An update on our Brocoli

So may things are going on right now I'm not sure where to begin or what to say. This past episode with Broc having the ruptured artery was extremely scary. I think it will take some time for our family to work through it. Every time Broc coughs or chokes which is still happening quite often, we think its going to happen again. Lil Mark is especially effected by this and his anxiety takes over. He is trying so hard to deal with this and unfortunately it has made him very aggressive and overly protective of Broc in a way that is very annoying to Broc. It will take time as Mark learns how to communicate his feelings about this. The more he talks about it the easier it is becoming. As a mother I don't think any of Brocs other health issues have hit me this hard. Almost loosing him and fighting so hard for him was extremely stressful on Mark and I. Then having to deal with his extreme blood loss was another struggle. I think with Heart Surgery its almost expected to have a complication after surgery, but after having a cleft repair which is a simple surgery this rare, never happened before ever, complication is not supposed to happen. To say we are hanging on by a thread is an understatement. We have just not had a break with Broc in a while and it finally takes a toll on your body.

This month he doesn't have any procedures so it will consist of building up his counts which I'm happy to say are coming up very nicely. The EPO really has worked well for him besides all the painful side effects it gave him. We are catching our breathes. Broc is having some more issues so he will be seeing more of his specialists coming up. We will be heading to Riley this week to see Opthalmology for his eye pain and blurry vision. He is still having issues of being out of breathe and they think that it is not blood count related anymore so he will be seeing Pulmonary Dept for some testing. We have also put a call into his Cardiology team to see if that app needs to be brought closer.

Broc has been having very bad knee pain on both knees. His OT and Ped have hoped that if we stabilize his ankles it will help with stabilizing his knees and cause less or no pain. He was evaluated for ankle braces called SMO's. They will take about 3-4 weeks to come in.

In Feb we will head back to Cincy to have a look at his last cleft repair and pray that it had held this time and also look at the spot where the artery was causterized. We are hoping that both of these places have healed well as he has continued to have some tissue and blood streaks in his drain bag.

In March he is scheduled to have his Angiogram at C.S.Mott in Ann Arbor ,MI to see if they can find the blockage in his right leg. We are hoping that it can be ballooned open and that he will not need anymore further intervention. We know that Broc loves to throw us surprises so we will patiently wait and see what those results will reveal.

He will need a new  GJ tube sometime in April too. His team is looking at a more suitable central line for him and hoping that it will be available by then.

We have also launched another booster. This time for sweatshirts to keep us warm and cozy with this chilly weather. Here is the link for it. www.booster.com/brocsbuddies4

Thank you for all your love,prayers and support.