Where the Miracles Happen?

 

Dear Dell Children’s,

If I have to listen to one more radio advertisement about you and your “expert” care for all levels of illness and conditions, to include complex heart conditions, I think I’m going to lose it.  Amidst all of the pain, the tears, and most obvious, the loss of the most important piece of us, we’ve never once received any attempts to reach out to us to know whether Palmer made it, or if he passed.  But we did receive this bill.  If you think you’ll ever see a dime of this, good luck, I think I’d rather waterboard myself continuously for the next 50 years of my life than let you see another dime.  

It looks like you’ve already received at least $110,543.48. Let me ask you a question, is this the going rate for failing to properly diagnose and treat my son?  Is this the going rate for bouncing back and forth on what to do only to decide to ambush us the morning of surgery with a “Sorry, we won’t do anything.  We recommend comfort care”?  I know for a fact that you messed up.  I know that things weren’t done that should have been, and things were done that shouldn’t have been done.  I know this because I learned it while spending nearly 41 days fighting alongside my son at Texas Children’s Hospital.

“The days spent in Austin with his condition definitely put him at a disadvantage and made it more difficult for him to pull through and recover” said one Dr.  His lungs wouldn’t heal because they had been damaged severely during his time in Austin, while on improper ventilation settings and then there is, of course, the lack of action on repairing his TAPVR right away.  Oh, and don’t forget waiting five days to do a cath procedure to check the pressures and flows into and out of his lungs, and into his heart.  My research after the fact showed me just how negligent this was.  This should have been done day one, you know, right after he desated and stopped breathing for about two minutes.

I sit on a daily basis and think about these things.  I hold myself accountable for not doing more.  I hold myself accountable for not taking more action when I saw you, Dell Children’s taking little action.  But the truth is, I didn’t know what I was seeing, and I didn’t know what actions were good and what were not good.  I didn’t know this when Kristen was still pregnant with Palmer and we found out about this.  I didn’t know when we asked our cardiologist about other hospitals, specifically TCH, and were told that they could handle Palmer’s case here in Austin and at Dell Children’s.  I chose to trust those that held my son’s life in their hands.  I chose wrong!

The lack of knowledge and the lack of character to admit you were out of your league, this all directly impacted my son’s death.  Ignorance is not an excuse.  Trust me, I hold myself over the flames every day for the ignorance I showed.  We were fools for not doing more.  We were fools for trusting that you had our son’s best interests in mind, but I will no longer sit back and hold my tongue while you continue to do the same thing to other families, while you make promises you aren’t capable of keeping.  Just admit you aren’t equipped to handle cases such as Palmer, and NEVER do it to another family.  Stop spending all of the money that you made on Palmer’s death on billboards and radio advertisements to lure other unsuspecting families into a false sense of comfort. I’m tired of saying nothing.  I’m tired of being PC.  I sit and stare at my son’s urn all day.  It is a constant reminder of what happened.  The level of incompetence that was ultimately displayed was only overshadowed by the sheer mountain of pride and failure to admit your limitations.  Oh, when push came to shove and all the cards were in, Palmer called your bluff and you had to finally admit you couldn’t do it.  You couldn’t help our son, but the nearly six full days it took you to admit this left our son worse for the wear and at a much greater risk of death than when he was brought into this world on April 1st.

 

Shame on you for what you did and didn’t do.  Shame on you for never reaching out to check in and perhaps send your condolences.  It is the little things in life sometimes, even when the biggest thing imaginable was lost forever.  So you’ll excuse me if I never pay a dime of this to you.  And furthermore, if you’d like, I can create a bill of my own and send it to you.  I’m just not sure how I can quantify the loss of my only child, my only son.  Any suggestions?  This isn’t the last you will have heard from me.  We may be down, but we are not out, and we will continue to pull ourselves up from the bottom of the mountain, because the light at the top is too bright to ignore, and his beauty will shine forever!

Advertisements

Palmey Bear Brownie Co. What kind of Bear is Palmey Bear? Palmey Bear is a Brownie Bear!

 

My mind is cluttered with a plethora of competing thoughts. The one constant is Palmer. I can’t get the image of him out of my mind, and not just the image of him lying in his bed at Texas Children’s, but also the image of what I have always imagined him to be. The truth is, Palmer was exactly as I imagined. This truth makes the reality of our life without even more difficult.

My other truth is the necessity to move forward, stronger and wiser as a result of our battle and loss. I know this to be a crucial mindset, but there is no blueprint for me to apply it. Sure, there are books that I can read, but these are of very little interest to me at present. I’ve tried to slow my thoughts on how to honor Palmer. I’ve avoided the very same pages I lived on when we were in the middle of the fight. These pages now elicit pain and anger, regret, doubt, and an excruciating understanding of what we no longer have to fight for.

For the very first time I’m realizing I’ll never get over this. This pain will never leave. My hope is that I can transform the pain on a daily basis. My ability to do this is paramount and directly proportional to our future happiness and success. I struggle with my words. My thoughts are many, but I am unable to express them the same way I did when I had Palmer to talk to, touch, and pull strength from.

It is impossible for me to fathom the impact he has had on me. At times I have very little control over my emotions. I try to push past the pain and at times this works, and in other moments I fail miserably. I’m trying to push forward with business as usual. Get back up on the horse and do what I was doing before. Demo, Demo, Demo! The problem with this is, there are way too many children in the grocery stores. I’ll spend four hours doing a demo at Central Market, and in that time I will see at least two dozen reminders of what I had in Palmer. During a recent demo a supplier of ours, who had no clue as to what had happened, approached me as he had done many times in the past. Before Palmer (B.P.) we would have these conversations on a weekly basis. This conversation started in a similar fashion, but quickly changed when the question of where I had been came up. I proceeded to explain in detail what happened, and his responses were genuine and perfect. “That’s just horrible, that just really sucks!”. My thoughts exactly. But as I continued to talk, without warning, I broke down, in the middle of Central Market, on a Sunday afternoon at 1:30. I tried to control the cry. I tried to temper my emotions, but it was out of my control. This is my new normal.

This is the reality that Kristen and I now face. In an instant a thought triggers a breakdown. Don’t get me wrong, we couldn’t live without these thoughts, and these breakdowns keep us close to Palmer, but it is as if we are skating barefoot on the blade of a knife at a very high height. The wounds remain fresh, allowing us to feel the pain and love, but at some point the pain becomes unbearable and we are left with the fall.

We try to push on, move forward, and keep ourselves occupied. We replace the thoughts of Palmer with the worries of the many. How do we make money? How do we pick things back up and pay the bills. We hate asking for help. During this experience we have received emotional, spiritual, physical, and financial support from many. Without this support we would have never made it out the other side. But now we’re standing on this side of things trying to figure out how to pick back up the momentum  we had created at the beginning of the year. Rather than simply ask for help, we gravitate towards providing a product and/or service.

Of course we’ve always thought we had a great product and service in Pretty Thai®, but as we move forward I try to think of ways to directly honor Palmer, his name, his fight. Heart Strong is the obvious, and thanks to many who purchased t-shirts, Palmer’s name and story is being carried on all over the country, and at times, the world. But the harsh reality of life is the necessity of money to survive. We want to find the perfect way in which to honor Palmer and through this help others with their fight and struggles, but we don’t know how to do this when we are in a daily fight to survive. So we think of other ideas, the most recent being the Palmey Bear Brownie Co.

Kristen makes amazingly delicious gluten-free brownies that I have always loved. We would serve them on the food truck and they were extremely popular. So to honor Palmer, we would like to offer these brownies in the shape of a teddy bear.

We are still working on getting our logo designed. The teddy bear baking sheets are in the mail, and I’m already sourcing the ingredients and packaging, but what we really need are good folks to buy them. It is our hope to combine this with Heart Strong at some point in the future; and if Pretty Thai® can get to the level that we hope, we can take the proceeds from the Palmey Bear Brownie Co. and use them to bring hope and strength to others facing similar struggles and tragedy. The path is still not clear, but as always, we can’t do it without Palmer’s Army! Brownies anyone?

Eulogies to Palmer

 

Kristen’s Eulogy:

I wanted nothing more than to be a mother and I became one on April 1st at 2:03pm to an 8lb 12.8oz baby. But my motherhood journey didn’t start or end the way I wanted it to or the way most mother’s experience.

I often go back to the days I had with Palmer and I so vividly dream of being able to rub my face up against his head of hair and take in the warmth and smell one more time. I think back on our daily walks to the hospital and our nightly rides home in Uber. I remember all too well the hours and days spent by his side in the hospital room letting him know I’m here and I’m so proud of him. I wanted to be there for him every step of the way and wanted him to know he wasn’t in this fight alone. And although most mothers get a very different experience with their children, I didn’t have the option to be a traditional mother where I got to hold him, feed him, and rock him. I instead had to find beauty in being able to hold his little fingers that weren’t bandaged up, brushed the ultrasound gel out of his hair in an attempt to “give him a bath”, kiss his forehead a thousand times a day, whisper in his ear motivation and love sayings, and stroke his little legs and feet. And although that was difficult to be okay with the fact that I didn’t get to mother Palmer in the traditional sense, I am so thankful that I even had the opportunity to be a mother to Palmer and I got to hold his hand and brush his hair.

And now Palmer claimed his wings May 17th, his 47th day of life, and it is very heartbreaking to lose my little boy, but I know it does me no good to let my sorrow get the best of me, so I instead look for the light through the adversity. Through this fight we have learned to stand strong with the Lord and trusting his protection and love. I still find beauty and joy in having the opportunity to be Palmer’s mother and find it necessary to continue to mother him in a very non-traditional sense to keep him alive in our hearts. I want to make Palmer proud because he made us so proud in his very short time on earth.

Robert’s Eulogy:

Surprisingly, these have been difficult words to find. I owe perfection to my son’s honor. I’ll give it a shot.

Palmer’s life has forever changed his parents’ lives, this I can say with 100% certainty. But as to how it will change the lives of others, this has only been answered in the immediate. Most of life’s problems are manufactured within our minds. As creatures of habit we as humans tend to latch on to the most pressing concerns of the few and adopt them as our own.

I’m still unsure as to why true hardship and disaster occur, at least in the manner Kristen and I have had to face over the previous months. If you are a person of faith, perhaps it is the argument for the presence of darkness in the world as a result of man’s sin. Darkness seeps into every aspect of our world, and we as the descendants of Adam and Eve must continue to suffer for the mistakes of a few. The reality is we all have a choice. We all choose what hardship is to us; and we all choose how to respond.

Do I still have anger within me? Yes! Do I want to shut this anger out completely? Not in the slightest. I know that anger is pain, and pain is love. Love and Pain fuel the world in which we live. True, unconditional love is very rare. We as people use the word love quite often. Some of us mean it, and some of us simply say it because we think it’s what we are supposed to say. There is often times a grey area with love; but there should never be a grey area when it comes to the love of your child.

Like many parents facing the struggles of having a fatally sick child, the not knowing, the loss, the pain, the excruciating love further exasperated by having to watch as your child is subjected to what most in the world would classify as torture, Kristen and I learned rather quickly about the difference of love and true unconditional love. There was no grey area. Everyday was pure torture. But just as Palmer’s tolerance grew for the drugs he received to manage his pain, our tolerance grew for the amount of torture we could handle. We grew used to looking at Palmer with the cannulas in him, with his chest open and the blood seeping out slowly. Our perspective on pain was transformed. We experienced a daily metamorphosis of the mind. With each new day and each new life or death decision, the pain we felt for Palmer and within ourselves hardened into the most intense form of love.

But with this new form of love also came a new form of pain and fear. Life, when lived on the edge, is often times a double-edged sword. We often live life cautiously. We limit what we feel, we attempt to smother our emotions, we avoid letting others into our minds and our souls because we are fearful of the pain that will inevitably occur. This was not an option with Palmer. The amount of love Kristen and I felt for Palmer, the instant we set eyes on him, meant there was nothing we wouldn’t do to keep him safe and keep him here with us. With every new day came a new, more intense level of love, and yet, with every new day we also faced a more real life realization of how truly dire the situation was. We were told with regularity of just how grave Palmer’s prognosis was, and just how unlikely it was going to be that he was going to survive. Hope was all we had. This hope was born out of love for our son and the love and support of family, friends, and complete strangers.

I’ve never had a greater muse than my Palmey Bear. I’ve never had a greater Why, a truer reason to live, and an inextinguishable fire burning in my soul. No matter what I do, from this day forth, I do it to make Palmer proud. I’m a better husband to make Palmer proud. I’m a better father to make Palmer proud. I’m a better friend to make Palmer proud. I’m a better business partner to make Palmer proud. I’m a better person to make Palmer proud. I choose to live life because Palmer wasn’t truly given the chance. Palmer is my inspiration. He is my heartbeat. I am Strong by name, but I am Heart Strong because of my baby boy.

I owe my life to Palmer. He’s unlocked something in me that I never knew existed. He introduced me to true unconditional love, hope, and faith. He gave me the ultimate perspective. I’m born anew in his image. We will never get to see him walk for the first time, hear his first words, or hear him laugh. We will never touch or kiss him again, but we feel him always, and he will NEVER be gone. His soul lives on, within us, within our actions and our words. To give in, to give up, and to quit would be to give up on Palmer. I promised I would never quit on my baby boy. I stared at him and whispered in his ear, “Daddy is so proud of you. You are so tough. You’ve taught daddy so much baby boy. Just keep on fighting. If you fight, daddy will fight ten times as hard. I love you baby boy, to the moon and back.” I said this and so much more in the 47 days Palmer fought for survival. And now, although gone, I can hear him speaking to me, “Daddy, I’m so proud of you. You are so tough. You’ve taught me so much daddy. Just keep on fighting. If you fight, I’ll fight ten times as hard. I love you to the moon and back.”

Palmer is Heart Strong! Heart Strong is Palmer! Heart Strong honors Palmer and all children battling against CHD and Heterotaxy Syndrome. I still have so much to learn, and with the help of many, because it is impossible to enact change alone, I plan to grow the awareness, grow the research, and simply help families that haven’t yet gone through this roller coaster ride understand what their options are. I want to help these families understand the true gravity of the situation before the Dr.’s have to inform them of this and it is then too late. Palmer may have lost the battle, but he has not lost the war, not if I have anything to say about it. But I need your help. I need Palmer’s Army.

When I was very young I wrote a poem. My father found this poem and sent it to me when Kristen and I were in the middle of this battle, alongside Palmer. I must have been 8-9 years old when I wrote it. Somewhere amidst the mire and muck of life I had lost the hope and the childlike nature and understanding of what IT is all about. But it was always within me, I just didn’t know. But one look at Palmer, one touch of his hand on mine, and one look into his eyes, helped me realize what life is truly meant to be. This poem is called Father of the Future, written by a much, much younger Palmey Bear’s daddy.

When Daddy was A little boy, He said he wished to be, The Father of A little boy

A little boy like me! So, here I am! And now I exist, Someday when I grow tall

I, too, shall have A little boy, With whom I can play ball. I’ll take him to

The zoo, where I Shall buy him a balloon, And when I am A spaceman, we

Shall both go to the moon!

Love,

Bobby

Palmey Bear, Daddy is so so very proud of you. Daddy definitely thinks you look more like him, but if he had to venture a guess, he would have to agree, when you grew taller you’d look like both mommy and daddy. We can’t wait to see you again, to see how you have grown, but this time we are going to meet Way Way past the moon. Beyond the stars in the night sky, and beyond the galaxy, we will meet you in our forever place, just you, me, and mommy! We will have a lot of catching up to do and look forward to hearing all of your stories. We hope you will be proud of us, as proud as we are of you, this isn’t goodbye baby boy, it’s just see you on the flip side, on the other side of the moon.

The Beginning!!!!

Must we suffer the slings and arrows of outrageous fortune?

It’s Sunday, May 28th, and I sit on my couch listening to music thinking about Palmer. I took screenshots last week of my favorite video of my baby boy. The life, the energy in his eyes is blinding. Some days this energy makes me smile, and others it makes me crumble. Today his light blinds my soul. I’ve cried very little over the past 11 days. I find myself wanting to cry right now, so I turned to writing my feelings.

The screenshots of this video showed more than I could have ever seen just watching. I had thought we had never seen him smile, but I know now this wasn’t true. Oh no, here come the water works. It’s hard to explain the feelings going through me. I’m so afraid of losing these feelings. I’m so afraid I’m not going to be able to honor him in the way I want to, and that I won’t be able to keep his spirit alive. I don’t want to be the person I was before. I want to be more, I want to be better, I want to be Palmer’s daddy. I want to make a difference, to help those that are going through what Kristen and I are going through. I want to help those that are feeling helpless after just finding out about their baby being diagnosed with Heterotaxy and/or CHD. I’m not trained. I don’t have a degree in this, unless the University of Hard Knocks counts.

But I know that I have something inside of me that needs to be let out. It’s as if my soul was incomplete before Palmer. He opened my eyes, made me ignorant no more, yet, I’m still grieving, still struggling to understand, and still trying to find my way in a world that makes very little sense right now. I see so much waste, so much uselessness in action, so much naivety, and although I know this is a natural progression of life, I ask myself, “Why does it have to be?” Can someone truly learn without first having to suffer the slings and arrows of outrageous fortune? Or are we all destined to suffer great misfortune before we are granted the ability to see?

I’m angry right now and I don’t want to be. I know that this anger won’t honor Palmer, and this is truly all I want to do. It is said that once you become a parent, your life is no longer yours. You live for your child. The selfishness that exists in all of us is supposed to give way to teaching your children how to not only live, but to thrive and to be a positive force for others. Somewhere along the way most of us lose this. I’m not sure we ever had it in the first place. We succumb to the ease of doing for ourselves rather than for others. To be a parent means you have to pay it forward to the world. You’ve chosen to bring life into this world; it is your responsibility to ensure that this life’s impact surpasses that of yours. By choosing to have Palmer, Kristen and I chose to accept this challenge. And although he is no longer on this Earth, the moment we laid eyes on him and kissed him gently, we accepted all of the responsibility of being a parent.

I promised Palmer I would always be there for him. I signed up to be a parent for as long as I live. This is what I want. This is what I need. The rolls have been reversed. Here I thought I would be the teacher, but instead I am the student, eager to learn and apply my newfound perspective. But I am still lost. I know what I want to do; I just don’t know how to do it, or even what this truly entails. My soul is my son, and I’ll continue to push forward knowing that every step I take, he takes with me!

Do you believe in Miracles?

Our miracle was born April 1st, 2017 at 2:03pm. Our miracle left this Earth May 17th, 2017 at 4:49pm. Palmer passed peacefully in his mommy and daddy’s arms. His fight was Strong and truly honorable. Palmer is and forever will be a truly exceptional young man. It is impossible to fully express what Palmer means to Kristen and I. There is so much I want to say and so much that needs to be said. Palmer is my picture of perfection personified. No matter how broken his body, his mind and soul are perfect.

The decision to let Palmer pass was the most painful experience I have had to face in my life to date. His 47 days of life, although excruciatingly difficult, were also the most beautiful days I have ever lived. The moment I saw my baby boy, I immediately knew my life would never be the same.   Palmer taught me the true meaning of unconditional love. It was not wrapped in ribbons and bows, but instead laced with devastatingly torturous days of unimaginable fear and worry.

Palmer elicited emotions in me that I never knew existed, and could have never imagined feeling. Our instantaneous bond grew stronger with everyday we fought together. I would always whisper in my baby boy’s ear, “Daddy will never give up on you. If you continue to fight, daddy will fight ten times as hard. Daddy has always got you and daddy is so proud of you.” I have to cry when I write these words. Palmer is my soul. He is made of Kristen and me and there is nothing that can ever take this away. But Palmer was different, and far beyond the obvious nature of his CHD and Heterotaxy. Palmer shouldn’t have lived 47 days, not with the circumstances he faced, both from his condition and the resulting issues we faced, immediately after birth and before being medivaced to TCH.

The word fighter doesn’t do my son justice. The Dr.’s, Nurses, and Specialists were truly amazed at how long Palmer was able to fight considering the devastating nature of his conditions, combined with the complications that occurred during his surgery. Since day one at TCH, we were told that our son’s chance of survival was very low. We don’t allow such thoughts to penetrate our mind and way of thinking. The most difficult part of all of this is not that we lost Palmer, but that Kristen and I were not able to do all of the things we wanted to do with him. We may not have been able to hug Palmer, or see him walk for the first time, or teach him to ride a bike (and kiss his knee after he falls and scrapes it), but through awareness, we look to keep Palmer’s fighting spirit alive and well.

Mistakes were made. This is truth. These mistakes were made on our part as parents, as well as by the hospitals that took care of Palmer. Admitting this is not bad. Kristen and I will not forever blame ourselves or someone else for our son’s misfortune. Admitting this allows us the strength to fight. It gives us purpose. We were chosen for this, and to do nothing would be a mistake that we could never live with. Without the truth, the chains of our minds will keep us bound in a place of doubt and fear.   People must know. People will know. Palmer will live in the hearts and the minds of many. His story will be one of tragedy and triumph. The tragedy has already been written. The triumph will rise up out of tragedy; the truth shall set you free!

My Understanding; My Purpose

 

Love is Pain! Pain is Love! Inextricably intertwined, these two emotions are the innate essence of what it means to be human. Pain is both an emotion and a literal response to stimulus, either from inside the body or the outside world acting on the body. Love is a feeling, an emotion that is expressed with words and actions, but I had always thought of love as a metaphysical creation of the human response to the world. All of this changed when I first laid eyes on Palmer. Love became true pain, an unconditional and eternal intersecting of these two emotions. Love was no longer metaphysical, it was real, tangible. I could taste it, breathe it in, and touch it. Love was Palmer, and Palmer was love.

Understanding became irrelevant. Palmer is the air I breathe, and as natural as breathing is, so too is loving and protecting Palmer. Palmer’s fight was derived from an innate strength given to him in his mother’s womb. Unconditional love for my son, as I peered into his soul by way of his overt stares into mine, was the fuel that ignited my fight for him. But why does such pain and hardship exist?

I have asked this question to the Lord too many times to count. I do not believe this question can be answered fully, but through our journey I have come to certain conclusions that allow me to rise each day. Because pain is love, and love is pain, it is impossible to have true love without true pain. Furthermore, pain is not the creation of the Lord; it is a byproduct of actions we as humans choose to take each day. Pain is our response to the hardships that occur naturally in the world. Theologians will point to the Garden of Eden and the creation of sin as the reason for the existence of hardship and pain. I will leave this argument to those holier than thou.

No matter the reason for hardship to exist, it is reality. My reality is the pain and suffering of losing my one and only child, my son, my light, my legacy. My recognizing that pain is love allows me to understand that pain caused by hardship can only be defeated by love. Hardship is not the absence of love, it is the denial of love. It is impossible to deny my love for Palmer. Hardship will not defeat my love for Palmer. My love for Palmer, and the overwhelming urge to honor my son’s life means I must never succumb to hardship’s cruel intentions. If I were to falter and allow hardship to destroy all that I have become, I would fail to honor my son. This is my one true purpose. Through the strength of the Lord, family, and friends, and an unconditional love for which the flame can never be extinguished, I rise each day to honor Palmer.

Fattening the Pig For Slaughter; not on my watch!

(Note: These are old pictures from Austin)

It was a whirlwind weekend with a lot of frustrations and emotions. I’ll never apologize for fighting for my baby boy. But evidently the hospital thought I might literally fight, so that explained the heightened security on the unit, literally! 🙂 I think Palmer will get a kick out of that. Daddy sure did.

We have been in three meetings today. The first was with family advocacy, social work, the family director of the unit, and a cop for good measure! By the end we had reached a good place and I am hoping our points were heard. It doesn’t mean that the policies and procedures are going to change, but it does mean that everyone is more aware of what is going on and we should hopefully be able to focus on Palmer and ensuring he is getting 24/7 care, at a 100% level.

The second meeting was with the Dr.’s and Surgeon. I got philosophical because, well, that is what I do, especially in this setting. The prognosis is very dire and we are still fighting an extreme uphill battle, but we are hopefully now on the same page with regards to how we feel about the approach that needs to be taken and our attitude towards doing whatever is necessary to give Palmer the best chance of survival, and in the end, potentially the only chance for survival. I explained that we were burned very badly in Austin, and naturally I have trust issues as a result, and when things happen as they did this weekend, it further exacerbates my trust issues. I continued to say that when we continually have the fear of god struck into us, the team here cannot expect us to sit idly by when issues are not being attended to, or we are being ignored, or flat out disrespected.

From this meeting we ultimately agreed that we would seek out all possibly solutions to the riddle that is our Palmey Bear. We spoke with one of the Dr.’s by himself, and we discussed the reality of what the possibilities were. He explained that in his professional opinion, the indications are that Palmer has a severe lung disease that is not treatable. I indicated that without empirical evidence to prove this, we would continue to support the theory that Palmer simply has an infection that needs to be treated with a different course of medication.

Our third meeting was with Immunology. This meeting was in regards to the IVIG treatment that I have been chasing down since Saturday morning. Although the labs came back in favor of not treating with IVIG, there is just something about what I heard on the phone when talking with the Dr. in Memphis that stuck with me. He used the word “innate” when referring to a lung infection that often happens in babies with single ventricle CHD.

The fact is, Palmer has the gamut of defects, and it is too simple to on one hand say that very little is known about Heterotaxy and the combination of defects he has, but then expect Palmer to fall within the normal category as far as how his body reacts to infection. Palmer’s body may need more support from infection than what is typically indicated, and without evidence indicating otherwise, they’ll have to lock me out of the hospital before they simply let him succumb to this condition out of a fear of not knowing. But we have been assured that the team here is willing to do what most hospitals won’t. I think we’re about to find out.

The truth is, there really seems to be only two options in my opinion, based off of what we have seen for the past 28 days, and learned while talking with the Dr.s and Nurses. Either Palmer has irreversible lung disease as a result of improper blood flow in utero, and after birth, or he has an infection that is innate to him as a result of his condition and the trauma he endured during Kristen’s pregnancy, the nine days before he was operated on, and the 21-hour surgery and lengthy time he was on bypass.

It is my gut feeling that Palmer has an infection that is not bacterial in nature, but potentially viral, showing itself in a different manner than what the Dr.’s are used to seeing. Although his IgA levels were high, Immunology knows very little about why this occurs. They use the IgG and IgM levels as indicators, but then what is the reason for the IgA? They could not explain this. From my studies, high IgA levels can be an indicator of many things, but more important to Palmer’s case, they can indicate chronic inflammation and a respiratory tract infection.   We know for sure that Palmer has chronic inflammation within the upper airways of the lungs, as this is supported by a bronchoscopy done two weeks ago. Furthermore, Palmer’s lungs have been unable to recruit by simply resting, and have been unable to accept differing types of treatments and higher pressures on the ventilator. His alveolar will not open because they are more than likely filled with fluid and mucus, and it is my hope that by pushing the Dr.’s to look at and consider all options, as well as talk to different Dr.’s at different hospitals, they will ultimately stumble across a new method of treatment that was never considered.

The fact that Palmer is now on day 28 of VA ECMO, open chest, leaves the Dr.’s with no other conclusion than he will not get better. Our surgeon indicated that it is a miracle that Palmer has made it this long, and that this was a testament to the team of Dr.’s, Nurses, and Surgeons. I agreed that the team here at TCH has done a great job of maintaining ECMO and Palmer, but while this is an indicator to them that Palmer will not make it, it is an indicator to me that he has a chance. Our baby boy is unique, and Palmer’s Army is strong; Heart Strong!

Because the ECMO has managed to keep him alive thus far, I am grateful.  But as quickly as it can giveth, it can also taketh away.  Relying solely on ECMO and the treatments already provided to try to recruit Palmer’s lungs is tantamount to fattening the pig to eventually lead him to slaughter, especially when the Dr.’s admit they don’t truly know what is going on, and only suspect it is lung disease.  Palmer’s set of CHD conditions, combined with Heterotaxy, and the damage this ultimately caused to the lungs, present a very unique case to the team here at TCH. Of course we wish that Palmer had a more “treatable” CHD condition, but these are the cards we were dealt, and one way or another, Palmer is going to teach everyone here a lesson or two. We’re hoping it is a lesson of survival against all odds! We fight for that, and evidently we scare Dr.’s for that too!