New Beginnings

 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.

  

A New Diagnnosis & Family update

 We did find out what our buddy has. Some of you may have read about it on his Facebook and IG page. If not Broc was diagnosed with Primary Sjogrens System. This is another disease that affects his whole body. Organs, cells and tissues. Unfortunately he has another disease that does that too called Mitochondrial Disease. And yet another one called Ehlers Danlos Syndrome. Many people that have Sjogrens only have Sjogrens and not 2 other diseases that affect your body.

This disease still doesn’t explain a complete diagnosis for Broc. The Undiagnosed Disease Network is still looking. There are treatment options for Broc to help calm down his inflammation in his body. We are really hooping this will help with a lot of his pain. His new team are hopeful it will help to calm down his immune system from attacking his body.

This week the boys and I spent a week in Cincinnati seeing a couple of specialists. Broc’s Rheumatologist was hoping for Broc to see the Bone Marrow Transplant Team as they will be an integral part of his treatment but the Dr that we wanted to see is not accepting new patients so we will patiently wait for a phone call to see another BMT Dr in a couple weeks. Once he has been evaluated by them only then can he start treatment. 

We also saw the Colo-rectal team to see if Broc will be a candidate for a procedure that may alleviate some of his belly pain. Unfortunately we found out that Broc is not a good candidate and that relief cannot be guaranteed. His belly pain is all due to his immune system. Every time it flares his whole gut shuts down and air gets trapped which causes immense pain for him. Unfortunately his disease leaves him very thirsty and a very sore but drinking anything even water causes severe pain and distention. 

Dermatology took a sample of Brocs toe nails to see if there is a bacteria that we can treat. If not then we will continue with all the creams, filing down his nails and vinegar soaks. Unfortunately there is not much that can be done for Brocs toes. We will continue to use the topical creams when he gets cellulitis infections around his toe nails too. He was given the option to have his big toe nails removed but speaking from experience that is very painful and not something we want to add to Brocs plate right now.

GI and Advanced Nutrition Team who manage his TPN are making small changes to his TPN recipe. They are concerned with the huge increase of steroids that Broc will start too, so keeping his calories on the lower end for now. They are a little concerned about his bone density as it is on the extreme lower end of the spectrum. Something that they will be keeping a close eye on. 

Mark saw Brocs Rheumatology Dr as well. He doesn’t have Ehlers Danlos like Broc and I but has Hypermobility Syndrome Disorder. His score wasn’t high enough for him to get an EDS diagnosis. He does have iron depletion so he needs to start taking iron supplements as soon as possible to help replenish his stores. Eating iron rich foods is not enough for him. He is also needing to be evaluated for Autonomic Dysfunction. We are hoping that because he is close enough to an adult he will be able to see my cardiac Dr for Neurocardiogenic Syncope or POTS. He will also be seeing OT and PT for his extremely tight muscles and flat feet which runs in the family. He will be seeing them when we go back in November.

In the meantime my health has been taking some strain. Keeping up with all Brocs needs and then some has been very taxing on my health. No getting enough sleep is also a huge culprit. Broc requires medication every 3 hours around the clock so that leaves me with only a couple hours of sleep at night. I have been diagnosed with Seronegative Rheumatoid Arthritis. I have started treatment but it’s not working as well as they had hoped so we are in the process of getting another medication approved. We all know insurance has their own timetable. 

Thank you for all your continued love and support.