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.