Team Brady

My apologies for not updating sooner -- things get busy around here as I'm sure you can imagine!

Bug is doing pretty well. He went to WCHOB on Tuesday for his 4th rituximab treatment and, as always, handled it like the tough guy he is! His labs looked stable still and his hemoglobin was 9.4 -- woot woot!! If all goes well and stays stable he won't have to go back until March 12th for his monthly IVIG.

Wednesday he had his Early Intervention evaluation. He qualified for both PT and OT services and will also get help with feeding. He is currently at the developmental level of a two month old but is showing some scattered 3 month old skills. Hopefully he won't get any further behind now that he'll be getting therapies weekly.

Next week he has appointments with his surgeon, his GI, and his nutritionist. He's continuing to lose weight despite being on a crazy high calorie formula blend and his G tube is still leaking. Hoping they can put their heads together and come up with a solution to get some weight on my tiny little guy!

TEAM BRADY bracelets have arrived -- If you're interested in purchasing one you can make a $3 donation to Brady's paypal account (TeamBradyGetty@gmail.com) and then send an email (same email address) with your name, email address you used to make the donation, & address. Your bracelets will be shipped to you ASAP! If you live in the Buffalo NY area then message Sweet Brady on facebook to arrange a local purchase :)

Break up and make up

Well, we're being discharged Wednesday and BCH is breaking up with us, so to speak. Lol

Since we broke up with WCHOB before transferring and now we'll be getting Bug's care there again I guess it's time for us to make up. But it's hard. Our trust was definitely broken and it will be a long road to rebuild it. They say time heals all wounds and I hope that will prove true but for now we are definitely feeling anxious about placing our Sweet Brady back into their care. We've loved the whole team centered approach they've taken here at BCH and that team spirit was something that was sorely lacking back at home. We're hoping things will be different now. We hope we've made it clear what our issues were with the care Brady received and that our concerns will be addressed. Only time will tell I guess.

Apparently this blog has been read by B's Buffalo care team and they weren't super thrilled with what they've read. I'm not happy that anyone may have been upset or hurt by what was posted here, that was not the intent, but I will not apologize for speaking my mind either. Nothing was said here that wasn't or wouldn't be repeated directly to any of his doctors. We made it clear, or so we thought, that we were not happy with the course of treatment. We asked for a transfer. We made it known we wanted a second opinion and why. To the opposite end, I've also shared here when I felt like someone did something positive. I've raved here, and to anyone who will listen basically, about the stellar level of nursing care we received every step of the way. But that doesn't change that mistakes were made. Things were missed. As a result our peanut suffered. The past cannot be erased. But we will move forward making every effort to work cooperatively with his doctors back home in Buffalo. All that matters to us is that Brady gets the care he needs!

Down the rabbit hole

It seems like I've been struggling these last months to catch up to all that is happening in my life. I get to where I think I'm within reach of getting a handle on things and then something else jerks it away and I'm struggling again. The other day they were playing Alice in Wonderland at the hospital and all I could think is that I fell down the rabbit hole. This new world is the same as my old world and yet it's so different. Nothing is as it appears. Most days my baby is yellow. Feedings involve tubes & pumps not bottles. Beeping is so common I don't even notice. Burping my baby involves a syringe not a cloth. Asking "Did you flush?" has absolutely nothing to do with a toilet. There is a constant loud hum in the background. This world is filled with poles, and pumps, and tubes, and cords, and syringes, and medicines, and tanks. My cell phone recognizes more medical jargon than a second year med student and I spout it out like a second language. This is my world. This is Tim's world. This is Kristyna, and Miranda, and Ethan's world.

And this is Brady's world. My beautiful beautiful boy. Who looks absolutely perfect. Who is so very sick. His body is betraying him. It is slowly destroying itself. And it is slowly breaking my heart. But I have to be strong. Strong like my boy. He fights so hard so I will fight with him. He will never ever carry this burden alone. Mommy will be by his side always. We've gone down the rabbit hole together and no matter how crazy things get down here in Wonderland I will hold tight to my precious Brady. I will never give up hope that one day we will find our way and come through the looking glass and the world will be the way it should be once again. I just have to hold on...

Biopsy Results

Hello. This post is brought to you by Liane (Shari's sister/Brady's aunt).

After Brady’s liver biopsy on Friday, February 1st, he was diagnosed with Giant Cell Hepatitis (GCH). When you combine GCH with Brady’s AIHA, the prognoses is poor. There will be a family meeting on Friday with Brady’s medical team and social worker, where Shari and Tim will learn more about this rare disorder and what the future holds. However, after doing some research of our own, the outcomes do not seem favorable. Here is a link to a case study that will explain this rare disorder better than I can:

Giant Cell Hepatitis with Autoimmune Hemolytic Anemia

It is important to remember that every case is different and there is no way of knowing how Brady’s body will respond to treatment. At this point Brady’s liver is stable, but things could change rapidly. You may not see a blog update for a while, as this is a very emotional time for Shari and Tim. They just need some time with their family to process this unsettling news. Please keep Brady in your prayers and never lose hope that our little fighter will get through this!

The wait is on

Bug's biopsy went really well yesterday. They used moderate sedation so that he wouldn't need to be intubated. He was in the OR about two hours and after a quick half hour in recovery we were back in his room. His pain didn't seem too bad. He had two doses of morphine and thanks to the anesthetic in his system he spent most of the day napping. He did awesome overnight too and I was able to get the most sleep I've gotten since we arrived in Boston! This morning he was pretty fussy and couldn't get comfortable so I asked about possible pain and they gave him another dose of morphine. He's resting comfortably again.

I'm so relieved the biopsy is behind him. Now its waiting time. They're hoping to have some preliminary results back on Monday but the full pathology work up will take 5-7 days. So much is riding on those results that I swear I'm going crazy waiting :(

B's hemoglobin is stable today at 7.8 so that's good. That means he didn't have any bleeding from the biopsy. Since he was transfused Thursday that means today is day 2 with no transfusion. Hoping he starts to stretch longer in between at least. I really don't want to have to put him through another major surgery but if he doesn't stabilize then the splenectomy is really the best option. He'll get his second dose of Rituxan Monday so that will hopefully help!

B's benefit really seems to be coming together. I am absolutely humbled by the overwhelming response so far. I think it's safe to say that Bug's event has gone mini viral with over 5,000 invites going out in less than a day! Amazing. A huge thank you to all of you who have generously offered to make donations, seek donations, volunteered your time, are preparing baskets, or just spreading the word. It all means so very much to our family. Truly. TEAM BRADY committee -- you're doing such an awesome job and we're so grateful you're working so hard for Brady! A special thank you to ComDoc & Travis Weiss for doing all the tickets, flyers, stickers, etc absolutely free of charge. Everything looks great!!

Guess that's it for now. I'll update again as soon as we have some results from the biopsy.

Shari ♥