The time has come to dust off the OG Bish Family Blog (and my-oh-my how the Bish Family has changed). I originally started the blog at the very beginning of our parenting journey when I was pregnant with Brody. Occasionally a memory will pop up on Facebook from those early days and I will stop and go read the blog and remind myself of our story and just how far we have come and how much we have learned. Over the years, as I have met people who have struggled with infertility, had a high risk pregnancy, had a child with complex medical issues, etc., I have shared my blog with them, so they could hear the story of someone who has been there, done that. I would always send it with a cautionary statement that this was our unique journey and that it didn't mean their story would be the same. That first year (well almost 2 years if you count the pregnancy) was a whirlwind of crazy that when I go back and read, I am shocked and proud of all that we have conquered. Since the last post, in September of 2014, we blessed ourselves with two more kids, Colby (who will be 9 next week) and Zoey (who will be 6 in about a month). Throw in the dog, Chewie, that I said I would never own that has completely attached himself to me and made me his mom, it is safe to say our house is never quiet or clean. Also since that last post, we have learned so many things about Brody. Sometime after that last post, at the suggestion of his immunology doctor, we completed a very in-depth genetic testing to try and determine why his immune system seemed to be struggling to catch up. Was it the trauma his body went through during that first year with the two heart surgeries that caused his immune system to be delayed, or could it be the result of a genetic disorder? With those results, we found out Brody had an extremely rare genetic disorder called Mowat-Wilson. His genetic disorder explained everything that we had been dealing with, with the exception of the immune system. At the time he was diagnosed, he was one of a handful of people in the United States that had been diagnosed with Mowat-Wilson. Over the last decade, we have seen the statistics go up as more genetic testing, research and literature have become available. Brody seems to be on the more severe side of the Mowat-Wilson spectrum. Believe it or not, medically, he is not as complex as some of the other MWS kiddos, but developmentally he is definitely on the more severe side. For those that do not know Brody, he is about to be 11, but developmentally is probably 9-12 months. He relies on assistance for all daily tasks (mobility, diapering, feeding, etc.) He is completely non-verbal, but we recently acquired an eye-gaze device and have been working on getting him to use it to assist with communication. We know Brody will require full time care for his entire life, but are hopeful some things will be learned with time.
With all that being said, the main reason we are bringing back the blog is Brody will be having his 3rd heart surgery next Friday, July 5th! Over the last year or so, we knew we were inching closer to his next surgical intervention. Brody's cardiologist has followed him since the womb and we have a very good relationship with her. She knows I work in education and all I have ever wished for is if we could please do the surgery during the summer. We planned to have a Cardiology appointment in March, so she could have all the most up-to-date data and imaging to be able to move forward with presenting his case to the surgical team that would then hopefully give us first dibs on summer scheduling. Everything was going according to plan, but we did not take into account that Brody's surgeon, also the one that did his first two surgeries over a decade ago, would maybe want to take a summer vacation in early June. So here we are with our surgery date of July 5th!
On Tuesday, we met with the surgeon and discussed his plan. There will be 3 different things they will address in this surgery.
1. Conduit Valve: During his second surgery they replaced his Aortic Valve with a donor valve. Since it is a donor valve, it doesn't grow with him and he has outgrown the valve. We know that valve came from a 5 year old, so when it was placed when he was 6 months old, we knew it should last us a while. Couple that with the fact that Brody isn't a fast grower, it has served us well.
2. Tricuspid Valve: This valve has been leaky and irregular since the womb. During the first two surgeries, there were other more critical concerns that needed to be addressed and the Tricuspid Valve was moderately leaky. Over time, we have monitored this valve and it is now on the severe side. Between the leakiness of the Tricuspid Valve and the leakiness of the donor valve, Brody's heart has been working pretty hard. He has been on blood pressure medication for a while to slow down how hard the heart works and since Brody isn't super active, this has kept him manageable.
3. Aortic Patch: This repair suggestion was new to us. During the first surgery, they placed a patch on his Aorta to open it up because it was very narrow. Well the patch doesn't grow with him and so this will be addressed as well. The surgeon will decide if he will replace it with a new patch, tubing or something else.
What we do know about this surgery is that it will be a long day, which is to be expected. It will likely take hours just to get to the heart because they have to be very careful navigating through all the scar tissue and the chest cavity. The surgeon has a plan for what he wants to address, but some of the "how" will take place in surgery once they place him on Bypass and get a good look at the heart. The surgeon mentioned he anticipates being able to close the chest in the OR and that he will come out on the breathing tube, which is to be expected. He mentioned he wants to get aggressive with getting him off the breathing tube and getting him sitting up in bed to help aid his recovery. Since our last surgery, TCH has expanded their Cardiology Unit and program. All of the CVICU rooms are private and come with a pull out bed for parents. This is drastically different from last time. During his first two surgeries, we were not able to stay the night with him while he was in CVICU and we had to get their super early just to try and get a comfortable chair for the day. Knowing that we can stay with him at all times and have our own private space, is super comforting and will do a lot for us physically and mentally.
What we do not know about surgery... is everything else, haha. We don't have an idea on what or how long recovery will be. What I learned from last time is we are on "Brody Time," and he will run the show. There are hiccups that can happen and things that can and will pop up that will need to be addressed. Though our recovery last time was less than pleasant, I feel like we know so much more about Brody now that will aid in the process. Last time, Brody was a baby and his body was tiny and still developing. There was a lot of time and emphasis spent on getting him back on track developmentally. We worked tirelessly at trying to get him to eat by mouth and I felt like this kept us inpatient for much longer than we may have needed to be. We know so much more about Brody's norm and Brody's capabilities and the team will have a much clearer picture of what to plan for his recovery.
So here we are. This next journey will start in about a week and we are starting to do all the prepping to move forward. I have gone into full on nesting mode wanting to get everything done around the house that I have been wanting to do for months now. When we did this the last time, I remember saying " I am glad he is our first and we aren't trying to do this with other kids at home." Colby and Zoey are in good spirits and we have been trying to answer all of their questions the best we can. Being older, and more emotional, Colby is struggling a bit more. Every time we have talked about July, Colby is quick to mention "but that means surgery." He has always asked questions about Brody and wants to help care for him as much as an 8 year old can. He has known Brody would have another heart surgery and we promised him that we would be as honest as we can with him. The biggest mistake I ever made, well maybe not ever, but a couple of years ago Brody was admitted to the hospital for a few days and we told the kids he was at the doctor as not to scare them with the word hospital. Well after that, any time we said Brody was going to the doctor the kids would be worried that he wasn't going to come home and we would be staying at the doctors. I quickly decided that honesty was better and less scary overall. Zoey is aware of what's going on, but I think prefers to not talk about it. We were talking about it yesterday a little and she said "how did we even start talking about this?" I think she prefers to not think about it. The biggest struggle for her is going to be when one, or both of us, aren't at home. Lucky for them, we have an amazing tribe of family, friends and supporters that we know will be there for all of us during this time.
The only thing we are asking for at this time is for prayers and good vibes. Our current prayer requests:
1. Brody: Strength, Healing
2. Surgeons/Doctors: Wisdom, Skills
3. Colby and Zoey: Comfort
4. The Tribe: Thanks
5. Trey and Amber: the Power to manage it all :)
