WOW!!! I cannot believe its been so long since I have had a minute to sit down and type on Brocs blog. Facebook and IG are much easier and quicker but I realize there are some that don't have social media so they rely on the Blog for info on Broc.
Where to start. Our Buddy has been admitted to Cincinnati Children's every month and twice in July. No-one really knows what is going on. In the beginning it was thought that Broc was having fluid overload as his face was swelling and he was having higher than normal blood pressures. After much testing and 2 hospital admits to rule out his heart and kidneys and a visit to the nephrology dept it was determined that there was no answer as to why he was having facial swelling. At times it would be worse and his eyes almost closed from the swelling. They tried to decrease his fluids but his body did not like that at all. The Drs realized it made no difference to his facial edema as well. So if our Buddy looks more puffy in the face he is probably in an immune flare and having a rough day. His blood pressure has increased since he had Covid 19 in January so after all the testing we will just watch it closely. When we see Cardiology in Oct they will decide if its effecting his heart function. If that is the case he will go back on blood pressure medication.
Brocs immune system is puzzling everyone. It is flaring every week. The flare starts late Wed all the way through to Monday. Weekends are the worst for him with chronic pain, fatigue and other symptoms. Since Broc got ill in June with a pnuemoperitoneum things have not been great. His liver enzymes have been increasing and lowering as well as many of his other numbers. No one could figure out why he got it. No source of infection was found but thankfully it cleared with IV antibiotics. Broc has a really tender colon since this infection. They have stopped his formula and he is only getting pedialyte through his J tube. He was unfortunately admitted 2 weeks later with a fever and another unknown viral illness. His liver enzymes were elevated again as well as many other labs. Unfortunately he was admitted again this time he was extremely sick and septic. The concerning part is that no-one knows what made him septic. He did recover again with IV antibiotics. He also had to be given Vit K injections to help with his clotting as his INR was elevated too. The continuing elevation of his liver enzymes and GGT are concerning. He will be having more testing this week and if they are still elevated then he will be having another abdominal ultrasound. His previous one 2 weeks ago revealed sludge and tiny stones in his gallbladder.
He had a colonoscopy and endoscopy while he was inpatient last time. It revealed that he has a significant amount of eosinophils in his stomach (body and antrum). The number 15 is the upper limit and Broc has 100. His team have so far decided to stop all food and drink for him to give his stomach time to rest and heal. Even though he is draining his G tube 24/7 he will still not be able to have anything. This is incredibly difficult for Broc. Not even being allowed to have a sip of water or an ice chip. We are on day 3 and he is doing incredibly well. We are trying to be as thoughtful as we can with our words regarding food and drink. If you are around Broc we ask that you please do the same. They will be scoping him again in October when we go back. The results of those biopsies will decide if he needs to start treatment.
The UDN is still looking into all kinds of things for Broc. His UDN team is very helpful with keeping in contact with us about any changes. They are contacting a Dr in Japan who is studying a variant of one of the genes that Broc has. They are also waiting for the initial phase of testing to be completed before they can continue on the next phase.
He will be seeing his urologist in 2 weeks and undergo some testing to see if we can figure out why things are not working like they should. Unfortunately that may lead to surgery but we are hoping not.
In October he will be seeing his orthopedic surgeon to see if his right leg has grown long enough for them to remove the plates out of his left knee. They said there is a small chance that they maybe able to leave the plates in and let him continue to grow. This will be great as we would not like to put him through more surgeries. One less is always a good option. He is 5ft10 now and continues to grow!
Everyday is a blessing with Broc. No-one knows why he is sick and what is making him sick which makes finding a treatment very difficult. Keeping Broc comfortable and as pain free as we can is key. His pain team is doing a great job with that. We are still being told that he maybe the only one in the World with his disease. We don't know how much longer we have with Broc. We are very thankful in knowing that one day Broc will be healed and be able to live the life he was meant to live and enjoy all the food and drink he can without being sick.
We thank you for all your continued love, prayers and support. 🐸🐸🐸🐸
