365 Days in the ICU

I don't often share the details of our journey unless I think they might help someone else. Mostly, it's because there is a lot to recount, a lot to digest, too much reality for some, or just too personal.

Sometimes, it can be healing to share.

A year ago, today was one of the worst days of our journey. I decided to write it down so, on the difficult days, I can be reminded of how far God has brought us.

On the evening of November 30th, 2022, I was leaving Cohen's room to do a child swap with Todd. She needed to get to gymnastics practice, and he was waiting in the car. To my surprise, Cohen's primary doctor and both primary surgeons were sitting outside his room. It was apparent that the conversation was not going to be quick or pleasant, so I sent my daughter back into the room to wait. Cohen had several immediate issues: his inflamed appendix needed to be removed, he had a fungal infection from his central line that required the line to be replaced, and his pancreas was filled with sludge and stones. Furthermore, they wanted to perform all of these procedures in the morning. There are so many details that need to fall into place when Cohen goes to the OR that there has been an unwritten policy to avoid "add-on" trips at all costs. None of us felt great about deciding this at five in the evening, but everyone agreed that it needed to be done.

Cohen was already experiencing breathing issues, requiring 2 liters of oxygen and trialing bipap at night. On the morning of December 1st, I had a sinking feeling in the pit of my stomach, a feeling some refer to as "mama's intuition." I felt the need to take lots of pictures and videos while holding onto his hand. The morning seemed to drag on forever as we anxiously waited to hear when they were ready for him.

We were so excited to discover that we had one of our favorite anesthesiologists. During our huddle, I shared that things were a bit different, and Cohen now required supplemental oxygen. After the preop time out, Cohen and I did our final prayers, hugs, and goodbyes. Not knowing that hours later I would replay those moments over and over again in my mind, desperatly trying to relive every second while begging God for the opportunity for more. 

The girls and my mother-in-law came to wait with me that day. We were up in his room, and I was busy with my usual nervous tasks when my phone rang. I had only left him thirty minutes ago for what was scheduled to be a lengthy procedure. When I saw the name on the caller ID, my heart sank. It was our primary surgeon. "Carrie, where are you?" The memory still echoes in my mind. He told me to wait there and said that he was coming to see me. You don't have to have ever had someone you love in surgery to know that whatever he was coming to tell was not going to be good. I paced the halls of our unit, waiting for what felt like an eternity. Word quickly spread that I had received a call, and our primary nurse practitioner met me in the hallway.

Minutes later, our surgeon and anesthesiologist appeared from around the corner. I remember thinking, "Why are both of you here... Who is with Cohen?" My brain wouldn't allow my heart to piece together the details. Suddenly, as if she had appeared out of thin air, our primary doctor, Stella, stood beside me and directed us to an unoccupied patient room. I don't know when others joined us, but I remember scanning the room and suddenly seeing it filled with nurses, child life specialists, and attendings. I don't know how to explain it, but it feels like all my nerves are exposed, allowing me to perceive and experience words and sounds as they surround me. Someone suggested calling Todd. Stella reached for the phone, recognizing that my hands were too shaky.

"Cohen immediately got into trouble when we brought him back into the OR, and we had to call for help." They went on to tell us that they struggled for a while trying to re-establish his airway, but they were finally able to place a breathing tube with the help of the Critical Airway team. At that point, he was too critical to undergo the surgery and needed to be transferred to the ICU to be reevaluated before the possibility of surgery could be reconsidered. We have always asked them to be honest and transparent with us, and this was not the moment to sugarcoat anything. They went on to say that it was an incredibly dangerous situation, and they were extremely concerned that if the tube accidentally came out, they would not be able to reinsert another one. The tube was very fragile due to his severe allergies, so they could only use ties instead of tape to keep it secure.

All I wanted to do was to see Cohen and hold him, but they needed to stabilize him in the OR before it would be safe to transfer him. Our team wanted to get back to him so they could provide us with a better update. Stella went to talk to the girls because I was too upset to return to the room and see them. I didn't want them to witness me so upset. She shared a portion of the news with them, delivering it in her remarkably gentle manner. After taking care of me and the girls, she informed me that she was going to check on Cohen and promised to update me soon.

Waiting again to be told that I could be with him felt like torture. Our NP decided to take me down to the ICU and find his room ourselves. We went to the wrong wing, and when she asked the HUC where his room was, she informed us there was a code in the OR and didn't have any other information. Her words felt like a thousand blades, cutting me open. About that time, our NP's phone rang. It was Stella asking her where she was and that she needed her. As she rushed off to find her I suddenly found myself alone in the waiting area, experiencing a type of fear that I had never known before. Waiting once again for any sign that my sweet little boy was alright. After about twenty minutes, I texted Stella that I was scared and needed to know if he was okay. A minute after minute went by with no response, and my mind began to let my heart in on the details that were now enveloping me like a tsunami. Frantically, I called Todd, barely able to form words through my sobs. "I am so afraid he is gone!" Is all I could repeat. He turned his concern to me and tried to calm me down while he navigated through traffic.

Still alone in the waiting room, thirty minutes passed as I endured the anguish of believing that we had lost him. Finally, our primary child life specialist, who had been called to come to me, came around the corner waving her hands. Knowing that the sight of her presence would immediately provoke more fear, she attempted to signal that she wasn't there for "that" reason. Although she didn't know his exact condition, she was aware that he was still alive and that efforts were being made to transfer his care to the ICU team. However, it was a challenging task. She sat with me as I began to settle. We even managed to find some peace in looking at his silly videos, laughing and crying together.

Soon, members of his team began trickling out to me, Stella, and our NP, and then Todd arrived. 

Our incredible anesthesiologist even joined us in our decompression circle. Everyone sat on the couches, which I now pass daily, feeling drained and trying to process the events of the day. We discussed what had happened and contemplated our next steps. Our anesthesiologist probably felt the weight of it all the most. I could see it in his face and hear it in his voice. He was upset, revealing to me that during the code he had feared that we were going to lose him. He shared with me that he kept talking to "his buddy," reassuring him that he could do this because he was the strongest little boy he knew. It was apparent how much Cohen had impacted the lives of these individuals over the years and how deeply they cared about him.

Once reunited with Cohen, I immediately slipped into my role of overseeing the important details of his care. I had no way of knowing that in just a few days, another day would rival our worst nightmare ever, when he would code for a second time. Maybe one day, I will feel up to sharing the details of those difficult weeks that silently unfolded into a year.

Perspective was the greatest lesson I learned throughout this year. In the weeks leading up to November 30, 2022, I had been pleading with our care team to allow us to go home for Christmas. But on December 1, 2022, I was just grateful that Cohen was alive and that our family had the opportunity to celebrate another Christmas together... I no longer cared where we spent it!!!

So, the answer to the age-old question, "How do you keep doing this, Carrie?" is because I came too close to not having the opportunity to do it anymore.

Because he continues to do it, therefore I can too.
Because not doing it means not having him.
Because I know others who would sacrifice their own lives to continue doing it for their child.
Because he is worth it!!!

Cohen's name means "priest; giver of God's word." We didn't realize the meaning when we gave him that name, but God knew. His middle name, Isaac, means "one who laughs and rejoices." And though I have never been one to care much about the meanings of names, I believe that these names must have been divinely chosen for him. When Cohen was born, a dear friend told me his name was a good and strong one. I had never thought of it that way, but I couldn't agree more. Every day, he proves that he is more than worthy of them.

Please. Do not feel bad for us because we have spent 365 days in the ICU out of our 495-day admission. Instead, be grateful with us that this child has the opportunity and determination to continue fighting. Most importantly, he has the potential to make a difference in the world while doing so.

Please Forgive My Anger

A lot of parents caring for sick or special needs children often wear a smile, but sometimes those smiles are hiding something from you.

This is hard and we get angry!

Not at anyone specific (usually) but at what our children endure daily and our inability to take it away. Our journeys may differ slightly but our anger comes from a common place, our children live a life filled with struggles and it's too much to bare at times. So we often silently struggle with our anger and hurt.

The truth is, at times, I need to be allowed to just be angry.

I'm angry because my child never gets to taste anything... nothing. He watches the world eat snacks, meals, and even slurp down tasty drinks. While everyone else chooses which flavor to pick, he is forced to choose between quenching his thirst or drinking a few sips of water and suffer so much that he needs pain medicine. 

I'm angry that every meal reminds me that there is a plate that I will never get to fix. And when our family gathers around the table he feels the isolation of his reality. 

I'm angry because at any moment I could be plucked right out of any resemblance of "normal" life, spending weeks in a hospital. Missing out on the routines of "normal" life has a way of making you feel invisible to the rest of the world. I am forced to miss out on the gift of being able to care for the needs of ALL of my children.

I'm angry because my child lives for weeks and weeks in hospitals. He suffers through painful procedures, frequently requiring him to be held down while he screams for help.

I'm angry  because he can't be around a lot people for fear of germs. His immune system kicks into overdrive when an illness enters his body. And because he has a central line (permanent IV) he is at extreme risk for infection and sepsis, so he is hospitalized for days with a fever of 100.4 degrees.

I'm angry because some of the best doctors in the country tell us that our child's illness is most likely so uniquely rare that we shouldn't expect a cure at this point. How does a mother digest those words? Our child is perfect to us and he deserves a perfect outcome.

I'm angry because daily life can be difficult at times and the possibility of him ever getting to do normal kid activities diminishes everyday. He is supposed to be playing with kids his age and enjoying parties, not living in a bubble.

I'm angry because I have to watch so many of our friends, daily, struggle with every fiber of their beings to keep their children alive. I have seen the unimaginable brokenness that comes with burying a child. Children shouldn't suffer and parents shouldn't have to anguish over making critical life and death decisions for their little ones.

So please forgive me because at times I am angry, but I want you to know that there is always something that can overshadow that anger,

 Faith and Hope

I have faith that there is something bigger. There is a far better place where we walk free from pain, free from anguish, and free from anger.

My hope is in the promise of there being more to this journey than these things that make me angry. And by living faithfully in this season of struggles I am allowing God to create a greater purpose for my life.

I know that I must choose by faith to release my anger and receive peace in its place, so that I may continue to walk this path in grace. Peace allows me to take my eyes off of the hurt and focus on the joy of my children.

My faith gives me hope, without either I could not receive the peace I need to thrive in this journey.

"What Do You Mean He Can't Eat?"

Did you know that our Super Cohen has a very real Super Power....

He can live without eating food!

“What do you mean, he can’t eat?” people ask. Two years ago I would have had a similar response. That was before I knew people can survive without consuming food.

Cohen on a swing, wearing his superhero cape.

HPN Awareness Week is August 7–13, 2016. About 40,000 Americans,including my son, live on home parenteral Nutrition or TPN (total parenteral nutrition). Parenteral nutrition (PN) is the feeding of a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulae that contain nutrients such as glucose, salts, amino acids, lipids and added vitamins and dietary minerals. It is called total parenteral nutrition (TPN) or total nutrient admixture (TNA) when no significant nutrition is obtained by other routes.

Our journey with TPN began in March 2015, when attempts to feed Cohen through his GI system failed. Cohen’s doctor describes his condition as idiopathic intestinal failure, which simply means we have yet to figure out why his intestines don’t function like they should.

All of Cohen’s nutrition comes from this amazing source of life sustaining medication. In the past,patients on TPN would have had to remain hospitalized to receive this type of treatment, but now because of advancements in medical equipment, patients like Cohen can live at home.

TPN is made especially for each patient; it’s a “made to order” form of nutrition, extremely specific to each individual’s blood lab results. In order for Cohen to grow at an
appropriate rate, he must receive continuous nutrition through his veins (or as Cohen says, he eats through his heart) and his infusion lasts for 20 hours. Unfortunately, this only enables him to be disconnected from pumps and IV poles for a few hours each evening, but this is his time to be like other kids his age. Watching him run, jump and play with his friends and siblings is a gift I will never take for granted.

There is no doubt that TPN provides us with many blessings, allowing us to live outside of the hospital. However, TPN does not come without risks, and should not be considered unless all other options of nutrition have failed first.

One potentially devastating side effect is liver damage, which can occur from long term use. Because TPN is administered through an IV catheter, there is also a great risk of life-threatening infections. Last February Cohen developed a fungal infection which progressed to what his physicians described as an overactive immune response by his body. He went into acute liver failure and septic shock. It was a very scary time for us, but we are grateful that he is doing much better now.

Because of the danger of infection, we must be vigilant in the way we care for Cohen and his IV line. This requires us to do weekly sterile dressing changes at the catheter insertion site. He must also avoid contact sports and swimming, because the line must remain protected and dry to avoid bacteria growth.

TPN allows him to do things like mop the floors,
dressed as Buzz of course!

We live in a world where food is the center of much of our daily experiences, such as parties, movies, and other events. But for someone who can’t eat, it can be another reminder of how different they are from others. This week gives us a chance to share a glimpse of what life is like for those who can’t eat food. For a 3-year-old, it means no swimming, and limited time on the playground. It means no birthday cakes or treats like other kids his age.

TPN is not easy to deal with, but it allows Cohen to be part of life. Our family strives to enjoy the blessings and gifts each day has to offer.

My hope is that by answering questions about TPN, we can build a pathway to education and understanding, breeding compassion and inclusion.

This is a very special week for us. It is our chance to remind the world that we are all beautifully different.

Visit the Oley Foundation for more information about living on HPN or enteral feeds.

HPN Awareness Week! 

August 7–13, 2016 

Please check out our friends at the Oley Foundation for more information about living on HPN or Enteral Feeds.

The Undiagnosed: Cohen's Update

Timehop can be a wonderful thing... most of the time. I often find so much joy in looking over past pictures and memories... but every once in a while one stops me in my tracks and I find myself face to face with reminders of the difficult times in our journey.  

Today was one of those days...

When I read over the post from two years ago I was filled with so much emotion. 

Johns Hopkins: A Match Made in Heaven

I was in awe over how eerily correct some of Dr. Wood's predictions were (I had forgotten about most of them), but I also felt equally mad about the ones that did not come true... the ones I hung my hopes on.  


As much as I hate to admit it, there have been many times along this path when the wind has been sucked out of our sails.

This past entry reminded me of the hope that I had put into those steps of the journey, only to be left with the crushing feeling of our new reality. Johns Hopkins and the great Dr. Wood were simply one of many stepping stones on our way to healing, but even in knowing that, the sting still lingers. 


However, I am glad that I didn't know what the past two years would hold for Cohen; I'm afraid I would have focused on the fears and struggles and missed out on the joys that were hidden in between. 

Now we are at a new place yet again.... and I can't help but feel very disconnected from our old world of FPIES, a world that two years ago I clung to. Sadly, because of where we are in this journey I feel that I can no longer identify with the majority of that community. 

I realized some time ago that our story is not a typical progression for most kiddos with FPIES and our presences in that world only creates fear for those that are dealing with ONLY that condition... unlike us.

It was also very difficult to watch the world that was suppose to be ours, pass us by. We were suppose to progress like others and outgrow this like others... but our time never came. And instead we began to take steps backwards and in directions I never new existed. It pains me to admit that I had begun to grow a little bitter. Soon it became painfully obvious that we were dealing with more than the diagnosis we had been originally given.

So at this point I don't know where we fit in and to be honest it's a struggle some days to keep from feeling isolated and alone. 

Being medically fragile, with an unknown diagnosis, is like living between worlds. We don't have the support of any group or the comfort and camaraderie that comes along with diagnosable illness communities. 

And our tubes and lines make it blatantly obvious to the "well" world that we are not one them either.

We often stand alone, left to simply wonder about prognosis and question every decision we make because we have no literature to guide us, or support group to validate us. 

Our recent trip to Cincinnati left us with yet again more questions than answers. 

Because Cohen's constellation of symptoms don't fit into any, one single, diagnosis we are left crossing over into many areas of grey. One of our lead doctors believes that we are dealing with something so rare that it has yet to be identified. Another thinks that what we could be seeing is an inflammatory response to EVERYTHING that enters his little body. At this point we are left with only theories and not concrete conclusions.

The painful truth is Cohen's doctors just don't know why he is the way he is... 


So we wait..... for more test results, some of which may take up to a year to get back and with that there are still no guarantees for a diagnosis. 

Life in the undiagnosed world is difficult and scary. We don't know the real monster we are fighting and because of that, this battle is unfair; leaving us with only Whats? and Whys?

But that doesn't change our stance on Hope nor will our faith be shaken. Once again will be still and quietly wait for His guidance and be grateful for the doctors that God has put in our path. 

This past week one of our physicians told me words that helped heal my heart just a little, he said... "I can't even imagine how difficult and frustrating this is for you as parents. I wish I could give you better answers right now. But I want you to know I will not give up, I promise."

We believed then.... We believe now and We will forever continue to BELIEVE!

What do you Hope for?

Have you ever had a hard time trying to determine which way was UP or DoWn... or <--- left and right--->? If you have ever felt lost in the DARK, trying to blindly feel your way out, you may understand where I'm coming from.

I have learned the hard way that every question doesn't necessarily have an answer. And that there are more colors than just  black and white.

In a world were your child's illness presents more questions than answers you  no longer know what exactly to hope for anymore.

When you're the parent of an undiagnosed child you may find yourself feeling as though someone handed you a menu of possible illness  and said,

"Please review the list of diagnosis and choose one to your liking." 

After quickly noticing a less aggressive, easily treatable one, you eagerly make your decision, only to find out there are no guarantees that you will get what you selected.

And so you find yourself fearfully waiting for an answer and questioning...

"How long will it take for them to return with a verdict and which one will it be?" 

Perhaps they will never return at all and you will be left wondering, 

"Where do we go from here?"

 What do you hope for when you live in the topsy turvy world where testing that comes back negative is not necessarily good news AND extreme measures of treatments that WORK are bad signs of prognosis?

What do you hope for when your child's constellation of symptoms don't fit into any one category, leaving doctors no choice but to run tests after tests?  In the end you are only left with more inconclusive information and uncertainty about your child's health and future.


What do you hope for when there are no good choices to hope for? It's simple...


You hope for another chance at today.

You hope for days without pain or hospital stays.

You hope for another opportunity to laugh louder, hug longer, and love deeper.

You hope for moments filled with lots of smiles and amazing memories.

You hope for wisdom to make the best decisions for your child, with no regrets.

You hope for answers and the strength to handle them when they finally come, no matter what they may be.


You hope that no one else has to feel this way and that someday children will never have to endure such things. And you pray that pain from your story will somehow have purpose, helping someone else that feels the sting of this kind of journey.

But above all else... you simply keep hoping, because without HOPE you have nothing!

The Lie

As I sit here once again amid alarming machines and sterile walls I am compelled to tell the truth.... And the truth is I feel as though I am living a lie. Not one that I have told but one that is being imposed upon me by the well intention of others.

I am in a constant struggle with the fact the people think that I am something that I am most definitely NOT!

 "You are so strong." 

.... words spoken by kind hearts with the genuine purpose of supporting and encouraging me, but the truth is the more I hear them the more I feel as though I am living in a lie. 

So I want to set things straight and let everyone know...

My God is STRONG.

My child is STRONG.

But I am not strong, not at all, not even close. 

What I do has nothing to do with strength. 

I don't get out of bed in the morning because I have strength... but because I know someone is depending on me for their every need. 

I don't face appointments, procedures, or diagnoses with strength... I show up because my child's life depends on it.

On long hard days or when difficult news comes... strength is the last thing I am feeling.

Frequently, we are faced with hard decisions regarding our child's treatment plan, often given no real choices... forcing us to decided between paths of lesser evils. These are moments when my weaknesses are revealed and I am sustained only by the strength of my faith.

There are times when testing leaves us with no ideal outcomes to hope for... only new sets of fears and uncertainties.

I do all of this not because I have strength... but because I still have AIR left in my lungs. 

If what I did each day depended on strength I would fall short daily... there just isn't that much strength this side of heaven.

So please don't confuse what you are seeing as strength, the truth is what you are really witnessing is the depths of a parent's LOVE for their child.

There is place in our hearts that we are suddenly aware of the moment we first hold our child.

An extraordinary love is formed in the deep reservoirs of our hearts and is awakened within us the moment we learn of their illness.

I don't know where our journey will take us but as long as I have breath in me I will fight for my child.

And thankfully that doesn't take strength, just LOVE, for which there is certainly no shortage.

Water on Our Wood

Lately, we've kind of had a string of not-so-great news. To be honest, I started feeling a little defeated as Todd and I spoke about the results of Cohen's biopsies from his lung bronchoscopy. And then somewhere in our conversation my wonderful husband reminded me of an amazing and frequently overlooked Bible story.

His words fell over me like a blanket of comfort, lifting my spirits and changing my perspective.

Todd said, "Remember the prophet Elijah? This is just more water on our wood, honey. Let them soak it so all the world will see just how remarkable our God is when he lights our fire; leaving no doubt as to who is responsible for our miracle."

Later in the day Cohen started running a fever. Because he has a central line he must be admitted and treated for a possible line infection. And now we must sit in the hospital for three days, waiting to see if his cultures grow bacteria... just more water on our wood. 

The prophet Elijah had a BIG job to do and he did it in a BIG way. He devotedly demonstrated the amazing faithfulness of our God, and so will we.

So go ahead and soak our wood 

if it will allow God's 

blazing fire to be undeniably recognized by all!!

1 Kings 18:20-39

20 So Ahab sent word throughout all Israel and assembled the prophets on Mount Carmel. 21 Elijah went before the people and said, “How long will you waver between two opinions? If the Lord is God, follow him; but if Baal is God, follow him.”

But the people said nothing.

22 Then Elijah said to them, “I am the only one of the Lord’s prophets left, but Baal has four hundred and fifty prophets. 23 Get two bulls for us. Let Baal’s prophets choose one for themselves, and let them cut it into pieces and put it on the wood but not set fire to it. I will prepare the other bull and put it on the wood but not set fire to it. 24 Then you call on the name of your god, and I will call on the name of the Lord. The god who answers by fire—he is God.” Then they called on the name of Baal from morning till noon. “Baal, answer us!” they shouted. But there was no response; no one answered. And they danced around the altar they had made.

27 At noon Elijah began to taunt them. “Shout louder!” he said. “Surely he is a god! Perhaps he is deep in thought, or busy, or traveling. Maybe he is sleeping and must be awakened.” 28 So they shouted louder and slashed themselves with swords and spears, as was their custom, until their blood flowed. 29 Midday passed, and they continued their frantic prophesying until the time for the evening sacrifice. But there was no response, no one answered, no one paid attention.

30 Then Elijah said to all the people, “Come here to me.” They came to him, and he repaired the altar of the Lord, which had been torn down. 31 Elijah took twelve stones, one for each of the tribes descended from Jacob, to whom the word of the Lord had come, saying, “Your name shall be Israel.” 32 With the stones he built an altar in the name of the Lord, and he dug a trench around it large enough to hold two seahs[a] of seed. 33 He arranged the wood, cut the bull into pieces and laid it on the wood. Then he said to them, “Fill four large jars with water and pour it on the offering and on the wood.”

34 “Do it again,” he said, and they did it again.

“Do it a third time,” he ordered, and they did it the third time. 35 The water ran down around the altar and even filled the trench.

36 At the time of sacrifice, the prophet Elijah stepped forward and prayed:

“Lord, the God of Abraham, Isaac and Israel, let it be known today that you are God in Israel and that I am your servant and have done all these things at your command. 37 Answer me, Lord, answer me, so these people will know that you, Lord, are God, and that you are turning their hearts back again.”

38 Then the fire of the Lord fell and burned up the sacrifice, the wood, the stones and the soil, and also licked up the water in the trench.

39 When all the people saw this, they fell prostrate and cried, “The Lord—he is God! The Lord—he is God!”