Wow. It's crazy to think its been a year since I wrote a post here. Well I guess updating Facebook and IG is sometimes just easier.
Anyway, onto all the new updates. Our time with Cincinnati Children's has come to an end. It was getting too far for me to travel and we were looking for a hospital to transition to for adult care as Broc will be 18 next year. Wow, I cannot believe my baby will be 18. Its been 17 long years but we wont change it for anything! We have learned so much on his journey.
Brocs new team is incredible. They all have 1 goal and that is to keep Broc comfortable and let him have the best quality of life we can give him. His new hospital is close enough that he wont need to take anymore helicopter rides unless its a serious emergency. Another benefit is that the family can visit him whenever they want to which is so important.
We found out that Brocs Cardiologist from Riley will be retiring in the next year or so, so we moved his care closer to home too. After seeing his new Cardiologist we found out that Brocs heart is stable with his Aortic Valve being in the mild to moderate range. He will continue to see him yearly.
We have gone back to his old Immunologist in the meantime and then will transfer closer to home next year. For now he has started Broc back on IVIG and then his new Dr will continue his care. This is something Broc will be on for life as his Immune system is just not strong enough to fight off viruses and other illnesses. Everytime different Drs try and take him off of IVIG his Immune system takes such a hit and then he starts having low grade fevers again and other symptoms. He has really been struggling the last 6 months so we are really hoping that after a couple months of having the IVIG in his system things will start turning around for him.
His neurologist had some serious concerns when Broc went to visit her because he has had an increase in his pain as well as his headaches and been falling a lot. Broc will be having a brain and spinal MRI on Dec 26 to see if they can figure out what is going on. It maybe that he will need another neurosurgery but we are really hoping not.
He has a wonderful new GI team that finally understands the way his GI system works and for now is willing to help him as best they can. We did find out that unfortunately Brocs small bowel and large intestine do not function like they are supposed to. With the help of the surgery team and his new GI they have come up with a great plan to help Broc. Well it may not seem like a great plan to have such a big surgery, in Brocs case it will greatly benefit him and his GI system. Otherwise he will continue to have bowel obstructions and continue to need surgeries for that. They will do a colectomy on his large intestine and then he will have an ileostomy. This will help decrease his trapped gas and intense belly pain that it causes for him. His large intestine gets so full of air that it unfortunately pushes all the way up into his ribs causing him severe pain all the time. This surgery will be on hold until we find out if Broc needs neurosurgery or not.
His eyes are really having a hard time because of all the inflammation in his body. We do drops daily to try and help as well as every 3 hours. His new Rheumatologist has decided not to put him on any meds for his Sjogrens at this time as it wont really help with the symptoms that he has. For now we are just treating symptoms and waiting for more testing to come back.
Well that is all the big updates for now. Thank you for continued love and support for our Buddy.
