This past week has been a week of scary moments and a realization of the blessings in our life.
For some who followed on Facebook this will be a recap, but over the years I found that the blog is a great record for me to refer back to when I can't remember information, so I need to make sure I have the information here.
When Alex woke up Sunday morning he wasn't feeling well, but he has had an increase in schoolwork and has been staying up late to get all his work done so he thought he was just run down. Around lunch time he took some Advil because he still wasn't feeling great. He called me at 1:30 and asked that I give him a stress dose of his steroids and some Zofran. I agreed but told him we needed to check a temperature. He didn't want to because he didn't want to go to the ER, but by this point he was visibly shaking, and I didn't give him an option. His temp was 101.4 so I quickly made arrangements to drop Maddy at one of my good friend's house and we headed to the ER. Alex triggered a sepsis alert, so we were quickly taken to a room. he was given fluids, IV steroids and labs/cultures run. Labs didn't look terrible, but we couldn't get his fever to break, and a full respiratory panel was negative, so the decision was made to admit him. We finally got up to the floor around 8:00 PM. I let the nurse know we needed a hospitalist ASAP because he was feeling worse and we needed orders for dextrose and steroids at a minimum. The nurse and charge nurse both called the doctor multiple times and were told that he was busy and would come up when he had time. By this point Alex's temperature was up to 104, his blood pressure was dropping to unsafe levels (80/40) and he knew he was not okay. Several times I let the nurse know that we needed help and if the doctor didn't come soon I would need to take action. At this point Alex became extremely unsettled. He told me he was pretty sure he was dying and started giving me messages for Maddy, Bruce and his friends. We prayed and he asked me to read him scripture. I made the decision to call a FAST which is a rapid response call which means a Dr., charge nurse, pharmacist and respiratory therapist all have to come immediately. They did, but the Dr. was the slowest moving physician I have ever seen. Alex and I both stopped being polite and respectful and demanded action. It took me digging an emergency card out of Alex's emergency kit for them to order more steroids. The doctor came back an hour later concerned because Alex's blood pressure had dropped even lower and hos oxygen saturations wouldn't stay above 90. he let me know he was calling the PICU doctor and if we couldn't stabilize him we would move to the PICU. Luckily, a combination of oxygen, steroids, Advil and the next dose of antibiotics all kicked in and got him to a place where we were comfortable keeping him on the floor. Shortly after that the doctor came back again to let me know he was growing gram negative rods in his blood culture. (For my non-medical friends, bacteria is either gram negative or gram positive. to oversimplify...Gram negative are usually gut bugs and gram positive are usually skin bugs like staph). Alex's nemesis has always been Klebsiella which is a gram negative bacteria. He has had 5 or 6 infections of klebsiella and almost dies 3 of those times. It is the bacteria that we are most fearful of and what led to us agreeing to Ostomy surgery in 2017. To say Sunday evening and night into Monday morning was scary would be an understatement. Had we not called the FAST I do not believe Alex would have survived the night. He knows his body and he knew he was not okay which were backed up by his declining vital signs. It is incredibly fortunate that we got to the ER within an hour of spiking a fever and because of his history he got his first dose of the correct antibiotic within 3 hours of becoming ill.
Alex started to turn the corner on Monday and by Monday evening was fever free and feeling okay all things considered. By Monday we knew he was once again fighting Klebsiella. The infectious disease doctor was one of our most trusted doctors and we came up with a plan to hopefully still allow Alex to go on his fall break trip with his classmates.
On Sunday when I dropped Maddy off she was heading to a church event at the park. Towards the end of the event, she became lightheaded, dizzy and passed out cutting up her knee. I am so grateful to Kristal and Ryan for taking good care of her so I could focus on Alex. But it is safe to say that Sunday was not a great day for the Beckwith's!!!
Alex made it home on Thursday and is heading back to school today. As of now it appears that he will still be able to go on his trip. He will finish up antibiotics on day 3 of his trip so he should be covered.
When Alex was younger, he averaged about 100 nights a year in the hospital. Before this week he had gone since 2021 without an ER visit or admission. That is by far the longest period of his life. This week was hard in so many ways on all of us. It was a wakeup call and a reminder of how fragile life is for all of us but especially for medically fragile children. When we tell people the kids can go from fine to fatally ill in a very short period of time that is not an exaggeration. And while physically this week was not as bad as many of our admissions, emotionally it took a toll on us. Poor Maddy didn't want to leave the hospital on Monday because she was scared Alex would die and she would never see him again. It breaks my heart that both of my children have had to grapple with the fear of death at such a young age.
But this week also reminded me of what matters in this world and how much love we are surrounded by. Kristal took Maddy on Sunday without a moments hesitation, Monday she headed to school and got some extra love from her teachers, Tuesday she spent the whole morning at the barn with her coach and barn family. Alex and I were able to spend some time with friends we have made through the years at the hospital. We both had friends check on us throughout the week and offer prayers and to help if we needed anything. And Alex's professors reached out to let him know that they were praying for him and would help him catch up on work when he returned. We had some AMAZING nurses this admission and were able to spend quite a bit of time sharing our story and our testimony and being reminded of God's call on our life.
Thank you to each of us that held us this week in love and prayers.
Ali
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| Pictures from Fairytale Ball |
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