It was very challenging trying to fit 7 years of information into 2 hours but we tackled one subject at a time. Some of the things were discussed were very serious and others were not so bad. I think that is one reason why we decided to blog after we had some results. We didn't want to scare anyone unnecessarily or worry anyone. It was extremely stressful as parents waiting for those results. Unfortunately the Dr had a family emergency and couldn't get back with us as soon as she wanted which made it even worse for us. I finally spoke with her yesterday and as far as she can see we are not looking at any leukemia or lymphoma. Broc is having some numbers which are out of the ordinary but others are in the normal range so he is definitely not going by any textbook and once again writing his own novel. This is proving to be very difficult for his drs.
They will be looking at possibly adrenal insufficiency, many auto immune diseases etc. They are also digging deeper into the coagulation issues that were discovered in January during his vascular surgery.
Another thing we will be investigating is the fact that Broc has an issue with anemia. We know he is not bleeding internally anywhere that can be seen but she thinks that perhaps he is is loosing microscopic amounts in his stool so we have to check periodically to make sure that is not the case. Broc does take an iron supplement already so once his surgery is over we will stop his supplement and see how low his levels go. The Dr thinks that possibly his body is not absorbing the iron that he is eating so we may be looking at a malabsorption problem so we would just have to continue with supplements or he would have to have iron infusions if things got worse.
Broc went back to the hospital this morning for another slew of blood work. All these tests that Broc is having now are all new and have never been checked before. We have tried for so many years to see a hematologist but no one wanted to take on Brocs case as he is so complicated. Immuno and Hematology and GI are proving to be a wonderful team for Broc. They are all at the same hospital and work very closely with each other.
This was yesterday at Brocs immunology app. Lil Mark was feeling under the weather yesterday and his asthma was crazy so we all spent the day together. Dr H has a plan again for steroid therapy before and after surgery for Broc so that we can hopefully avoid an eosinophilic reaction. We may also be adding an allergy med because we think he may be having an allergic reaction to something that is given during the anesthesia process as well.
On another note we had our circuit assembly last weekend and took a few pics.
This is how Broc spent the morning session of the assembly. Poor Buddy is is building his strength slowly every day.
For those that are interested, this is the feeding tube that Broc will be getting. He will be having his surgery in 2 weeks. I will be posting hourly updates on that day as well as daily updates.
Thank you everyone for all your love,prayers and support.
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