They plan to start weaning the sedatives overnight and pulling her breathing tube tomorrow if all goes well. The team is very happy with where she is right now, but we’ve been warned to get our rest because she will surely hit some bumps as she continues to recover. She’s a complicated kid... The rest of the kids are doing well. They impressed me with their poise and composure last night. I am so proud of how they are handling everything. They are reaching the end of their rope though...lack of good sleep and being cooped up in the hospital is taking its toll. We ate family dinner at the Ronald McDonald House, and they are burning off some energy on the playground. Hopefully everyone will get some descent sleep tonight. We are so overwhelmed by the outpouring of support. Thank you for all the messages and prayers."
April 24, 2018 @ 2023 hrs - “I just had come back to the room after eating with the family and saw that Respiratory Therapy was in the room. The RT nurse explained that they were going to change out the tape holding her intubation tube…As they were changing it out they were explaining to Ash everything they were doing so that she wouldn’t be frightened or agitated. She opened her eyes a few times and nodded in agreement. Anyways, I had to snap this pic because as they were changing out the equipment she was gently patting the “heart bear” with her right hand. So adorable and it made me smile. What a kid.”
April 25, 2018 @ 1037 hrs - “Good morning everyone. We just had a good milestone happen. Ash has been extubated and is breathing on her own! She did such an awesome job."
April 25, 2018 @ 1505 hrs - "Less than 48 hours out and she is sitting up at the side of the bed. She is my Hero."
April 25, 2018 @ 2300 hrs - “It’s been an eventful day! Removing the tube went well, but it was so scary to watch. I’ve seen her extubated many times. You would think it would get easier, but each time it seems worse."
April 26, 2018 @ 1319 hrs - “This afternoon PT is going to help her sit in a chair! She is actually asking to sit up more, so I think she’s good and ready. They are going to remove a couple lines as well, including her 7 month old PICC! She’ll be happy to get rid of that! This morning Liz Collin from WCCO Channel 4 FaceTimed us about Ashlyn. She said they will run her story on the 5pm news!" See it on WCCO here.
April 27, 2018 @ 0900 hrs - “Chest tubes are staying another day, but she’s pushing through the pain and sitting in the chair. They are going down on the milrinone and discontinuing the lidocaine drip(this was for the v-tach, and she’s not had an episode for almost 48 hours). Today is all about moving around, doing her breathing exercises, and getting some food in her belly." A heartfelt thank you from the Bohrers Please know that Tom and I are SO grateful for all of the prayers, well wishes, and support we have received from you all. This is such an overwhelming journey, and we certainly could not do it on our own. Your prayers are so powerful. She is doing so much better then anyone anticipated, and you all are a part of. Thank you so much.” Keep updated on Ashlyn's progress here. Support the Bohrer family here.
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