Day 2 in the hospital

Today was a busy day. We had a few Drs come in early in the morning then a few more came in around mid morning. By then they still had not heard from any Drs but they did have the results of the KUB and his CBC. His KUB was almost the same as yesterday still full of air and the contrast was still there nothing had moved. Broc was still having ice chips and IV fluids. His CBC was not good this morning as all his numbers had dropped again.

Once again Broc is bordering neutropenia. He does have some energy which he uses to play the wii games. Looks are very DECEIVING!!! The Drs that know Broc can tell that he is not his usual self. We did have fun playing bingo today as well as Trivia. Broc did so well in answering most of the trivia questions. It was a fun activity to take his mind off of being in the hospital.

We did learn later today that Broc is fighting Cytomegalovirus (chronic or a re-activation) as well as Epstein Barr Virus (chronic or a re-activation) and possibly Parvovirus B19. We are still waiting for the Parvovirus results to come back.

For any person 1 virus is enough to deal with but 2 possibly 3 is crazy!!  They are not treating the Cytomegalovirus as the treatment can be very toxic to your organs so unless you are severely ill with extreme high fevers will they treat you with it. They did however draw a lab to see how much of the virus he does have in his body so depending on that number they will decided what to do. There is no treatment for the EBV. If he does have the Parvovirus we are not sure what the treatment for that is either. The plan for now is to see what his CBC looks like tom and go from there. He did run a small temp this evening so they will keep an eye on that.

Onto his feedings. He did pass a little gas this afternoon so we started his feedings at 5mls per hour. He is doing really well so she is at 30mls per hour already. We are hoping that he will tolerate them well throughout the night.
Dr Zaidi did come by to talk with me about his motility or the lack ther of. Broc has a new dx of intestinal dysmotility. We will be going to Cincy for testing to see the extent of his intestines and how badly they have become. We have a new plan in place that when Broc gets ill with a virus he is to go on gut rest which is stop the formula and only run pedialite until the virus is better and his intestines are moving again. If he cannot handle pedialite due to severe pain and dry heaving and nausea then he will have IV fluids at home. That is the main reason he ended up in the hospital was due to severe dehydration. Our main aim is to give Broc the best quality of life. So far he has needed up with a pseudo obstruction every month this year. He cannot spend a week in the hospital every month. It is very unsettling for him, his brother and our family is separated once again.

If he is having really high fevers and there are other issues then we will come to the hospital but we are going to try and manage as much of his care at home as we can.

Once again we will be finding a new normal. Broc has a great team that really cares about him and our family too. We want to thank everyone for all your help,love support and prayers.

If you come and visit us at the hospital please make sure that you are not ill as Brocs immune system is very weak right now and it will be very hard for him to try and fight off something else.