What a Week!

This week was truly more than Alex and I could ever have dreamed of. He texted and sent pictures each day and we spoke a few times and each message I received was full of joy and excitement about the day's adventures! In true Alex fashion he started the week not knowing anyone but had made good friends and endeared himself to the faculty by the end of the week. 

Saturday was a travel day so not much to report other than Alex did a fabulous job navigating security without me there (He travels with HUGE amounts of liquids from meds to his IV fluids and TPN). Sunday was the freedom trail, and they worshipped at the Old North Church which is where Paul Revere signaled the British were coming by sea and not by land. They also saw the site of the Boston Massacre, the Massachusetts State House, Paul Revere House, and the Bunker Hill Monument. They had lunch at the Green Dragon where the constitution was drafted and dinner in Little Italy. 

Fauniel Hall

Top Of Faniel Hall

Samuel Adams

Old North Church in background

Paul Revere

Site of the Boston Massacre

Monday, they spent the day at the JFK Library. It was one of Alex's favorite days. 

Bunker Hill Monument

Tuesday, they toured Harvard. (He said he likes DBU better) and then took a drive up the coast to Rockport. In Alex's words, "Rockport was heaven on earth". He would have stayed there the rest of the week if he was allowed!

Wednesday brought a Harbor Cruise and then a visit to Adams National Park to see the home and library of John Quincy Adams. 

USS Constitution

Adams Library

Harbor Cruise

Thursday, they toured Walden Pond, Louisa May Alcott's Home and the sites of the battle at Lexington and Concord.

Battle of Lexington and Concord

Louisa May Alcott's Home

Walden Pond

Friday, they toured Yale University. Alex was extremely impressed with the library which holds 500 million books and the first Guttenberg Bible. In the afternoon they went to Mount Tom State Park.

Guttenberg Bible

Alex called me from the airport to let me know that he felt like he was sick, but that it was worth every minute! He is home and doesn't feel great, but we are hopeful he is just run down from a crazy, busy week. 

Thank you for everyone who prayed for him over this special time. We also have another prayer request. As most of you know Alex is alive because of TPN (IV Nutrition delivered through a permanent IV in his chest that feeds into his heart). Along with his TPN that runs over night he uses IV fluids all day. During Hurricane Helene a Baxter Facility that manufactures and stores 60-70% of the IV fluids for the country was damaged and is offline. Hospitals are conserving Iv fluids and postponing elective surgeries, but this is a scary time for those that rely on these fluids for their life. Please pray that this facility can get back online ASAP and that in the meantime Alex's infusion pharmacy can find another source of his necessary fluids.

Ali

Milestones and growth

 

Alex and I last night

Over the past year and a half, I have watched in awe as Alex has reached milestones and conquered firsts, we never could have dreamed were possible. This morning marked yet another one. Alex is flying out this morning with 4 professors and 19 other students to spend a week in Boston touring historical sights, going on a harbor cruise, seeing a few ivy league schools and taking a trip up the coast to Maine. This morning as I kissed him goodbye, I was overcome by the miracles God has worked in his life to make a day like today possible. This is the prayer I prayed over him:

Gracious and Loving God- Be with Alex today and throughout this week. Surround and protect him. Let him feel your presence around him. As he looks around this week and experiences new amazing adventures, may he be reminded of what a gift these days are and the miracles you have worked in his life. Lord, I pray that his life and his story glorify and praise you as he continues to impact those around him through his words, his actions and his joyful spirit. In your precious name.

Amen

I told him I hope he has the time of his life. If only we could all have his determination and courage. He signed up for this trip because it sounded fun and interesting. He doesn't know anyone on the trip. But I know Alex...by the end of the week he will likely have a handful of close friends, and he has already made a strong connection with one of the professors. What a blessing it is to be his mother!

My Maddy Moo has hit some pretty big milestones this week as well. This week she has begun Cantering and is now cantering (English) and loping (Western)in every lesson, even group lessons! This from a girl who 4 months ago was too scared to even ride in an English saddle and often cried when asked to take part in group lessons. Mandy has made such a huge difference for Maddy. Her kindness, her encouragement and her no pressure approach has led Maddy to get back to total joy while riding and having very little anxiety at the barn. She continues to work hard and is making huge strides all the time. One of the things Mandy does that is different is when her riders reach a certain level if they lease horses and ride multiple times a week one of their rides is a "pro ride". During this ride they are asked to plan and make decisions and work with their horse on what they would like or feel they need to work on without being told what to do. Mandy (or another coach) is there for safety or to answer questions, but the riders are in charge. This week Maddy had her first pro ride, and it accomplished exactly what we hoped. Maddy struggles to make decisions because she doesn't want to make the "wrong decision". I let her know that Mandy would not be mad at her for any choices, but if there was something she didn't agree with she would explain to Maddy why a different choice would be better. When we got in the car on Thursday following her ride, she was so proud of herself. She said," Mommy, I did it. I made most of the decisions!" As I have said many times therapeutic riding is about so much more than learning to ride. It is these life skills that are so important. Our switch to Stable Strides has been amazing in every way. I am reminded that while change is hard, God's plan is always for our good and what a beautiful example this is. 

This week please pray for Alex to have an amazing time and for his health to stay stable (and that he remembers to send his mother pictures)!

Ali

Silver Linings

 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

Pictures from Fairytale Ball

Alex is once again fundraising for Cook Children's hospital! Here is the link if you would like to support his campaign: https://www.extra-life.org/participant/Alex-Beckwith