Team Brady is growing!

I spent the morning welcoming the newest additions to TEAM BRADY. It was an incredible honor to meet the students of Mrs. O'Connell's Eight grade class from St. Bernadette's School and personally welcome them to the TEAM BRADY. These incredible young women & men have been offering up their prayers in support of B and fund-raised to purchase their own bracelets. Our family is truly touched by their kind-hearted gesture.




Now, for an update...

Brady went for his six month check up with Dr. Miller today. She was very encouraged by the progress he has made the last few weeks. He tipped the scales at 8 pounds and 10 ounces. That means he has gained more than a pound over the last two weeks -- way to go Bug!! We discussed my concern that Brady has been having frequent episodes where he gags and chokes on his own secretions. The episodes can last as long as ten minutes and often result in significant desats and sometimes cause blue spells. It's something I've brought up during hospital stays in the past but haven't had any luck getting a response to. I think maybe these episodes sound like no big deal until you witness one. Well, B was ever so cooperative and happened to give a live demonstration during our visit. So, Dr. Miller called B's pulmo and they discussed what's been happening. They both feel Brady needs deep suction at home and have already ordered it, to be delivered today! They also decided that he needs to have a swallow study done - we tried once before but Brady was admitted that day for jaundice - and that he needs an ENT eval. Those appointments are being coordinated by the peds office and we should get that done soon. Suction will be delivered tonight and VNA will be here tomorrow to show us how to use it. I feel so much better knowing we will have a safe way to clear his airway when he has trouble! Otherwise, since coming home he has done amazingly well. All his labs have been stable and March 31st will mark two whole months with NO TRANSFUSIONS!! I honestly can't believe it! Dr Higman likes to remind us that right now, he is riding the Rituxan wave so to speak and it's very likely he'll relapse at some point but for now we're just enjoying a little less time at the hospital.

Next week we finally have our intake meeting with the Medicaid RN to continue the process of getting Bug a homecare nurse. We're really hoping it won't be too much longer. Nights have been the hardest part for Tim and I. Between Brady waking frequently, having gagging episodes, desats, IV meds, etc. we don't get much sleep -- we're both exhausted! In the meantime, we've been referred for a few hours a day with a home health aide. Hopefully, that will make it a little easier to manage all that needs to be done during the day. Right now B gets meds six times a day, he is on a twenty-four/seven feeding schedule, he gets IV medication 12 hours a day, we need to perform GJ tube care every eight hours, he needs his PICC lines flushed every twelve hours, we need to vent his G tube for half an hour every three hours, he gets his temperature, respirations, and heartrate checked twice a day, and we need to weigh him daily. Now we'll be adding frequent suctioning to the list. Admittedly, Tim and I have gotten pretty good. We can handle a lot. But even if we had no other responsibilities that is a lot to manage. Factor in three other kids, the house, laundry, cooking, his work schedule... and forget it! We're barely treading water. It's overwhelming! We're just trying to hang on while hoping that help is on the way soon. So keep your fingers crossed and say a prayer that we get approved for the help we need!

As always, thank you for your continued support. Without all of the help and prayers and well wishes we would be truly lost!

With Love, The Getty's