Fri-Yay!!

 It has been such a good couple of days for Brody. Since getting the breathing tube our we have been able to get more aggressive with everything and really make some progress. Yesterday they were able to take out his pacemaker wires and chest tubes. His chest tubes were still draining quite a bit but the surgeon wanted them out to help with his rehabilitation and thinks him being up more will be more beneficial. He has not been a huge fan of his BiPap/CPAP mask, but who would. The mask here covers his nose and his mouth and straps across his head. The positioning is problematic because it is so heavy and often pushes down his nose and the straps push down towards his eyes. It is a constant struggle, especially with him trying to be awake more to keep it in a good position. It was definitely adding to his irritability which is why it is nice to say we have ditched the CPAP mask and have been able to transition to a high flow nasal cannula. They started out wanting to switch to high flow intermittently, but his stats have looked so good on it, that he has been able to keep it. Yay!!! In addition to the oxygen switch, they were able to remove an arterial line and are working on starting his formula again. It's so nice watching them remove machines from his room because they don't need them anymore. I am not quite sure from here what major plans they have for him this weekend, but I think it will include increasing his formula tolerance and making sure he is sitting in his chair as much as possible. I would love for him to lose the nasal cannula this weekend, but we will see. I think regardless of the plan, it is going to be an active weekend. He is acting much more like himself with lots of movement in the bed and just wanting someone sitting next to him. Absolutely buddy, anything you want!  It's crazy to think how much can change in just one short week. 

Baby Steps

 It's been 4 days since putting the breathing tube back in and it was a slow and steady weekend. They didn't do a whole lot, but rather kept him nice and comfortable as they worked to break up the junk in his lungs. I was able to go home for the night on Saturday to spend time with the middle and little, who really are proving to be the real troopers in all this. The plan has been to extubate this morning and we were able to stick to that plan. They started coming off of his sedation meds to make sure he would be awake enough to do his own breathing (with the assistance of the BiPAP machine). Once the meds officially wore off and he was awake, he was awake and he was pissed. It took two nurses and myself to hold him steady until the doctor could get there and officially move forward with extubation. The entire process took a good 45 minutes and it was extremely stressful, much like the last time. I try really, really hard to hold it together, but these type of days really test me. Everything all comes out at once. I know he is scared, I know he is in pain, I know he is confused and in the middle of all that, I know he is just trying to breathe. They eventually were able to give him some extra Morphine to settle him down and to calm his breathing. He is resting comfortably right now, but they are keeping a very close eye on him and trying to be very aggressive in clearing his lungs and doing everything possible to not have to put the breathing tube back in. In addition to the breathing, they are also monitoring his chest tube output. Right now he has two chest tubes surgically placed that are draining excess fluid stemming from the surgery. The hope would be that they would have stopped draining by now, but his continue to drain. This was also a problem we dealt with extensively after his first surgery as well. The hope is that the meds he is on to assist will clearing the lungs will also work to dry him up and reduce the drainage from the chest tubes. They plan to do an echo and an ultrasound today just to make sure they aren't missing anything. It would be really nice if we could make some good progress and have Brody in a better place by the weekend to allow the other two to at least FaceTime him. We don't want them seeing their brother the way he is right now and worry them even more, but I also think not seeing him at all, also worries them. Hopefully we are on the right path forward, but I think the next 12-24 hours are going to be huge for his progress. 

And So It Begins

 Night 1 Post Op went better than I anticipated. This was the first time I have been able to stay with him the night after heart surgery. The other two times he was a baby in the baby pod of the old CVICU where you were lucky if you had a chair bedside some days. The new CVICU has individual rooms for each patient with a parent bed. The evening was spent getting him all settled. The plan for the night was to monitor his vitals and if things looked good we would work on waking him up a bit more and take the breathing tube out around midnight. They came in around 11 and said they were good and were ready to take the tube out. It seemed like all at once we had about 5 nurses, 2 doctors and 2 respiratory therapists in the room swarming around. It was an intense 30 minutes of taking the tube out and figuring out the best option for oxygen support. We tried high flow nasal cannula and then opted to switch to CPAP. Once things were settled, Brody would sleep, but any time he would start to wake, he would get super agitated and his oxygen levels would drop. He was on a continuous dose of morphine, but if he seemed in pain or unsettled the nurse could give an extra dose every 10 minutes. I think he ended up needing about 4 extra doses over night. It stayed relatively quiet and I got more rest than I expected, but woke up every couple of hours when he would start stirring and whimpering, but was able to go back to sleep when he would get his extra morphine. 

This morning has played out much differently. Brody has been super irritated and his oxygen numbers have been hanging out in the 80's. They came in and switched him to BiPAP, but that wasn't helpful. The question has been is it the BiPAP, pain or irritability that is causing him to be so restless. I think it's a combination of the three. Overnight Brody had gotten the 4 extra doses of morphine. From the time the day nurse came on until about 9 am, she had already had to give him 8 extra doses or morphine with no real success. 

One of the ICU doctor's was talking to me and that he was hoping to try some things and keep the breathing tube from having to go back in, but that it could be a possibility. Within about 5 minutes, there was about 15 different doctors and nurses swarming around and they made the decision that they would put him back on the breathing tube. I wasn't really surprised as his oxygen is always an issue after procedures and I am used to proceeding very cautiously with "the plan," because nothing ever goes as planned. 

I had to step out of the room why they got him re-intubated and waited for them to finish. It is so incredibly hard to watch so many people flock to his room and rush around. I am good at staying calm in the moment, but dang. After the tube was in they told me that he had some very thick secretions and he never would have been able to get them up on his own, so putting the tube back in was definitely the right move. Currently, even with the tube in, we are having issues keeping his oxygen up. They are giving him a couple of different treatments through the ventilator, but they are not getting much up. The plan, for now, is to keep working through these treatments and see if we can get his oxygen more stable. Once they can get better oxygen numbers, they will do a Bronchial scope on him and go in with a camera to deliver these treatments directly into the lungs to assist with breaking up whatever is in there. 

It is proving to be an intense day of hurry up and wait. I will say though, I absolutely love his team. It really helps to make the difficult things a little bit easier. 

Surgery Day

 We made it to surgery day!

The day before surgery went super smooth (mostly). I got a call from the kid's school that Colby had thrown up and needed to be picked up. Slightly panicked because if he had some sort of bug, that was the last thing Brody needed. I told Colby he was going to need to stay away from his brother and hang out in his room. Once he got home he said he was hungry and made himself two flap sticks and then stood at the counter eating Oreos. His appetite and behavior the rest of the evening reassured me that he did not have a bug, but we still kept our distance. At one point, I went and checked on him and he was putting on his inflatable halloween costume from a couple of years ago. I smiled at my "sick" kid and when he saw me he told me he had a great idea. He said he was putting the costume on, so he could give Brody a hug before he went for surgery. That kid makes my Mamma heart smile so much. When it was time to go to bed, I told Colby to come sanitize his hands and put a mask on and let him hug his brother before bed. Of course, Zoey needed a mask too so she could do the same. Everyone went to bed with no tears or meltdowns. I think the kids got out all of their built up emotions before the last attempted surgery which really helped it go better this go around. Since Colby threw up at school, he had to stay home the next day, so he got to spend the day with his Auntie. All of it was probably for the best because he just got to just relax with her, was treated with some Olive Garden for lunch and got to play with his cousin that afternoon. 

We had to be at the hospital at 6:30 am and Brody woke up in a great mood. He was "talking" and clapping and helped put our nerves at ease. Once we got to the pre-op room, his demeanor changed a little and he became a little more reserved when we put him in the bed. We signed the rest of our consents and everything moved pretty quick. They gave Brody a medicine to help him relax, but I think it made him feel pretty out of it and disoriented. I was sitting on the side of the bed next to him and once they gave him the medicine, he was trying to crawl in my lap. We gave it about 5 minutes, gave hugs and kisses and then made our way to the waiting room. It was a long day, but we received updates every two hours which helped. 

• Update 1: They just rolled him on back. They gave him some meds to relax him and he was trying to climb into my arms for snuggles. He did great. They said our first real update won’t be until closer to 10.

• Update 2: They have all his lines placed and breathing tube in. Surgeon is working his way to the heart.

• Update 3: They have officially made it to the heart and have transitioned him to Bypass. Time for the surgeon to do his thing!

• Update 4: Surgery is progressing as planned. Surgeon is currently working on replacing the donor valve.

• Update 5: Operation is done and he is off bypass! They are going to start working on closing him up and the next update should be from the surgeon.

• Update 6: Just talked to the surgeon and he said everything went great and as planned. He replaced the donor valve, repaired the tricuspid valve and put a patch on the aorta to expand it. They are getting him settled now and said if things continue to go well they might start trying to wake him up tonight and take the breathing tube out. Should be able to get to him in the next 30-45 min.

• Update 7: Finally made it back to our boy!!! (7 has always been our family’s special number. I love that update 7 is when we are reunited).

Overall the day went smooth and the surgeon was very happy with the results and what he was able to do. Now, will be the real fun as we take a ride on the roller coaster called recovery.

Huge shout out to everyone who sent text messages and reached out through social media. All of the support for our family is always appreciated and means more than we could ever express. Extra big shout out to Auntie, Grandma and PawPaw for all the help with the middle and little. This our first go at heart surgery and an extended hospital stay while having two other kids at home and there is a lot of things to coordinate!

Feeling Good!

Something Seems Up

Post Surgery. I've never taken pictures of him after surgery because those images are always burned in my brain, and not something I really want a picture of. 

Same Time, Same Place, New Date

 It was a good plan. It was executed flawlessly. The only problem is, it ended up being a dress rehearsal for the real thing. Never in a million years did I think we would have the surgery cancelled. On Thursday, Trey took Brody to his Pre-Op appointment, did imagining, lab work and bloodwork, twice because they weren't able to get enough the first time. I thought if we made it through all of that we were in the clear and good to go. Thursday night, the night before surgery, was awful. I am not sure how I expected that night to go, but clearly was not prepared. Thursday is the one night out of the week we have nothing on the calendar, no practices or other obligations. Kids were playing outside with friends. When it was time to put Brody to bed, I called the kids home so they could say good night and give him hugs since they would likely be asleep still when we left in the morning. Brody went to bed happy and fell right to sleep. We sent the middle and the little (my new nicknames for them) to get their bath and shower done and that's when all the emotions set in. Colby has been struggling with the anticipation of this surgery for a while. He cried while he took a shower, when he got out of the shower, and when he went to bed. It's been a lot on him. He worries about his big brother a lot and does not want him to have surgery. We have talked about it with him and answered all the questions we could the best we could. In that moment of trying to comfort him before bed I was left feeling the most helpless I have felt as a mom in a long time. I had no other words or ways to calm his fears and settle his worries. I have tried everything I could think of, but I sincerely believe he just has to feel all the feels. There aren't ways to avoid it, you just have to get through it. Zoey doesn't quite know what she is supposed to feel. She said her goodnights to Brody and was good. When she saw Colby upset, that is when something triggered inside her and she began to be upset. Both kids wanted a stuffie of Brody's to sleep with, so I was able to get them a stuffed Mickey Mouse to snuggle while he is away. Brody's very first friend in Kindergarten has started a bracelet making gig and I asked her to make us all matching Mickey Mouse themed bracelets for while Brody was in the hospital. We would all have one and would think of each other every time we looked at them. I went ahead and put the kids' bracelets on, so they would have then ready for the morning. They both drifted off to sleep. I was able to finish all my packing and get everything ready for the morning. I went to bed completely exhausted and surprisingly, slept pretty well. I woke up about 4 to Brody's CPAP machine beeping and went in there to handle that. At that point, I was awake. I laid in bed and snuggled the kids a bit more, since they were both in there, before I went ahead and got up to shower. I took my time getting ready. Zoey woke up during this time (which is odd because I am always dragging her out of bed for school.) My parents showed up to the house to be there to get the kids up and off to school before coming to sit with us at the hospital. Just as Trey went outside to start loading the car to go, the phone rang and I saw it was TCH. My heart sank and I walked to the front door. The nurse on the phone said they were trying to catch us before we left because the surgeon had text them first thing this morning that he didn't get home from his surgery the night before until well after midnight and that he needed rest and wouldn't be able to do our surgery that day. Trey walked back in as I was on the phone and I know he saw it on my face. When I hung up the phone I lost it. I am really not a crier, but I burst into tears and cried one of those good hard cries that leaves your chest hurting. I explained the phone call to him and he just held me. Zoey came over curious as to what was going on and concerned because she has never really seen her Mom cry. I eventually pulled it together, but it was one of those things where every time I let my mind think about it, the tears started flowing. We dropped the kids at school and Trey, Brody and I went to breakfast. We came back home and I got on the computer and just started doing work stuff to keep my mind occupied. We were getting all sorts of messages of support for surgery day at which time I had to tell each person that it was cancelled. I think it actually kind of helped a little to just accept it and move on. Everytime I had to type the words it was with more and more lightheartedness and just an "oh, well what can you do." We waited for the phone call for when it would be rescheduled for and we finally started calling them in the early afternoon. I did not want to be left hanging all weekend. The scheduler said she was working on moving other things around and the earliest we would be able to get in would be Sept 5. So, two weeks from now, we will get to do it all again. 

Because our weekend suddenly freed up, we were able to take some time and enjoy all the things. The middle and the little both had games this weekend. It was the one weekend where it appeared their games would overlap and both would have team pictures. No surgery meant a little less chaos and shuffling around. I was able to catch Colby's football game that ended in a shutout victory. I missed Zoey's soccer game, but heard she had a good game and they also had a victory. Zoey lost her other front tooth, so the tooth fairy got to visit. Colby's friend had his birthday party that I got to take the kids too and just sit back and relax. And now I get to sit in the quiet air condition with Brody while Trey plays in his last weekend of Softball games and the middle and the little run around and keep the concession stand in business. 

We appreciate so much all the texts and messages people sent before and after the change of plans. I have always bragged about what a huge village we have and all of our villagers. From text messages, to meal trains, to gift cards we have so much support. I am left in awe every time I think about it. It really does take so much stress off of the situation and allows us to solely focus on Brody and his recovery. I know I have a massive list of people I can lean on for support and can jump in at any time to help with the middle and the little. 

So friends, same time, same place, new date, Sept 05th.

 

 

PIVOT!

 So, we got another phone call and surgery has been rescheduled...again (I think this is the 4th time now). The hospital called on Wednesday and let us know that they had an opening and are able to move surgery UP to August 23rd. Immediately, my brain went into overdrive trying to think of everything we have scheduled and coming up. The biggest thing is everyone starting school on the 19th and all the Fall sports starting back right now. When I was talking it through with a friend I was in mild panic mode trying to think of everything that I had to get organized and planned out. She reminded me that I am the Queen of pivoting and adapting and it will all be fine. I think there could be some truth to that. The big picture though is August 23rd makes everything a whole lot easier. The next two weeks are going to fly by with how busy things already are, so I know we will need to remind ourselves to slow down and relax. Please just pray that everyone stays healthy the next two weeks and no more surprise scheduling mishaps. 

If you know me even a little, you know I am a huge Friends fan, so being called the Queen of Pivoting makes me smile a little extra. This scene from the show is funny on it's own, but the bloopers are even better. 

Just Kidding

 We got a call yesterday from our surgical coordinator that we weren’t expecting. Our surgeon had a family emergency and would be leaving town which meant our surgery was going to be postponed. The first available date for the rescheduled surgery would be September 6th! She let us know that if there were any surgeries cancelled or postponed that we could potentially come in sooner, but as of right now, it’s looking like September 6th will be the day. Sigh. 

I am frustrated and disappointed. I am a planner and organizer and have been working and stressing hard to make sure everything was ready and in place for surgery. I think I use it as a coping mechanism to keep my mind off the surgery itself and have something to focus my energy on. With surgery being a few days away, all the plans were starting to be put in motion. When we got the call, Trey was literally driving home from Brody’s pre-op dental appointment (he had to be cavity free to proceed with surgery, which he was). I have been mentally preparing myself and hyping myself up to be ready for Friday. I was giving myself pep talks in my head and pep talks to those I would talk to. I was at peace with the surgery coming up and was ready. I was just ready to get the surgery behind us, start the recovery process and get back home. With surgery now postponed every plan I had made is now up in the air. 

I started processing the pros of surgery being postponed (I mean, what else could I really do) and immediately started thinking and adjusting plans. With surgery postponed it gives us more summertime fun with friends and family. June was crazy busy with baseball, but now that July has opened up, we can relax a little and enjoy what’s left of summer. I go back to work in a couple of weeks which I think will make things go by super fast because of how busy it gets. The kids will be in school when we have surgery and during recovery which might make things easier on them with having a routine and the distractions. I am not sure what all this does for Brody and school. He is starting middle school and so there was already a lot of change taking place and now he will be out of school a good chunk of time. I was originally nervous that he might not start the school year depending on how surgery went, but now he can. I want to talk to the doctors about that though because I’m a little nervous about starting school and all the exposure to sickness. It never fails that when we go back to school Brody struggles with a runny nose, cough, congestion and such. I don’t want to risk getting sick and having to postpone again. 

Lots to think about, but now I have an additional 2 months to sort it all out! We have had so many people reach out and offer support for our family. We appreciate the trial run of well wishes, prayer and support and will definitely be holding onto it. For now, we are just going to breathe and have some fun. 

It is Time

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 :)