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

Lessons from Brady

Someone asked me an interesting question today. They asked if having a child with complex needs has changed me and how. It has absolutely changed me.

Lessons from Brady

He has taught me that I am strong; that I can do so much more than I ever thought I could.

He has taught me how to endure. That the bad does eventually give way to moments of goodness, even if they're fleeting. Keep going because those moments are priceless. Those moments are worth the struggle.

He has taught me to love with my whole heart.

He has taught me that laughter heals. Even when things are bad it's okay to laugh. Actually, it's important. When everything seems to go wrong and the day seems endless and the exhaustion is all consuming a good laugh really does make me feel better.

He has taught me to forgive. A person is flawed but people are good. Everyone makes mistakes. They say the wrong thing. Do the wrong thing. But most often, they make up for it ten fold if you give them the chance. And even if they don't, it takes so much more energy to begrudge them than to just let it go.

Because of him I've learned to stop and take things in more. I notice the sweet smell of his skin. How soft his cheeks are. How infectious Ethan's full belly laugh is. How sweet Miranda's dimples are. How Kristyna smiles with her whole face.

I've learned what matters. Time matters. Now, instead of brushing the kids off I try to stop what I am doing and focus on them. We play more. We laugh more. We snuggle more.

I've learned that love and support comes from the most unexpected places. In a world with so many problems there is still so much goodness. We live in a wonderful community and the kindness of strangers is incredible. I've learned that it's okay to accept help when it's offered. It's okay to reach out and ask for help.

I've learned to find joy in the small victories. The daily accomplishments. The quiet moments. There is something so incredibly amazing about watching a child learn something new, discover how things work. It's a gift to watch them blossom into themselves.

I have learned to trust Tim. He might take a little more time than I do but he always gets there. He can do everything for Brady that I can do. So much of caring for Brady is way beyond his comfort zone but he has learned to do it any way and you know what? He has learned to do it well. I've realized that for so long I have underestimated him. Given the chance, he really has become a better parent. I think I was holding him back in a way but Brady has given us the opportunity to grow as a couple. We still struggle sometimes but I know I can trust him when it really matters. When push comes to shove, we are in it together.

I have learned to let go. Anyone who knows me knows I struggle here. I tend to want to do everything myself because I need to know its done right. But I can't do everything. I cannot be in two places at once. I cannot take care of everything all the time. I have to let others step in and trust that it will be okay. It might not be the way it would have been if I were doing it but just because it is different doesn't mean it is wrong.

I have learned to have faith. It's still an ongoing challenge but I am learning to trust God. There have been so many times since Brady was born that I have felt so lost. So desperate. When I was sure we could not get through it. Somehow we have gotten through all of it. There have been a few times when we have been down to our last dollar and then money comes in from somewhere or someone unexpected and we squeeze through. When I feel like I'm starting to break something simple renews my strength. A card from someone we have never met. A comforting word from someone unexpected. Something simple to smile about. And what I've realized is that those perfectly timed little blessings? That is God at work. He is trying to show me that He is with me, with Brady, with our family. We are not alone in this fight and I need to learn to trust Him to lead us through this. I now understand what people mean when they say "Give it to God". My faith still falters but I am finding it more and more.

Because of Brady I have learned how to really live and I am a better person because he is in my life.

Blogger Fail

I know, I know. Worst blogger ever. I'm sorry :(

Just a reminder: if you're not seeing blog posts you can always check out Brady's facebook page -- Sweet Brady -- for up-to-date info.

Now, a long overdue update...
B is back in the hospital. Thursday 2/23 he started running low grade fevers off and on. He would feel slightly warm, I'd check his temp and it would be hovering around 100 and then when I'd recheck an hour later he would be fine so we decided to just keep an eye on it. Then Saturday night I noticed he felt pretty warm. I unwrapped him and changed him into cooler jammies and his temp normalized. But by Sunday morning we knew he wasn't feeling well. His fever was ranging between 100.0 and 101.5 and he was starting to show dips in sats, hanging out around 92%. He was also having more frequent and borderline diarrhea poops (TMI, sorry!). We called the pediatrician and they said for us to take him to the pediatric urgent care in Williamsville. We got there around 11:30am and knew right away things were not good. When we arrived there his temp was 103 and his sats were worsening. They drew labs and said he was dehydrated and his liver numbers were elevated. They felt he was too unstable for us to take him to the ER and called the WCHOB Stat Team to transport him by ambulance. They kind of down played things and were really calm about the whole thing so to be honest we didn't really think things were too bad...until we got into the ambulance and they said we were going "hot", meaning with lights and sirens! Um, okay. Never a good sign. When we arrived in the ER they explained that Brady's sodium was very elevated and that that put him at high risk of having a seizure. He was admitted to the PICU :(

He spent eleven days in the ICU and was transferred to the 4th floor yesterday evening. Turns out he caught rotavirus and because he has no immune system he could not fight it off. They ended up putting IGG (antibodies) into his gut through his GT. The IGG fought off the infection that his body couldn't and he stabilized pretty quickly at that point.

Between the crazy leaking from the tube and the rotavirus he's lost a lot of weight again. He dropped down to just 7 pounds. He has started gaining a little again and is up to 8lb 1oz. They've switched his G-tube to a GJ and he is currently getting all his food through the J port, which feeds directly into his jejunum...



The hope is that this will give his stoma (hole in his tummy where the tube goes in) a rest and allow it to heal so that it won't leak any more. They've also dialed down the caloric concentration of the formula (which may have contributed to his diarrhea) and changed it to Pregestimil which is specially formulated with a different type of fat, called MCT oil, to be gentler on his liver. We're starting out slowly. The rate is being increased by just a few ml's per day. The hope is that by using the J he will be able to eventually tolerate a higher volume and get the calories he needs without having to concentrate his formula so much. Fingers crossed!!

For anyone asking about Team Brady bracelets, we apologize but they are currently sold out -- wow! More are on the way. Watch for facebook updates for when the new order arrives. Chinese auction baskets are being collected and I believe they're hoping to have the majority of them collected by March 31st so if you have a donation call any of the committee members to arrange a pick up time. Tickets are selling fast too so please don't forget to get yours! We have been completely overwhelmed by the incredible response to this benefit. We are truly blessed with an amazing community, family, and group of friends. Thank you times a million!

Love & Hugs,
Shari