“Normal”

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It’s been more than three months since Bronson had his FIFTH open heart surgery to replace the Melody Valve with a tissue valve. October 2nd, 2015 is the exact day actually. He was discharged from the hospital just FIVE days later! I have learned that after every surgery, since the first one he had when he was three weeks old, that his body adapts and adjusts differently to each new palliation. Every surgery is a palliation, it helps to “ease (symptoms) without curing the underlying disease” and/or offers an outcome that will improve the quality of life. The most misunderstood concept of surgically repairing a Complex Congenital Heart Defect is that even with noted improvements after each repair, the heart is simply that, REPAIRED. It is NOT “fixed” and certainly NEVER cured. There is never a guarantee that any surgery will be the last. However, the chances for more repairs would’ve been less had we opted for the standard set of three surgeries to construct the right side of his heart to sustain his whole body.  And as most of you who’ve been following our journey from the beginning know, we instead, chose a path for pioneering in the name of science and innovation with the hopes that it would offer him a more “normal” quality of life. Only one hospital in the world was offering the OPTION to convert a half of a heart (that can sustain a good quality of life) to a whole heart. They’d only been doing it for about ten years. It was a choice we made after dedicated prayer, validation from “wise counsel”, and of course unwavering faith in the Lord’s plan. Although we knew it wouldn’t be easy, we had hoped it wouldn’t be as tumultuous as it was.

Our experience with innovation has been an extreme coaster with twists and turns that defied the stats. It jerked us from hopeless to hopeful and back and forth with only a few smooth rides. We left Boston on the path to Transplant that lead us to road trips to Stanford, in California, where we expected him to receive his new heart.  After his first Heart Catheter with the Heart Failure team at Stanford, we were directed back to Boston to assess his leaky valve.  That Heart Catheter there revealed that his left ventricle had done what they’ve never seen before or knew was possible. It had gone from being too stiff to relax to completely rehabiliatated.  Transplant was negated and the new plan was made to replace the Melody valve with a new tissue valve. In the interim before that replacement our “normal” felt more forlorn than hopeful. The spunky little boy that we handed over for his half of heart to be made whole, who loved to climb and even had enough reserve to be in the 75th% for weight (without a feeding tube), barely survived a four month post op recovery in the hospital. We brought him home almost in the 5th%, frail with protruding ribs, and with a feeding tube to sustain seven of the eight pounds he’d gained back before discharge. His energy level significantly decreased. His reserves were depleted which meant his resilience was limited, and that resulted in a miserably moody toddler. Vomiting became his standard to the point that we had “puke bowls” strategically placed throughout the house and one in the car readily accessible. Our once lower maintenance child with Complex CHD now required continuous oxygen at night to relax his heart enough to relieve the high pressure in his lungs so transplant would be less risky. Any congestion from an allergy or a virus would tank his oxygen levels leaving him completely dependent on full time oxygen for the duration of the congestion. THANK GOODNESS we have tanks at home or the hospital here in Phx would’ve became a second home. Through all of the despair and agonizing over this new baseline, we still somehow found joy in the one pound and little less than the inch he gained during that time. Sometimes he would even have short stents, of almost a week, without puking and those were the times we found reason to celebrate. Those were the moments that nourished hope. Hope that his heart would recover and that our normal “normal” would be restored.

We FINALLY feel like we have rose from the ashes of the Biventricular Repair that we were buried in this past year. When we were in the deep of it, we felt like we were enduring a life lesson about total dependence on the Lord’s will. Yet we still held tight to the truth that somewhere in the mess we’d have clarity that our choice to pursue a whole heart for Bronson was worth it. I think that first moment for me was when Dr. Lock’s PA came in after the heart catheter in Boston and said, “His ventricle is relaxing. His pumping pressures are  now closer to … “normal”. We’ve never seen this before because there is no known cure or therapy for a dysfunctional ventricle. We’ll take it though!” Then when he Beasted through his fith open heart surgery in true Bronson style, like we were accustomed to him doing before the Biventricular repair, the clarity then was even sharper! He had gained almost a pound before he was even discharged with his new valve. Those LB’s have continued to pack on since we’ve been home. In a little over three months he’s gained 5 more of them and has grown two inches. We don’t think he’s really stopped growing since surgery. He inhales food like he’s filling an extra limb just to contain it… without giving it back… aka puking. He’s completely independent from the five meds that we were discharged with. Aspirin for anti coagulation is the only daily requirement he has. His craving for climbing is back in full force too! Almost every day he asks to go to his favorite playground so he can climb the “weally WEALLY SUPER DUPER HIGH ladder”. For the first time he even pulled himself up a high twisty slide. We take daily bike rides now. He runs, and jumps, and keeps up with the kids on the playground. The first month after his valve surgery he’d run and say “I can run faster now that I have a new valve”. Really the only complication we’re managing now is his damaged lungs from the scar tissue that has accumulated from the runs on bypass and intubation. Oh and a paralyzed vocal cord that he’s in therapy for. He is on an asthma regimen because he wheezes from what’s become a chronic cough when he has a virus and his oxygen levels drop. There has been a few short (less than 24 hours) runs of oxygen at home to support him.  We’ve adjusted just fine though, given all the progress.

Our “normal” before the abrupt thwart into this complex world of Congenital Heart Disease, two weeks after birth,  has been renewed to as close to our previous standard of life as it’s going to get. We are back to weekends booked with social galavanting  from one schindig to the next. The days of isolation for the next surgery are expected to have a 5-15 year span.  However, since every heart surgery is simply a palliation, we will always be vigilant about monitoring and, well, scrutinizing him for any possible signs of heart failure. Proactive action is the best defense we have to enable him to keep conquering CHD in BEAST MODE! This ride will never be “easy”. It is for now the most smooth it has been in the short four years we’ve been on it.

This post has been a month in the making! It’s been a challenge for me to muster the mental will power and the emotional recall of the deep that we’ve entrenched the past year. I discovered about myself during the four months we were inpatient that I deal best with this heart adversity when I stay grounded in the moment. When Bronson was dying after the bi vent,  I couldn’t look at the pictures or think of how he was before the surgery. It has taken me three months to accept that this new surreality just might be our reality. I’m beginning to fully embrace this journey that the Lord always intended us to be on. The quote “I never promised it would be easy, I just said it would be worth it”, resonates deep in my soul when I think about the only significant defect Bronson’s once half a heart now has, is an artificial tissue valve. It is starting to feel worth it.

THANK YOU, everyone from the Heart Center at Boston Children’s Hospital, for carrying out your role with so much compassion. The Lord sent us to the supreme pediatric cardiology team to fulfill HIS plan for Bronson’s heart. Both me and Eric are overwhelmed with gratitude for the relationships we’ve built with the dedicated people who have cared for us with unconditional grace. I’m always amazed when I see their commitment in action by sacrificing time spent with their families, to be at the hospital late, on weekends, and holidays to secure within their power the success of their patients recovery. They always seem joyful about it too. We even appreciate the participation from the Heart Failure team at Stanford. They too are a team with a genuine commitment to their kids. And lastly for Dr. Rhee, Bronson’s primary cardiologist here in Phx who has also been pivotal in this journey. We forever value his candor with his initial reaction about our plan to go whole heart. He was honest that he didn’t believe it would work, yet he committed to doing his part to get us through it. Obviously he’s convinced now! He remains consistent with providing quality care. We are immensely blessed with the ideal team for US!

*CLICK ON EACH PICTURE TO SEE ALL OF IT*

 

What’s been happening?

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Since our last update we’ve been so busy enjoying “normalcy” free from the burden of an impending procedure/surgery, that I haven’t considered how many of you are still interested in Bronson’s journey and even invested in his overall well being. Please forgive me for being a bit selfish! We still often acknowledge how grateful we are for each  of your personal support and those of you who collectively as a whole have cheered for us on the sidelines. THANK YOU!

Now onto an all inclusive update about “What’s been happening” that will encompass major events along with some minor news yet still worth highlighting.

 

 

GOING BACK TO BOSTON…THE DATA SAID SO          

Stanford had advised us when we were there in March for the heart catheter that the Melody valve in the Mitral position was leaking and would need to be expanded to seal the leak. This is the valve that is still in the experimental phase for the mitral position, that only Boston is using.  So Stanford had recommended that we go back to Boston to dilate it.  The appeal to choosing this valve for Bronson when it was surgically placed on 8-6-2014, ( less than 3 weeks after his bi vent surgery), was that it can be enlarged in the Cath Lab as he grows. That is exactly what the team in Boston intended to do during the Cath, except that they couldn’t determine the source of the leak. They couldn’t decipher if the leak is through his valve, which would mean that dilating the valve would’ve made the leak larger or if it’s around the valve which would have resolved the leak, but with a potential risk of pushing the valve back into his ventricle creating more obstruction. So the final consensus is to surgically remove the Melody valve and replace it with the smallest adult tissue valve. We leave this Sept 29th for that surgery scheduled Oct 2nd!

Along with the determination for surgery, the data from that cath also revealed a “MIRACLE”.  The end result from his Bi Ventricular repair last July 18 that put us on the path to transplant, was his dangerously high lung pressures from his “stiff” Left Ventricle that was in diastolic failure. We discovered from the cath at Stanford, in March, that his lung pressures have resumed to the normal range. And now we know that his ventricle is RELAXING! “Diastolic Dysfunction ruled out/mild”, is the exact verbiage taken from the Echo and Cath reports. His ventricle has grown because HE has grown and continues to grow! So by the Lord’s amazing grace and abundant mercy we have escaped transplant… for now.

                                                                                                                                                                                                          

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In the waiting room to be taken back for his Cath

 

 

 

 

 

 

 

 

 

 

 

 

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Stef! Our fave NP and friend.

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“Reunited and it feels so”…. like we were just here!

 

 

 

 

 

 

 

 

 

 

 

 

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BUSTED! Taking candy from Janet’s drawer…. he sure does feel comfortable on 8 East!

 

 A WISH COME TRUE

Bronson’s wish was to see Ninjago and Emmitt at LEGOLAND. Our Make A Wish girls, (Wish Grantors) had arranged for us to go, mid May, to LEGOLAND in California and also see Disney Land too. Since those parks are each located in different cities in CA, we were rerouted to Florida where both Disney WORLD and Legoland are in the same city. We stayed at the Give The Kids The World resort and spent about 2 hours total at Legloand.  The rest of our time from the five days of our seven day trip was maximized at Disney World.  They treated us like royalty anywhere we went on the Disney property.  It was quite surreal! It made our Legoland experience that much more underwhelming.

I shared below a small fraction of the total memories captured. Enjoy!

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Giggles with Mickey!

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He did the “Hot Dog Dance” with Mickey!

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He’s charming “Sofia”

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Goofy Golf at Give Kids The World

 

 

 

 

 

 

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We rode the Chevy Test Track at Epcott 3 times because he had so much fun creating his virtual car. It was his fave ride!

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Enamered with Donald

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Fam photo

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Flirting with Tinker Bell AND even got a KISS on his cheek from her!

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Star Wars day at Hollywood Studios

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He pushed Darth’s buttons and turned his mask off 😉 … OH NO!

 

 

 

 

 

 

 

 

 

 

 

 

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The Sand Monster negotiated his laser gun from him and Bronson got it right back!

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Laser Blaster!

 

 

 

 

 

 

 

 

 

 

 

 

 

THE THREE P’S

Physical Therapy:

Bronson is loving getting stronger from his PT. His therapist is God sent! She’s exceptional with motivating him to really push past his limits and set new ones to overcome. Since starting therapy he’s been obsessed with flexing his muscles and showcasing his newfound strength. The constant “watch me, watch how strong I am, watch what I can do” can be overwhelming for anyone who gets enticed by his charm to … “watch him”!

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So proud! Each block represents how many times he completed the obstacle course that incorporated stacking them.

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Lots of deep stretching to encourage his lungs to expand.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Pulse Ox:

Before we left Boston after his Bi Ventricular repair, Dr. Blume arranged an altitude test with Pulmonology. We found out that his lungs would require supplemental oxygen to accommodate higher elevations. It was discouraging for us to watch his O2 saturations decline so fast at an equivalent to 5,ooo feet. We’re “camper’s” and the only way to escape the desert furnace in summer is by traveling North to altitudes much greater than 5000 feet. However since we discovered that his lung pressures were resolved we did our own retest on the plane to Boston for the cath this past July. His O2 sats were steady at 95 -96 at essentially 8000 ft real elevation before they quickly declined and we had to start his Oxygen Concentrator. 8000 ft is a significant improvement to the 5000 ft during the elevation test. That experiment gave us the confidence we were seeking to trek him up North and see what would happen at actual altitude. We are encouraged by the outcome. His oxygen saturations were stable at a range of 94-97 at about 5000- 6500ft. They did dip down to 90-91 with exercise but promptly settled in at baseline once he rested. Now we feel ready to try camping and will of course have small O2 tanks with us on standby. Bronson’s first camping adventure in the raw outdoors will be this coming weekend! He is so thrilled.

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There it is at the bottom of the Mogollon Rim, on the Houston Mesa Rd… for you Arizonanites!

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And on the finger clip too.

 

 

 

 

 

 

 

 

 

 

 

 

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Exploring a trail.

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It was his first time seeing a forest.

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King of the rock!

 

 

 

 

 

 

 

 

 

 

 

 

 

Pre School:

Learning is tons of fun for Bronson. Socializing though is his favorite part of school! Three days a week when I pick him up and ask him what they did that day, he only shares with me about the snack they ate, the game they played, or the song they sang. We are assured that he is learning because throughout the week he will randomly talk to us about a variety of topics that we know he’s not learning from us!  His last day until we return from surgery was Thursday the 10th.  So from now until we leave on the 29th we will be in our official germ isolation period in attempt to keep him healthy for surgery on 10-2.

 

 

 

 

 

 

Paths

blog postHere we are again, facing multiple paths that we can take on this whole hearted journey , just like we were when we started. We had the option to continue with single ventricle palliation, go four chamber, or compromise in the middle with essentially one and half ventricle. While it’s empowering to have options it can also instill indecision with what path to take, and fear, and doubt about that decision. At this point Eric and I both have learned that whatever choice we make for Bronson’s care we half to be confident in our decision without regret, regardless of the outcome.  The best way to gain that confidence, for us, is with research about each procedure followed by extensive discussions with the medical team, and then of course prayer to ultimately guide us. We used that same due diligence that we executed when we made the decision to risk the bi ventricular repair, that we used to decide that we are going to wait at least six months before we make the decision to list Bronson for a heart transplant. The data that was gathered from his heart catheter this past March, at Stanford, offered us the option to choose this path.

The last cath he had in Boston revealed that the high pressures in the left side of his heart from his stiff, non compliant, ventricle that isn’t relaxing enough to completely fill with blood, (medically known as Diastolic Heart Failure), had created elevated pressures in his lungs, (Pulmonary Vascular Resistance). The measurement for his PVR score in that cath was a 5, with 6 being the cutoff for his lungs to effectively withstand a donor heart. His PVR score from the cath at Stanford, is less than 2!! . Now, instead of transplant being a guarantee like we all had expected just based on the 5 alone when we left Boston, it’s now a choice. One that me and Eric feel comfortable waiting to make until we reassess his pressures again at the next cath in six months.

The team at Stanford and the team at Boston, both feel that in a perfect scenario that listing now based on the high pressures in his heart alone, excluding the PVR since it’s no longer compromised, will give Bronson the optimal outcome as long as the perfect heart became available. He hasn’t grown since he was admitted for the bi ventricular repair. His growth is significantly delayed due to the high left sided pumping pressures. That alone continues to make transplant the most desirable outcome for him. In a perfect scenario if we list him now and a perfect heart became available, he would start growing instantly. That is not a likely reality though because he has a 95% antibody risk. This means there is only 5% of donor hearts that will be compatible with his blood or a 95% risk for rejection with a donor heart. Stanford’s protocol for combatting those antibodies is an IV treatment (IVIG) to neutralize them BEFORE receiving a heart. It would entail a 12-48 hour inpatient stay once a month to administer the treatment. Listing him now would mean we’d need to start the IVIG now without any guarantee that it would work. This path is not ideal for quality of life for a toddler that adores people who’s been in semi isolation his entire life to stay healthy for impending surgeries. We feel like this is the first time we have some relief from an expected surgery. The three of us are so eager and ready to just live life!! Since we have the option to wait, we’re taking it.

The confidence for this decision came from extensive conversations with the Stanford team,  Dr. Blume, his heart failure doc in Boston, and Dr. Rhee our cardiologist here who has been the one constant participant from the start. We value him so much! They all agree that even though proceeding with transplant now presents the most optimal outcome, neither of them believe that Bronson is in any imminent danger from waiting. Since he has the Melody valve in the mitral position, we need to continue his care and follow up with Boston. Dr.’s Emani and Tworetzky are leading the trial for the Melody in the mitral position so it’s only being done at Boston. It’s important that if it needs to be expanded or any adjustments made to it that those procedures are done by the team there. We’ve already arranged with Dr. Blume that the next cath to check pressures will be in Sept with the expectation that the valve will need to be enlarged. Until then we’ll continue to do what we can at home to enhance his nutrition so we can try to get him to grow. If he grows, his ventricle grows, he gets stronger, and his ventricle has more chance to relax. He’ll also be starting preschool in August and we have our Make A Wish trip in May!!! We leave May 12 to Walt Disney World and Lego Land in FL and return May 18. An entire week of stress free fun! It’s exactly what we all need. Thank you to all of you who’ve ever donated or participated in a fund raiser for Make A Wish! We’re grateful that we get to personally indulge in the benefits of your generous contributions. I will aspire to post the pics from the trip and an update too.

 A few have inquired why I’ve left facebook. First, I personally don’t have the emotional nor mental stamina to endure anymore pain and heartache that this heart world brings outside of Bronson’s battle with Congenital Heart Disease. For me it is truly an internal struggle to balance the losses with the joys of other families who are fighting their own CHD battles. It’s too taxing on my faith and my personal perseverance. I know that I need to remain stable in my life and truly experience every moment free from external stress. Since I don’t have the self discipline to simply not check my fb page, the only way I can avoid my obsession with it is to make it inactive so I don’t have access to it. I’ve gone “unplugged” from almost all media outlets, including tv and radio… thank goodness for playlists and satellite radio! I do continue to follow fellow heart blogs and right now my heart is very heavy for two specifically that are in the trenches struggling to conquer their own battles. One is a transplant rejection and the other is a post bi ventricular repair with a valve replacement. Both of these moms offered support while I was  in the midst of our fight after Bronson’s last 2 surgeries. It’s important to me that I mention these specific warriors because both of them have offered me so much hope. They’re both valiant fighters! Anyway, I can still log on to fb and  post the link to these updates, which for now, is the only thing I’ll continue to use it for. Those of you who have my contact info have already reached out. For those who don’t, my email is tabatha95@hotmail. com and Eric’s is ericbeckphx@gmail.com. Please don’t hesitate to ask for updates at any time! We will continue to give side reports to those who ask. If we don’t update until the next cath in six months it’s because we’re loving life right now and “no news is good news”! As always, we remain grateful for all of your support. It truly helps to keep us grounded knowing that we have friends and family who have carried us through the challenges while still rejoicing the triumphs too.

Of course there are pics below:

PLATFORM!

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My previous update I explained the difference between Bronson’s clinical status going from a “tight wire” to a “two by four” and that the optimal status would be “platform”. Two by Four was defined by significant medicinal support (very high amount of diuretics with a daily fluid restriction), and oxygen therapy at night to hopefully prevent the Pulmonary Vascular Resistance in his lungs, created by the high pressures in his heart, from increasing and maybe even decrease. Since that last post Bronson’s diuretic support has been substantially decreased by more than fifty percent. There hasn’t been any necessity to neither track nor limit his fluids. His intake is naturally aligned with his output, which means his heart is functioning better.  Also, his baseline heart rate is now 120-125 which is down from 130-135 and his O2 sats are 95-100, up from 90-94! In my mind he’s achieved PLATFORM STATUS!  Even though we’ll continue the oxygen at night with the expectation that it will keep the resistance in his lungs stable, his quality of life is much more “normal” now, except for the vomiting. He had been puking daily while he was still inpatient but it had stopped when we got home because he resumed a solids diet. In the hospital his diet was 90% formula via his feeding tube which provoked reflux that made him puke. After being home for a few weeks free from vomit he gradually started to again. It slowly increased from just hacking and gagging to full on throw up from once a day to a peak of three to four times per day. He was loosing weight and bottomed out at minus four pounds before Me and Eric finally, after a lot of trouble shooting from food allergy to trying prevacid for reflux, had the realization that he was too dry from the diuretics. I’m still not exactly sure how we determined that but we are beyond relieved that we did. We had some dark and agonizing days at the peak of it all. We ‘re still dealing with some vomiting. It’s declined to about three to four times a week though and he’s gained back the four pounds he lost. It’s still not “norma” but we’re grateful for the improvement. His cardiologist at Stanford is pleasantly shocked that he’s thriving with reduced support, yet still cautious. He is still expecting that transplant will be the inevitable outcome.

We’ve made two round trip road excursions to Palo Alto, CA for appointments at Stanford since being home from Boston. It’s about 13-15 hours on the road, ONE WAY. The overall logistics and cost of driving are actually more appealing than flying. Unless we can get an Angel Flight arranged, we’ll continue to drive. Our first trip was mostly for the purpose of completing the transplant evaluation and meeting Dr. Rosenthal, the cardiologist who is now Bronson’s transplant doctor.  The second trip, we just returned home from this past weekend, we met with a Hematology doctor for some explanation about the Hemolysis (red blood cells breaking), a suspected Heparin allergy (a reaction to the blood thinner used during surgery), and low platelets. She concluded that he’s not hemolyzing anymore and she’s not convinced that he had a true allergy to Heparin when he tested positive for it. She’s still working with the Boston team though to prove that. His platelets have also started to climb based on recurrent blood draws… done weekly, which Bronson is such a brave lil rockstar for. We did see Dr. Rosenthal too. He still feels that despite the clinical improvements, Bronson will need to be officially listed for transplant. We scheduled a heart catheter for Feb 13 at Stanford to check the pressures in his heart and the resistance in his lungs. The pressures in his heart could still come down because they have in other kids after the bi ventricular repair. But since Bronson’s lungs are already resisting the elevated pressures from his stiff left ventricle, we unfortunately don’t have the time to wait for his ventricle to learn to relax. Waiting could permanently damage his lungs to the point where a donor heart would be pumping against them and wouldn’t withstand it. It would fail. So we’re expecting that after the cath he will be put on the list for a new heart.

Even though we trust in our hearts that the final outcome is according to the Lord’s will, it still feels devastating to me (if I think of about it) that the gains he’s been making are simply to keep him in good status for a new heart. Devastation is not my preferred emotional nor mental state so I choose not to put a lot of thought into it. Instead I try to just truly rejoice in the reality that he has more energy and endurance with a whole heart than he did with a half of heart. Overall he’s happier because he’s not consistently tired like he was before the bi v repair.  A constantly tired toddler meant what felt like never ending cranky which lead to an insane me. He even has enough endurance to forgo naps, which still makes me crazy, just the good kind! To add variety to our days, I’ve started him in a “Intro to Pre School” class for forty five minutes once per week for 4 weeks and a tumbling class, both sponsored by the city. Today was his first day and he did great! It’s perfect… for both of us. It’s short enough for me to stay and peak through the glass window and for him to learn to sit still and focus on a task. Per the teacher, “he was to busy to make any projects”, so he has some room to improve before the real deal and I have some time to trust that he can be without me. It’s all part of the attempt to normalize. We’ll keep working on our “normal” while embracing the moments we have together as a family before transplant and we’ll update after his cath in February.

Two By Four and Transplant

Waiting for a very important page from Catherine for his thickener

Waiting for a very important page from Catherine for his thickener

We are home! Our flight landed in AZ at 10pm MST, 12 EST… our body time last Wednesday. Bronson loves it here. He is thriving since being back. His weight remains stable, along with his oxygen saturations, and his appetite has improved. When Dr. Blume first met with us, Bronson was “Failure to Thrive” and dying, essentially. He’d lost 8lbs, was in respiratory distress for the 7th time, and IV diuretic/ oxygen dependent.  His life was on a “tight rope”. Her goal was to progress him to a “two by four” and then finally to a platform. Her team indeed saved his life by restoring his nutrition via continuous calories through his newly placed feeding tube, calculating a reasonable fluid restriction, and successfully transitioning him from IV diuretics to oral which then led to weaning oxygen. From our perspective, he’s for sure on that “two by four”, figuratively and well, literally too. He has two ventricles and four chambers. 😉 He’s not quite a platform though. We were discharged from a four month hospital stay with about an 28oz fluid restriction in a 24 hour period with fierce diuretics and potassium supplements. Platform status would only be achieved with free flowing fluids and less diuretics. With time, that could be a reality for Bronson. We’re not counting on it though. Just simply hoping … and praying too. We continue to submit to the Lord’s will, just like we did when this “whole heart” option was presented to us. Currently, it could be the Lord’s will for Bronson to have a new heart entirely. The probability of transplant was apparent to me when I became connected with a group of moms/dad’s on Facebook who had already journeyed the Bi Ventricular repair with their child. I learned that the repair could fail even risking loosing transplant as an option. For those that remember (Bronson’s groupies 😀 ) I posted an update detailing our emotions from our risk/benefit analysis. Here’s that post for those that missed it and those that want the recap: http://bronsonbeckman.com/wp-admin/post.php?post=962&action=edit

During our time in the hospital when Bronson was sick I couldn’t look at pictures of him healthy. Now it’s a task to look at pics from when he was sick. There’s benefit in living in the moment. It helped me to be mentally impaired to the past, avoiding looking back. Currently, the moment that I’m in is gratitude. I am thankful (along with Eric) for the friendships we molded and the “family” we acquired from our “whole heart” adventure we began in Boston. The one that we are going to continue in Palo Alto/San Francisco CA at Lucille Packard Children’s Hospital aka “Stanford”. I had always known that if transplant became our reality that I’d want to ride that coaster close to home! Stanford is about a two hour flight from AZ and an 11-12 hour drive. For Bronson, the transplant process could be a three year venture. He had 8 blood transfusions after his bi ventricular repair. Multiple transfusions lead to high antibodies in his blood which means any heart he receives would be rejected by his body. An aggressive plan to neutralize those antibodies could involve a multitude of IV anti rejection therapies over a course of three years, along with intense monitoring for rejection via multiple heart catheters. We would be required to stay close to the hospital before and after surgery. A 2 hour flight versus a 6 hour flight to Boston or to even have the option to drive makes CA the most practical place to be. It’s also reassuring to know that the hospital has successfully recruited several of top talent from Boston! We’ve been referring to it as “Boston West”.  We agreed to complete the full evaluation with Dr. Blume’s team when the results from the last heart catheter revealed that we would be need to prepare for this new journey.  This four chamber heart is pumping with such high pressures that it’s creating potentially dangerous resistance against his lungs. That high resistance, along with his elevated anti bodies, had Dr. Blume concerned that other centers would deem Bronson too high risk and decline him for transplant.  We completed a full transplant evaluation so she could have data to send.  The team at Stanford already confirmed their confidence with transplanting him successfully. They still require their own data though which is why we need to complete their protocols for evaluation too. We have a tentative date for Dec 12 that will be confirmed today. Meanwhile though, he is on a prescribed .25 Liter of oxygen  at night to relieve that resistance temporarily while he sleeps. It essentially gives his heart and lungs a break. There is still a very dismal potential for this heart to succeed. We’ll know in three months after the first heart cath in Stanford to re measure the resistance from his lungs. If it is reduced then we MAY detour the transplant train and continue to monitor him closely with frequent catheter’s. Based on the first appointment with his AZ cardiologist yesterday, the hope that this heart is not “completely toast” does have some glimmer. His average heart rate has come down from about 125-135 when we left Boston to now it’s about 121-135. His red blood cells continue to reproduce at a rate high enough to compensate for the ones breaking through his valve and his O2 saturations increased to 94-98. Each of these are clinical markers of some improvement. Still, until his function is on a “platform” and providing a desired quality of life, one where he can drink leisurely (juice, water, and milk) preferably not alchohol … leisurely ;-),  we’re mentally and emotionally prepared for a new heart. I know I can’t express enough humility for everyone who has unselfishly and generously offered unconditional support financially, emotionally, and mentally. I honestly feel like “thank you” is too simple to encompass our appreciation. For now, it’s all we have though. We do have pictures to share!

 

November!!!!

IMG_20141031_181918_149Here we are, November 1st as I’m typing.  We’re still moving along day by day and finding some joy in the little accomplishments.  Bronson’s weight has been about the same over the past couple weeks (13.2 to 13.5 kilos) with little moves up or down recorded every day.  The climbs bring less satisfaction when the falls bring frustration. Over all it’s ok as the team isn’t too concerned. He’s it least not loosing big chunks of weight, just little bits that he picks right back up, so overall stable.  The greatest excitement is that he has been breathing without O2 and on room air only, (no oxygen tank to drag around)! He’s also detached from Milrinone (the continuous IV heart therapy). With both of these methods of support being gone, his energy levels have remained constant.  He has been all over the place since being “UNHOOKED”. He’s been outside more to the garden, to the play rooms, learning to ride a bike (well technically it’s a trike but just getting the pedals going has been great to see), and the biggest one is going to the playground! It was where we celebrated being detached from his IV tree.  Quite a while ago, when he was almost at his lowest sick point,  Tabatha took him down there and after climbing on one platform he said that it hurt and since then he’d refuse to go back.  These last two trips have been completely different.  He has been climbing steps, sliding down slides, playing with other kids….a lot like his regular old self.  He is still pretty weak as far as his endurance goes, but that’s improving every day with the help of Pysical Therapy and some spiffy new leg braces with construction vehicles on them. The Rehab supervisor observed that his leg muscles are so deconditioned from too much time in bed, that he was using his hips and his lower back to compensate which was making him wear out faster than he should be. Basically, he was doing a full body workout just to walk. Now he wears the braces to walk any distance aside from just hanging out in the room.  Since wearing them, he’s been walking significantly farther and for increased periods of time. We were told to expect about 6 months to see complete improvement.

As far as technical stuff; he got his 6th or 7th (we lost count) blood transfusion about a week ago. Within in the same timeframe that he got his feeding tube, along with starting the IV heart therapy (Milirinone), the team tested for a condition in his blood called Hemolysis.  His red blood cells are breaking at a faster rate than his body is able to produce more to maintain a high enough red blood count. The cause is uncertain, with speculation though that his red cells are breaking as they pass through a “paravalvular leak” in his Melody Valve in the Mitral position. A “paravalvular leak” is a gap between the circumference of the valve and the ventricle wall. The team has just been monitoring the rate that his blood is breaking and using that to determine the timing of his transfusions before he’s anemic, until there is more data to support what the next step will be. He has a Heart Catheterization that is set up for this Wed the 5th to gather that data. They will be going in with a catheter through his groin and his jugular to check his heart pressures. There is a remote possibility that they could do something then, regarding the leak around the valve. So overall The Cath will tell us what the next course of action will be. We will update everyone later in the week with that news. Aside from the Hemolysis being the greatest complication we’ve been dealing with, he continues to heal, grow, and get stronger. He’s still getting continuous formula into his g-tube 14 hours a day to the tune of about 1000 calories a day which is calculated to maximize weight gain.  We are in the process of getting that peeled back. Tabatha with her super blender has been whipping up smoothies for him all along and has now cranked out an amazing concoction that we are transitioning him to.  She has done such a great job growing him througout his life by making really good, high quality, high calorie foods for him. This is no different, except for the method of delivery is via the tube.  The formula that B has been receiving served it’s purpose but has now outlived its benefits. He pukes every morning after being having it pumped into him through the night and also once during the day from the intense reflux it has created in his GI system. We are very tired of it. As long as he continues to require the feeding tube to grow, he’ll continue to have a very tight oral fluid restriction. Currently he gets most of his fluid from the formula through his tube which leaves about 6 oz of “honey thick” fluids that he can drink in a day. He is still aspirating. That was confirmed to have improved a little though with a repeat Barrium Swallow Study a few weeks ago. We’ll take ANY improvement!

On a lighter note, Bronson experienced his first Trick or Treating in the hospital. Tabatha found a costume set for kids from 3 to 8, that had 3 super heroes in it; Superman, Batman, and Robin, thinking that B could choose one and the other two might be donated to other kids in the hospital.  As it turned out, Bronson wanted to wear the mask (so Batman) and that left us wearing the other two costumes. Super dad and Robin mom.  Nurses and Doctors all over the hospital dressed up and several of the floors had trick or treat stations set up.  We made the trek to two other floors and then about half of our floor, before his little legs were just too tired to keep going.  I just carried him the rest of the way back to our room.  This being only his second memorable Halloween, we couldn’t figure out at first why he kept roaring at everyone. After about a half hour in, it finally dawned on me.  Last year we went to Tabatha’s brother Mike’s house for the trick or treat evening. That evening was full of treats and tricks… LOUD ROARING tricks! Our friend Mark dressed up as a shrub and kept jumping out and scaring kids when they approached the candy bowl while we all laughed hysterically. Bronson caught on to the fun and started hiding in the bushes so he could jump out and join in the roaring. Apparently he brought the tradition all the way here to Boston Childrens Hospital!! Uncle Mike and Mark would be PROUD! We’re anxious to see what “Tricks” the three of them carry out together next year.

We continue to be abundantly blessed with all of your donations to Bronson’s Go Fund Me http://www.gofundme.com/d9lnyc account. The care packages are still coming and we are forever grateful for each of your thoughtfulness with the items you’re sending. Along with each of your support and encouragement via; text, fb, emails, calls, letters, cards, we are also humbled by the genuine care, concern, and total treatment by the entire staff here. And I mean a wide range of staff from the head chef of the cafeteria and manager of room food service to the cleaning crew to the team of docs, nurses, and therapists (music, art, pt, ot, pet, etc ) who are sincerely joyous with every improvement that they see Bronson make. He’s recently earned the title, “Mayor Bronson”, because he walks through the halls waving at everyone! The people here not only make this experience tolerable, they often make it enjoyable… relatively of course. Until the next major announcement, hopefully by the end of this week after his cath on Wed, enjoy the pics!

Forward

IMG_20141011_134720_565This Thursday marks 3 months that we have been in boston on this excursion. These past few three weeks have been a mini coaster with high and low points of recovery. The peak of good news was checking Bronson’s BNP (a measure of the stress on his heart) where 30 is normal, 300 is concerning, his first measurement was 3000. Follow up tests, after starting a drug to help his heart called millrinone, have showed 1095 and most recently 826. Still very elevated but trending in the right direction. His “fat track” is also note worthy… he’s gaining!! When he had the G tube placed he weighed 11.2 kilos (about 24 1/2 pounds) and is now ringing the bell at 12.8 (just over 28 pounds). He’s about half way back to the weight that we brought him in at. Just after we started with the G tube we were also transfered to a different team of doctors. We are now under the care of the advanced cardiac therapy team, also known as the heart failure team. Dr Blume has been really good at pushing Bronson’s care in directions that is has seemed to be needing. Aside from the continuous millrinone and the almost continuous feeding (he gets formula in his tube 16 hours a day right now) she has finally gotten him off IV diuretics. That makes almost all the meds that he is taking now by mouth And IV Diueretic INDEPENDENT!  The hardest part for all of us is the fluid restriction. His daily limit was set at 800 ml’s and most of that gets used up by the formula in the tube. For drinks that he can take, they’re still “honey thick” and he only is allowed 5 ounces which we split up to half ounce drinks. Dr Blume told us about one of the body’s mechanisims that goes ‘when the heart is working hard the brain tells the body to drink more water to thin the blood and make it easier for the heart to pump’ which is the exact wrong thing in Bronson’s situation. More liquid to drink could lead back to fluid overload again. It’s a tough battle to wage but it has been to his benefit. As a result of that, he’s up and moving alot more these days. We wander the halls of the unit as best we can with him (mostly just to the nurses station and the small kitchenette to clamor for more water). Physical therapy has been coming by every weekday to work with him and they have been impressed with his strength gains. All the mundane things that happen here day to day don’t seem worth reporting until they finally stack up enough to warrant a bigger update and then some of the things that seemed like a big deal on those few days don’t seem as important when it comes to the actual reporting. One of the mundane that should make the cut is constipation. With all the formula in the tube poor little man was “FOS” (We’ll leave that interpretation up to personal preference ;-)…. the medical translation is “full of stool” ) We asked for a copy of that x ray to keep as proof to show him when he’s 16! The team attempted to “move” him with Miralax along with another prescription called sena. Unfortunately though, combined they just weren’t doing the trick. One of our favorite nurses, Lea-ann, suggested the “chocolate bomb” which is a combination of milk of magnesia, sena, and mineral oil that tastes so unplesant that they usually hide it in chocolate ice cream. Since he has the feeding tube she just ran it in without the ice cream and three hours later we got the desired result and now have a regimen of miralax so that we don’t get “behind” again. It’s been all forward movement since then. Forward progression with weight, heart function, fluid reduction, O2 wean, strength, and overall mood.  We both feel blessed that we continue to find joy in the little things. Despite an obviously stressfull situation, we have yet to experience a continual state of stress. The Lord has enabled us to endure the trying times yet still embrace the daily triumphs.

. **REMINDER**

: Click on each picture to enlarge and see the whole image.

the bouncy road to recovery

IMG_20140901_115800_577I just noticed that it has been 3 & 1/2 weeks since our last update here on our 2 month (so far) journey. We have been dealing with a lot in the moments that then seem like not worth reporting because of the dissapointing results. We have been in and out of the ICU a total of 7 times now. They have been almost all due to fluid overload in Bronson’s lungs. We had a barium swallow study a few weeks ago that showed us that he had been aspirating every time that he had anything to drink ( the study had him sit in front of an x-ray while swallowing different consistancy fluids that have been laced with barrium that will show up on the moving screen). In order to combat the continual breathing of fluid the recommendation was to go to “honey thick” for all his fluids which is just about the consistency of pudding. It has helped the aspiration but seemed to slow his appetite down. It helped the fluid balance with his lungs a bit since now the only build up was in the tissue and not in the air sacs themselves. More recently we discovered that he wasn’t handling the attempts at transitioning him from iv diuretics to oral and that one of them was at a pretty low dose that needed to be increased a bunch. (Before this surgery at home he had been on a maintenance of diuretics that was the same dose as the smallest adult dose.) All these things have been conspiring against us to land us where we are currently. Yesterday he had another little surgery that they compared to a body piercing. Let me explain, no that would take to long, let me sum up. For 2 months now Bronson has been nutritionally deficient and so has lost a lot of weight. Our little man is really a “little” man! We have been fighting tooth and nail to but some weight back onto him but loosing the fight. To help us in this fight for his life today he got a G tube. It is called a mickey button and will let us feed him through the night while he sleeps. The recommended daily calories for him were set at 900 to 1000. In four days that included this last weekend he ate an average of 1000 per day, and lost weight every day. The G tube should allow us to augment him to the tune of about 500 extra a day. Hopefully that will be enough to get some muscle mass back on him and get us out of here before winter comes around.
On another note, thank you all for your amazingly kind generosity. It makes us feel very loved that everybody wants to do something to help us. The bumps in recovery we kind of expected but the total disconnect from our regular daily lives is a very difficult thing that I hope none of you ever have to go through in this way. The go fund me account that Mike Deines set up for us is almost to the goal and we have talked about it a bit. If it ends up over we have decided to put that extra money to good use and donate it to a heart defect organization. We already have a few in mind but we’ll see more about that if it happens. I have asked a couple people already, but please reshare the link to who ever you can and maybe we could go over the top. It is www.gofundme.com/d9lnyc . Thank you all again.

Sorry there’s no pictures again. We’ll try to get some up soon

Love you all!

Eric, Tabatha, and Bronson

Time Flies When You’re Having…. (round three)

IMG_20140817_140335_956

Its always amazing how fast time moves. The 6 weeks between Bronson’s cath at the end of May and his actual surgery are already a distant memory, and now we are already 6 weeks past surgery and this time has been a blur. Time in the hospital is different than anywhere else, it seems to be moving very slowly and then it’s suddenly gone. These last two weeks have been lots of activity but not a whole lot of fun. There has been some good times and some highlights and lots more bumps and hiccups. After the valve replacement, the melody valve seemed to be doing a good job. Bronson’s revovery has been moving along. He has been eating pretty good, one evening devouring three quarters of a personal pizza, and Tabatha has been making him lots of high calorie treats and snacks. He has started doing physical therapy to try to recover some strength but as of now he’s still very weak from muscle atrophy due to all this time laid up. At least there has been some progress. His poor little stomach has been taking a beating though, extra meds and potassium supliments have been wreaking havoc on him and then he has a hard time keeping food down. He also has been not responding to his diuretics like we have all been expecting. The “heavy hitters” have been doing an ok job of pulling fluid away from his lungs which makes it easy for him to breathe but when they tried to switch to a lighter medication his lungs backed up so they had to give him another iv dose to help out. That was about a week ago, in the subsequent week they tried to just keep him level with the heavy meds which still didn’t keep the fluid clear so he went back on iv dosing which led to going back into another catheter procedure. That was yesterday and in the last 24 hours we have found out that he had an “out flow tract obstruction”. From what we were told the mesh cage that holds the Melody valve in place (I have been comparing it to a chinese finger trap, just a more open weave) is longer than the original valve and so it sticks into the left ventricle a bit. With Bronson’s small ventricle the edge of the cage has been very close to the wall of his ventricle and that is causing a restriction going out to the aortic valve. The fix that they tried yesterday was to expand the whole cage and valve a bit  and also open up one of the “cells” of the weave to try to let some of the blood flow go through there. This is only the second time they have tried to do this kind of repair this way, but then again this is only about the 23rd melody valve that they have put in so there isn’t a whole lot of precedence for it. Will it work? Only time will tell. As for now we are back in the ICU on a ventilator (hopefully coming back out tonight) and we are going to restart recovery again again. Hopefully the 3rd time is the charm.

Oh the lighter sides grandma (“granny Mac” Jeanne McDowell) was here for a week and got some chances to read to Bronson and see him walk too, and play in the activity room in the step-down unit that is known here as 8-east. Tomorrow fellow heart mom Theresa Brakefield volunteered her time to come up from South Carolina for a few days and give us some friendship and comradory. Next week Bronson’s other grandma (“granny D” Rhonda Deines) is coming up here so he is just getting a parade of wonderful people coming to see him. Also, all of the staff have been very good to us (it seems like we’ve been here so long that we’re family). Our surgeon Dr Emani and our cardiologist Dr Tworetski and his nurse practioner Terra, the ICU doctors, nurse practioners, nurses, cardiologists, echo techs, respiratory techs, step down NP’s and nurses, and even staff that have had us with them in the past like Stephanie and especially NP Stefanie Caldwell have been doing a great job of helping us along through this very stressful time. They make it tolerable…and sometimes even enjoyable. We are hopeful that this round (round 3) will get us past GO…. ing home!

 

 

 

A new tune

Just a quick blurb tonight. I posted last nights update from in the ICU after B being moved in the middle of the night. I woke up to Dr Emani knocking on the wall by the bed space. He, very somberly, said he belived that Bronson’s mitral valve was to blame for the problems he was having and that he wanted to replace it with a new expandable valve called the “MELODY valve”. We had known that the valve repair with his last surgery was temporary at best, maybe buying us up to a year before it would need to be replaced. It was 8am when he woke me up and wanted Bronson for the 900 case. I told him to go ahead and set it up because tabatha already had the expectation that the valve would need to be replaced in about 3 weeks. She was half a week off its means that she wasn’t right (hahha). The surgery went very well. Bronson was on bypass for only about 2 hours. When Dr Emani met with us after leaving the post op he had a pep in his step and a grin on his face showing the confidence of a well performed surgery. As of about 6 o’clock Bronson was resting comfortably and holding great numbers. The pressures in both of his atria are showing in the seven or eight area down from the high teens after the last surgery. The plan is to start waking him back up tomorrow and the expectation is that his recovery from this surgery should be a lot quicker than the last one. We’ll keep you as updated as we can but for now this has been a very hectic 24 hours so good night everybody.

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