Tug of War

Tug of war. That's what it was like. That's what it was like when Ellie was in the hospital and it's what it was like on friday. Two seperate "teams" pulling in different directions. 

On friday, my mom and friend Jodi went with me down to the hospital to meet with Ellie's doctors. My anxiety started to go up as soon as we neared the parking ramp. It's a new parking ramp since I worked there, so the only time I was in there was when we walked our parents to their car a few hours before Ellie died. Dave and I went out to get a sweatshirt and I took a picture of Ellie out of my wallet so the nurses and doctors would know how pretty she was. I remembered crying at seeing her diaper bag, seeing her empty bottles and diapers, all normal baby things- baby things that Ellie had no need for at that time.
I felt ok until the doctor brought in his laptop and opened up the powerpoint presentation- the first slide said, "DEATH REVIEW: ELLIE." I couldn't stop looking at it- there it was, literally in black and white. We met with her infectious disease doctor, Dr Pozos, who saw her at St. Paul and intensive care doctor, Dr. Kurachek. Dr. Kurachek did not take care of Ellie but did her case review. He interviewed over 20 people involved in Ellie's care, including ambulance personnel, nurses, resp. therapists. He used that information during a case review with ICU staff and during an ECMO case review. Both doctors were so kind, caring and compassionate.
During the review, the doctors talked to me like a nurse. They presented a lot of information in a time-line which was very helpful to me. My memories from that day and night are fleeting, blurry and very confusing, to have the day broke down in that fashion helped me better understand how things played out. They told me what blood products she received, and what antibiotics she was on. I never doubted that everyone did everything they possibly could to save Elle, but it was good to see it written out. However, it was nauseating to see how bad her labs were and to see written down what meds she was on.

Here's the overview: At some point in Ellie's life (most likely in-utero) the blood supply to her spleen was cut off. This caused her spleen to die and be non-functional. There was never any indication that Ellie did not have spleen function. Without spleen function you are very susceptible to certain infections, especially as an infant. Ellie contracted a very common bacteria that her body was not able to fight. It was a pneumococcal infection, which causes ear infections, sinus infections, etc., it is an illness you are vaccinated against; however, the strain that infected Ellie is not included in the newest PCV13 vaccine. Either way, without a spleen, Ellie would not have likely developed antibodies against the strain, even if she had been vaccinated.
Once the infection had taken hold of Ellie's body, it was too late for us to do anything. Her immune system went into overdrive trying to fight the bacteria. It's like when you get a cut on your finger and the area around it gets a little oozy, red and swollen. That's what happened to Ellie on a full-body scale. Her vessels started to leak fluid into the tissue, which caused blood flow to her organs to be compromised. Her body depleted itself of it's clotting factors, which is referred to as DIC. It is a very hard condition to combat. Once Ellie's body got so far down this road, there was just no way back.
We discussed why ECMO didn't work for her. ECMO is a heart-lung bypass machine- basically a pump. ECMO works well if you have a problem with your heart. But if you are a patient like Ellie, and your vessels are leaking, it isn't going to work. The team kept pumping fluid & blood products into Ellie's body but since it was all leaking into the tissue, they weren't able to remove it and put oxygen back into the blood. The cycle couldn't be completed.
The doctor mentioned that one thing that came out of Ellie's case review was if there should be criteria established for not offering ECMO to a patient. When the doctors explained the chances of survival for Ellie on ECMO we were told that without it, her chance of survival was zero. With ECMO, it was still very low- around 1%. As her parents, we had no choice- we had to take that one percent. She was just nine months old, had never been sick before. We would have never forgiven ourselves if we didn't take that chance. The doctors knew all along how sick she was, they knew she had little to no chance of surviving- even if she did, there would have been significant brain, kidney, etc. damage. But as Dr. Pozos said, "the hardest thing for us to do as doctors is take away a parent's hope." By putting Ellie on ECMO, we can say that she literally was given every possible chance. The flip side is, if we hadn't put Ellie on ECMO we would have an more time with her while she was alive. When they were hooking her up to the machines, we couldn't be with her. It was several hours. Who knows how long she would have lasted without ECMO, but we could have had some time before she looked so awful. The doctors said she probably would have looked similar to the way she did at the time of her death even without the ECMO. But even if we had to watch it happen before our eyes, we still would have been holding her. She wouldn't have been alone.

It's like I was two people on friday.
I was Ellie's mom... A mom sitting there listening to doctor's explain, blow-by-blow, how our perfect girl was taken from us. I asked if they thought she was in pain or if I'd nursed her longer, if that would have saved her. I asked if I should have brought her in earlier, maybe that would have saved her. But they don't think she was in pain, extended breastfeeding would not have been enough and there was no way to know how sick she was, therefore, no reason to bring her in earlier.Our meeting did take away a lot of my guilt surrounding those issues. It was something I had to do as her mom, to make sure everything was done for her. And I think it was.
I was a nurse. I saw and understood the severity of Ellie's illness, early on, from a medical standpoint. When Ellie was in the ER and PICU, they told me most of her labs and I understood them. But at the review, it struck me in a different way. To see it written, made them seem even worse. As a nurse, I asked what medications she did or didn't get. As a nurse, I saw that Ellie really never had a chance. I am thankful that I am able to understand what happen to Ellie on a physical level. It allows me to trust that the doctors and nurses made the right decisions.
It was like that when Ellie was in the hospital. Part of my brain knew how sick she was and how unlikely it was to survive an illness of that magnitude. But the other part of my brain (and my whole heart), the Mom half, kept thinking "she'll be fine. this couldn't be happening to my baby."

Generally, I think the meeting was helpful to me. But one thing has stayed at the front of my mind... I know we had to give Ellie that 1% chance of survival that ECMO provided. How could we not? That's the Mom half of me. The nurse half, that half says, I should have seen how sick she was. I should have refused the ECMO and taken what little time I had with her. Hindsight is 20/20. I know this. But still.

It's a constant tug-of war.... Mom vs. Nurse... Could have vs. Couldn't have... Should have vs. Shouldn't have...The what might have been vs. The what is....




Ellie- 24 hours old.



Love.