Milwaukee

I will never forget the drive down to Milwaukee from Minneapolis. A 5 hour drive that felt like 5 days. We were told by the life flight team caring for Henry in the air that they would do their best to update us, but the chances we hear from them in flight are low. We got initial word that they were loaded into the flight from the St Paul Private Airport, I remember my parents making the drive to see their only grandchild at that time fly out, they didn’t get to physically say goodbye to him but having to wave to him from afar as he took off in a life flight. Gut wrenching. 

My husband and I, I swear, drove so fast down highway 94, we told ourselves if we got pulled over we were going to ask for a police escort to Children's Wisconsin. Even if it was hour one of the drive. When we hit hour 2 of our drive we finally got an update from the flight team, landed in Waukesha Wisconsin. The tiny private airport just outside of Wauwatosa where the Children’s Hospital was. Henry made it, I could breathe. They safely loaded him into an ambulance, he was intubated, fully sedated, a 4 month old baby on his way to a children's hospital all alone with his parents hours behind him. 

Henry arrived at Children Wisconsin’s CVICU that evening with a team who swarmed him. So many new people had to get to know this tiny little baby from Minnesota with half a heart who was very sick. We received a phone call from the nurse that was admitting him asking all the initial questions and then how far out we were. Telling them we were only 2 hours away when we probably should have been further and his response being “he’s ok, we got him, slow down.” In that moment I knew John Paul would become such a pillar in Henry’s care in the months to come. 

My husband and I arrived hours later to a huge hospital, one so much larger than what we were used to. We were escorted from the lobby by security to the unit quickly and were brought to room W320, our new home. Standing there was Nurse John Paul, the man that told me over the phone that he had Henry and that he was ok. Even though Henry was not ok. The ongoing joke now that we have gotten past it is that Henry was the trojan horse. When he came to Children’s Wisconsin he looked like a perfectly sick HLHS baby in need of a heart transplant, straight forward case. What we didn’t know was what was below the surface. Henry was in septic shock, an infection that had spread so aggressively through his body that no one had noticed from the time we left Minnesota to Wisconsin. Years later our nurse in Minnesota says he took his temperature before he left and he noted it was high, and that cultures should have been drawn and figured out what was causing that fever when he was still in Minnesota. 

Regardless, Henry was now working against the clock with an infection that could very easily take his life. As if we hadn’t already been hit with enough blows. We just moved him to a new facility with hopes that this was going to save his life, not bring him here to die. The team let us know they had started him on a broad spectrum antibiotic until the test results came back for them to focus on what exact medication to use. They told us to go to our hotel to get settled, since we wouldn’t be getting into Ronald McDonald house for a few days until our referral went through.

The next day I vividly remember the vast difference in size of the hospital scared me, we got lost getting to the unit. After being at the U of M, it was a big hospital but the children's tower was small and there were only 12 beds on the CVICU, Milwaukee had 24 in theirs. The morning following our arrival was a lot, I remember the amount of people, specialists and counselors we met. In the middle of this, it was time for our first rounds with this team. In walked the Transplant team, 3 people that consisted of a doctor and two nurses. The doctor walked right up to my husband and I, shook our hand and even though we had been on the phone with him for many weeks, meeting him and his team for the first time actually made it real. Henry was in the process of being listed for transplant, this was the last shot we had. 

Listing for transplant is not a simple process, there are many rules, regulations, labs, scans and interviews and then a team that reviews all of this before a child is deemed to be listed. You heard that right, we were interviewed while Henry had to get his blood drawn, XRAY’s, a cath and more tests to ensure they had all the data they needed to input into UNOS for his future donor pool.

Part of the reason parents and families are interviewed is multi-layered. The team wants to make sure it is fully understood that the care a child has to receive after a transplant is many medications, appointments and follow up care for the rest of their life. There isn’t a time where they won’t need labs to check their medication level, or when they don’t have to be put under to check their donor heart for rejection and the health of it. On top of that, they want to understand what our support system looks like. This was to make sure that in hard times or when we need an extra hand are there people in our life that are going to step up and do that. Something about this really brought comfort to my husband and I, because knowing that they put this much care into the listing of a child has as much to do with the child and their heart and what they need, but also what their family support system is. A family that is capable of supporting each other and knows that this commitment to a transplant is one for life, is a family that is going to have a child thrive outside the hospital, and we as a family have always respected that mentality.

Henry was still very ill from a sepsis standpoint so on top of us trying to get him listed for transplant, this infection was holding us back. Until Henry was showing signs that he was recovering, he was going to be listed as status 7 on the transplant list; which means couldn’t receive a heart because he’s too sick but is accruing time. A dagger to us but we knew that once he was showing the correct signs that he would get bumped up to the highest status on the list. 

I remember his belly growing so big, he looked like he had eaten way too much. In reality this was not a good thing, his body was swelling and reacting to the infection. His belly wasn’t full of food, it was fluid. All signs are pointing towards not a good ending for us. The team was puzzled by this, how he had gotten this infection and what antibiotic was going to beat it.

By the time we had reached the week mark, they had found a concoction of antibiotics that were working. Not to mention all the other medication he was on for his failing heart. The towers in his room were everywhere, medication pump, one after another and then a ventilator on top of it. We had this recliner we could sit in and watch him, a small desk and a curtain that my husband used as his office. Those of you that worked with him during that time, probably remember those phone calls. Yellow walls with a small black TV in the background, that “office space” also doubled as a pullout couch that we could sleep on if we ever wanted a nap or stayed overnight.

My parents & my In laws who in the grand scheme of things hadn’t really spent that much time with Henry in his young life, due to COVID restrictions and how much he was in a hospital, had made the drive to be with us during the first few weeks of the Milwaukee transfer. They were actually allowed to be in his room and see him, holding his tiny little hand. Even though Henry was completely sedated and not engaged, having them there I still think to this day Henry knew that his family would always be by his side. 

Henry slowly started to make strides in the right direction, but not without many setbacks. There would be days that his infection numbers would be improving, and then he would spike a fever, restarting the clock on when he was considered “out of the woods.” As a heart parent, many of us can relate to this never ending cycle of highs and lows. 

One story that I have told recently is how we came about getting our ICU Attending Doctor. Every child had a doctor on the unit that was assigned to them as their doctor. Essentially giving consistency to the family and team, knowing that no matter who was on that week that his doctor was going to be included in every conversation and decision. Not to mention we were on the transplant team as well, so our oversight was a lot more than we were ever used to. Nonetheless, I remember the day Dr. George Hoffman came in, a quiet, smart, stoic anesthesiologist that was really hard to make laugh. His brain is one that I would love to live inside one day, just to see all the moving parts and how he can solve all these puzzles. We had just wrapped rounds and he had absolutely destroyed this resident doctor over them not knowing an answer to one of his questions about Henry and why he may be presenting the way he was. When Dr. Hoffman had turned to me when the resident couldn’t answer it and I could, he used it as a learning opportunity to show that “Parents of critically ill children are some of your best resources, they know their kids quirks and they know their kids illnesses, because it’s their life now, it's all they focus on.” 

Once everyone had left the room and moved on to the next, Hoffman stayed back. With his head down, minimal eye contact was his thing, he asked my husband and I point blank if he could be Henry’s primary doctor. Saying that he was so fascinated by his case, and how complex he was, he wanted to be the one that was making the calls and ensuring that Henry’s care was top tier. There was no hesitation with us, it was an immediate yes, and then gone with the wind he flew off to the next sick kid down the hall.

Our nurse sat there and said “he never asks to be a part of cases on the unit, he is so busy, that was a huge for you guys and for Henry.” At that moment I looked at John Paul and didn’t know if I was like “oh yay go us” or “like holy cow our kid has to be really sick.” I think looking back it was absolutely the ladder. 

After what felt like months, truly only weeks we were finally getting our routine again. We had gotten a room at Ronald McDonald House that was attached to the hospital by a bridge after a week of living out of a hotel. The first room we stayed in was the size of my freshman dorm, to say that it was by far the most humbling experience living in a group home, where you share your meals in a family kitchen, you can’t have food in your room and no liquid outside of water and breastmilk was a vast change of pace from us living in our home and going to the hospital to see Henry. It took some time for us to adjust and we knew we were going to get moved over to the long term side of the house, where there was larger rooms with space for family and guest to stay with you, private kitchens that gave you way more space to store your food and make you feel like you were actually living at home. But that didn’t come for 40 days, but when it did and we finally had space, it was so freeing. 

Once we had the larger room, my husband was able to work out of our Ronald Mcdonald room more. My routine every morning was the same. Something about the stability of that brought me a lot of comfort. I got up, most mornings would go across the street to the gym that we joined and workout, grab a coffee, shower and put my headphones in and make the walk to West 3 for the day. Most days I'd listen to music, or maybe a funny podcast just to get my mind out of the darker spots. Transplant listings are intense, you're in this cortisol spiking mindset that every time your phone rings it “could be the call.” 

So it began, the waiting. Everyday felt like a rollercoaster. Somedays there was a lot happening with Henry, which if I am being honest wasn’t what you wanted. You crave the quiet days, where he is able to do OT, PT and rest his tiny body. The first few weeks were many busy days, letting the new team get to know him, his quirks and how he handles medications and changes to them. Learning his blood pressure swings and how his sick heart handles its day to day. After a few weeks it was determined the safest option was for Henry to undergo another open heart surgery to place pacer wires. The reasoning being his heart was so sick that the rhythms it would get “stuck” in were dangerous and there was no other option than to let the team have full control. Think of it like a pace maker but one that sits on the outside of the body with a little box where the team can switch the knobs as they please when they see his heart rhythm not where they want it.  

A procedure we were told would take 1-2 hours at most, little did we know this would be the one that would totally change our babies life. After an hour, all things were going great and they were going to close Henry’s chest up, for us this was a weight that felt like it was lifting. My mind “he did it again, made it through #4.” But as soon as that thought entered my mind, the alarm that every medical mom knows, code blue OR went off. Everyone went running, the team that was working on Henry, we watched sprint through the swinging doors, on their way to save him. 

Dr Hoffman was Henry’s Anesthesiologist that day. He said that when they went to close Henry’s chest, he noticed on the monitors that something wasn’t right. Things were starting to drop and this is when he hit the button and started to perform manual CPR. Henry was placed on ECMO and what was a 2 hour straight forward day, turned into 16 hours of life saving measures to stop the bleeding that was coming from Henry’s chest. This was the day I knew I would never forget. Dr. Raskin came in, one of the transplant doctors, hands over his face, his OR scrubs on, and placed himself in the empty corner of Henry’s ICU room, apologizing for the decision he made to have Henry get pacer wires surgery. I looked at him and told him to not apologize, there is no way to predict these things from happening. Henry is always going to throw a wrench, and in my mind I knew this was happening for us. 

16 hours later, Dr. Mitchell, the Heart Surgeon came out and told us “it’s a miracle he’s not on life support anymore. The work we did in his chest to clean out the veins that he grew and doesn’t need is what is going to make this transplant successful, if that would have happened during his transplant, we would have lost him. What a God Send.” 

The next few weeks were waiting for him to make a recovery, what that looked like, and then determining if he was still a viable transplant candidate from any brain damage that may have occurred. The longest two weeks of my life. I just wanted my baby to wake up.