Tough day. The transplant doctor called today. He wasn’t as happy go lucky as he has been. Normally when I talk to him, I am at ease with the results of the cath. Not so much this time. With the changes in his cath, he instructed us to keep a very close eye on Braden for any symptoms. We do this already and document when things happen, but Braden is no longer as stable as he has been. Transplant could still be some time away, but its probably closer than we would like. I have prayed he could make it another 5 years, but now i have doubts. I hate this feeling so much! For those that have asked, he is not listed yet because he is able to function with the heart he was born with. As long as his body tolerates his own heart, they are reluctant to list him. A transplant is no cure. It is exchanging one set of problems for another. He is currently on 2 medications a day (4 doses a day) After transplant, he is looking at up to 14 or so meds per day. This takes a huge toll on kidneys. That could ultimately lead to kidney failure and needing a kidney transplant. We have lived in fear and worry of the unknown since i was pregnant with Braden. He took an extra long time for his heart to start beating, then at 18 weeks we found out about his Cystic Hygroma and were given a choice. We chose life. At 22 weeks, we got the confirmation of a heart defect but it was operable and he would live a normal life with periodic cardiology check ups. Well after his first surgery, its been one issue, after another, after another. I would not trade my life for anything. I love my son with all my heart. I just wish I could take the pain and fears away from him. Thank you all for continuing to pray for Braden and for us. It truly means the world to us. -Matt, Michelle, Carder and Braden
Sweet B has been junky since Wednesday evening. He ran a fever Wednesday night into Thursday but has been fever free since. I think he is finally on the mend. I felt so bad, he missed story book day at school. He has a jake and the neverland pirates book he just loves and a costume to match. We have just stayed in the past few days letting him recover. I ordered him some washable face masks to wear to the grocery store since that typically where all the germs seem to be. I attached a few pictures from our week. Snuggles with mommy, his Halloween costume arrived and we went to the book fair on Monday. He enjoys his books! Thank you all for the love and prayers.
Braden has had a great past few days. He is LOVING school and has recently started riding the bus in the mornings. He thinks its the coolest thing ever. I don’t mind much either since it gets me out of sitting in car rider line in the morning. The line is seriously CRAZY. Braden’s cardiologist appointment is coming up at Pediatric Cardiology Services. I always get so nervous before these appointments. Many have asked why Braden is not yet listed for transplant if he is so bad. While his condition is critical and he is considered end-stage, he remains stable. As long as he is stable, they do not want to list him. With a transplant, it does not bring a magic cure. He will be on meds life long that can damage his kidneys. Transplants only last on average 10-15 years so the longer they can wait, the better it is for Braden. If y’all have seen him, he is nothing like what his chart says he should be.
Braden started Physical Therapy last week and loves it. While he doesn’t need standard Physical Therapy every week, he does need muscle therapy. He doesn’t enjoy his massages, but its definitely helping his extremely tight muscles. His new therapist Peggy at Milestone Pediatric Therapy Services Inc is great!
B had a fun day! We went out to the football field for the Jamboree to raise money for our JHS cheerleaders. He bounced, slid, hand painting and for some Swirlee’s Frozen Yogurt. He still won’t let anyone paint his face. He is hypersensitive when it comes to anything near his face and mouth. He had his favorite pizza from Little Caesars too!
B had a great day at school today. He had a rough night though. Sensory overload. Poor baby couldn’t get himself settled down..lots of yelling and screaming and crying…finally got my sweet boy to bed.
I forgot to update. B is still coughing quite a bit but his fever seems to be gone now. He has a pretty nasty ear infection that is draining causing all the coughing. With some antibiotics , he should start feeling better soon thank you for the love and prayers. So glad it wasn’t anything serious! I watched him So close last night.
Miracle Treat Day at our local Dairy Queen to benefit Children’s Miracle Network. We had a blast!
Tomorrow is Miracle Treat Day at our local DQ Jefferson Dairy Queen / Orange Julius. We will be there 12:00-1:30 with Tripp Halstead Updates and back in the evening to co-judge the blizzard eating contest. Stop by and say hello and support CMN! Here is our family photo from last year at the event!! B is doing ok. Still has a terrible cough from drainage but he does seem to be improving. School is going great and he met his new physical therapist today. There are some concerns so we will be following up with his orthopedic specialist to obtain more x-rays.