Adjusting to a new normal

We have been home for 12 days now. Broc is doing really well with only being allowed a clear liquid diet.
He does get a little hungry and then he has some chicken broth but he ends up getting full so quickly that a meal for him is just a couple of spoons. He is still struggling with his energy level. His now sinus infection is not helping with that either. He has had a cold virus since we came home from the hospital which I think he started while we were there cause he did have a sniffly nose and sore throat. His fever has continued all week and he started getting a headache with face pain. We had his labs checked and his WBC was a little on the high side for Broc so we thought something may be brewing. Friday was his ENT app as he also started with some ear pain and his ped had said that it looked like one of his ear tubes were not in the ear drum as they are supposed to be. We are also keeping an eye on his Hgb and Hct levels.

Once the ENT listened to Brocs happenings since we saw him in December he was amazed at all that had happened in Jan. He also saw that both of Brocs ear tubes were not in the correct place and are on there way out of his ears. With the cold virus possibly turning into a sinus infection the collective decision was made to put Broc on ABX to prevent any ear infections. Unfortunately Brocs ears do not drain properly so if there is any fluid build up it will cause him more ear infections. If this continues to happen again then he will have to have another set of ear tubes put in. This will then be his third set.

We also found out that the genetic labs that Dr Eliason wanted drawn for Broc were not drawn at the hospital so we will have them done this week when we go for his weekly labs. We are also in the process of getting an appointment to see a heamatologist. There are lots of weird things going on with Brocs body as well as some of the labs we had checked for his hypercoagulation. These results can be very helpful to us when he has his Open Heart Surgeries in the future.

We also had a meeting with Brocs school about him returning with all his new equipment. It was a great meeting and everyone involved is eager to learn and help Broc have a good quality of life. The school will discuss with the children before Broc comes to school and explain how he will look different. Broc and I will visit the school as well to see the children and teach everyone how to use his feeding pump and what to feed him. Once we have done all of this then Broc will go to school for the morning only for a few weeks. Once we think he is ready then he will go full day. He will still be under restrictions for gym class and recess until 6 months after his surgery. We are hoping that once we see Dr Eliason in June for a check up he will say that Broc will not have to wait the full 6 months as I know how devastated he is that he cannot once again ride his bike during the Summer Break.

We are still being very careful around crowded places and all the nasty viruses that are out there at the moment. That is why Dr Moustafa has recommended that we wait until March before Broc returns to school. Until Broc goes back to school I will continue to work through all the papers with him that his teacher sends home with Mark.

We will be seeing G.I. on Friday and then Broc will hopefully be very close to his goal rate for his feedings. So far he has tolerated the increases in his rate very well. He has not had much belly pain nor nausea. Before his NJ tube belly pain and nausea was something Broc lived with on a daily basis. Many times he would actually not eat a meal cause his belly hurt so much. His eos level was really low on Thursday which was wonderful. Both GI and Immuno are thinking that the food allergy was making his eos level higher for a longer time. None of this is text book by any means and all Brocs Drs know that all of this is trial and error. We are very thankful that his team of  Drs have realized that Broc is writing his own book and many of his testing and treatments need to be "outside the box".

Thank you everyone for your continued support and love and prayers. We really appreciate all the help you have given us.