Post Op Day 4

Yesterday was truly a whirlwind and roller coaster all in one. Brocs blood pressures were really high yesterday, his fevers were elevated again and he was much sleepier than usual. Cardiology came to consult with us and get all the info on his history. There plan was to watch him till last night with blood pressures and if they raised again then they would consult nephrology. Well they did stay high last night too so today while he is having his MRI they are checking his kidney function as well as aCBC  to check his eos count and platelets too. Immunology will be consulted too along with Dr Harris in South Bend to figure out a plan to see what will be done once we are home to handle his eos count,fevers and other immune responses that he is having.
If his platelets have not rebounded to where they would like them to be heamatology will be consulted too.
He drank more yesterday and also 1 bottle of formula. He is supposed to be drinking 4-6 a day to keep up with all his nutrition. His belly is still distended. It was looking better yesterday morning but by last night it was all swollen again. He has been having miralax everyday and they gave him something else yesterday too to help his belly wake up. We may have to do more today. We are going to see if he can do without the morphine today and only use the toradol and start Valium. He is getting loratab for his fevers as well.

This time round has really been a rough ride. They are struggling to find access for him. Many of his veins have blown and now while anesthesia was putting him to sleep he said that his IV is not working well so they will put in a new IV for him while he is under. Thank goodness for that as Broc is starting to get very vocal about getting lab draws and other things done. Normally he doesn't mind at all,he would just lay there but Friday night it took 4 of us to hold him down.

I feel so bad for him because January's surgery is a major surgery where he will be in ICU for a few days and then on the floor for about a week. But with all the new issues we are having with this surgery we honestly don't know how it will go. We have been told by the team that it will probably be worse as every system in his body seems to be more and more effected with each surgery.
We have also been told that when you walk into his room and see a little boy playing his iPad he looks like your typical 7 year old healthy little boy but inside he is a very sick little guy.

There are lots of things to figure out today. Once the MRI is done we will know more and also once the labs are back. Here are a few pics from yesterday. The JOY in our day yesterday was that we got to face time with Daddy and Lil Mark. It was so nice to see there faces and hear all about what Lil Mark has been up to.

I will post another update once we have spoken to the drs and got his results back.
Thank you for all the love and support that we have been shown from all over the world.