ER trip.

Broc has continued to have the blood flecks and tissue in his drain bag at night abd now during the day too.

Sunday morning we noticed a big amount abd then he had a small amount of blood in his g tube too. We made a couple calls to his Drs and it was determined that in Brocs best interest we should head to Cincinnati with him. We packed a bag for Lil Mark and all his meds for a couple days and dropped him off with his Uncle. We arrived in Cincinnati about 5:30pm. Things did not go as planned and needless to say out trip was mostly a wasit of time. We fought to have him sedated for the scope. Drs were not very co operative.

We were discharged around 1am and told to drive home. Yesterday his team found out what had happened and were horrified at what was not done and how everythimg was handled.

They are bringing Brocs surgery forward one week. We will be heading down to Cincinnati next week to hopefully figure out what is going on.

Please keep our family in your prayers as we endure next week. In the back of our minds we also know that there may not be a clear answer for this and that it may be the next step in Brocs declining health.

We have a couple days left for our fundraiser. Here is the link if you would like to support us.
www.booster.com/brocsbuddies4

Here is a pic of what the sweatshirts will look like.

Thank you for all your love and support.

Expected and unexpected trip to Riley

Broc went to see the Opthalmologist on Wednesday. He has been having some pain in his eyes and blurry vision. Well unfortunately there is no cure for what he has as its part of his disease. There are a few things we can do to help ease the episodes. He does also have very dry eyes but just putting in drops everyday is not an option with a kiddo that doesn't even like his face getting wet. It took 3 of us to hold him down for drops to dilate his eyes.

The good news is that he doesn't have any pressure behind his eyes and his optic nerves are in very good health. He could have so many things wrong with his eyes due to all his dx's but thankfully non of them have effected his eyes yet.

Broc will have to wear his glasses as much as possible to rest his eyes and cause them not to strain. The Dr was very knowledgeable about all Brocs dx except for the LTBP 4 Gene mutation which is understandable. With him being the only person in the world to have that mutation its not well studied.

The unexpected part was that once we got home from Riley that evening I was unhooking Brocs TPN and flushing his lines. As I went to push the flush through his white lumen it did this!!

Extremely scary and frightening to say the least. I was thoroughly exhausted from the day and then to find out I would have to get back in the car and drive back again. I was emotionally done!! I made some phone calls to his team and sent them pictures of what his line looked like. Thank you to all the Special Needs moms that gave me advice and helped calm me down. It was decided that we could use his red lumen as he needed his TPN. Thankfully he has a double lumen. As you can see in the pic the red lument is lying against him. 

We were told to be at the hospital at 9am. The drive was very scary. Lots of rain , sometimes so hard you cannot see where you are driving and then icy spots too. Thankfully we made there in one piece. One of Brocs favorite friends met us there. His mom was there to too. Thank you Patrick and Terry for looking after Lil Mark for the day and feeding him. Thank you too for your encouraging words and keeping my heart calm. Unfortunately central lines get weak spots and this is what happened to Brocs line. Thankfully the bubble never burst.

His I.R. Team were all waiting for him. Anesthesia was very concerned about his airway as we are not sure that its completely healed yet. We discussed what would be the best way to intubate him so as to not cause anymore damage to his airway. 

The boys kept themselves busy while I was talking to the team and signing consent papers. This process never phases Broc anymore. As long as they don't use the mask to put him to sleep he is totally happy. Only versed is allowed to be used according to him.

The total surgery took about an hour. They were able to put the new line in the same vessel. This is HUGE because Broc will be on TPN for life we need to keep as many veins as we can for access.

He did really well in recovery. He slept a lot and was just exhausted. 

It will take a week or 2 for his site to heal again. It does bleed with any activity or movement so keeping him occupied on the couch again is not easy. This boy does not like to be kept down unless he is the one calling the shots. 

He had lab work done yesterday and his Hgb has dropped a little, his WBC was elvated too. We did draw blood cultures as he had a small fever too. His belly is giving him a lot of pain today and that will continue for a couple days. Anesthesia shuts down is motility and causes him lots of belly pain and trapped gas. We do our best to keep him comfortable but sometimes nothing works. He just had to wait for it ti pass on its own.

Broc will be having lab work every Friday per his team in Cincy. If his Hgb continues to drop then they want him there before Feb. 

Thank you for all the prayers and words of encouragement and comfort for you all. Thank you too for the cards and kind words. The boys really enjoyed receiving their own cards. 

We are running a fundraiser where you can buy a warm and toasty sweatshirt. There are a couple colors to choose from. Here is the link.

https://www.booster.com/brocsbuddies4

We are hoping that we can catch our breathe before Feb starts and things will be a little calmer. 

  

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.