Tuesday Broc and I headed down to Cincy again. Tuesday we saw GI and Pulm. GI was a great appointment. We spoke at length about Broc wanting to eat little bits here and there. For the longest time we have fought with him cause all he wants to do is eat like a regular person. Who wouldn't want to? We were given food to enjoy it! So it has been decided that he can eat very little at a time but as soon as it causes any pain or discomfort we drain him. That goes for drinks too. Thank goodness cause fighting 24/7 with him about food is getting really old and is so stressful at times. Broc will never be able to eat and survive just on food alone, well until a miracle happens or in the New World. He so longs for that time. TPN will be his source of nutrition until then. Dr Putnam is concerned about his gallbladder and wants to have that further investigated. In August we will head back to Cincy for a couple of scans and tests. If theses tests show anything then it will be likely that his gallbladder will come out. If it has any issues it could likely be contributing to his pain and we all know he doesn't need anymore pain to deal with than he already has.
Seeing Dr Wood was a treat as always. He such a grandaddy of a Dr. He reminds me of my Oupa. He gave us the great news that Broc's lungs look great. He does have Bronchial malasia but there is no cure for that. We still have not found the reason for Brocs out of breathe episodes but thats okay. We will carry on with his pulmicort treatments as it does help him. Dr Wood has discharged Broc as a patient and Dr Moustafa his ped will monitor his breathing treatments. Its always a good thing to be discharged from a Dr.
Wednesday was surgery day.
ENT replaced his ear tube in his right ear as it was MIA. He had so much debri and blood clots that it pushed the tube out at some point. We have had no bleeding so far which is great. He has been doing really except for a small anesthesia fever yesterday. They also found another little notch in his larynx but are leaving that alone. We know Brocs airway does not like to be messed with.
After surgery we went to Dr Risma. She is a new immunology/hematology Dr that Dr Putnam wanted us to see. She feels that Brocs NK Cell Dysfunction is not the reason for all his viral infections and fevers. She is concerned that Broc continues to have low neutrophils and lymphocytes. She is going to study all the data she was given about Broc and speak with his immunologist at Riley, Dr Nalepa. She is hoping that the 2 of them can come up with a great plan for Broc. We may also need to change his fever protocol a little bit too. She feels the fever that we have to take Broc to the ER has to be lowered. Right now if his fever is 101.5F then we have to take him in. She would like Broc to be evaluated at 100.6. Unfortunately this means that we may be there more often but she also said that we cannot just expect every fever to be viral. What if its bacterial and then we don't have him evaluated. So lots to think about. She was also very impressed ( in a medical kind of way) with all the viruses that Broc has had. We will wait patiently for her to call us back with any suggestions she may have.
This is the amazing picture they have hanging in the hematology clinic. Broc had to have a picture with his frogs. 🐸🐸
Thank you to our wonderful friends in Cicny who always take such great care of us.
I will be having a small surgery Friday then hopefully recover quickly as Broc has 2 apps the following week. May 8 will be another big appointment for Broc in MI. There we will map his veins,see how his graft is doing, see how long his legs are and if need be schedule his next vascular surgery.
Thank you to all the people that continue to help us out. We really appreciate your love and prayers too.
