Christmas came and went filled with the sort of spirit that makes me want to imbibe spirits. Henry was a lamb in the nativity play. Again, Ian tried to hold out for the role of Luke Skywalker. Henry became incensed when the understudy baby Jesus was given to Gwyn to hold on stage. He handled the situation by trying to actually sit on the baby. On Christmas Eve, we hosted a cookie buffet at the PICU for families staying there. Pattye (Malley’s mom) helped me pull it together and of course those incredible nurses. I met a two year-old, Geni, who had a heart transplant at four months old. She was back in the hospital for other stuff. Her mother, Megan, is great – we plan to do lunch. I need to be with someone who has been on the other side of this.
We served over 20 families and Henry and Malley roamed the halls handing out candy canes. Again I was struck by how many poor families are present. Families living in the waiting room and eating from vending machines because they can’t afford the $3.00 cafeteria meal. Families where only the 8 year-old speaks English. Families ravaged by addiction, little opportunity, no winter coats, no cars. You try to not make judgments as you had them a cookie tin to fill but that mother could not be older than sixteen. The grandmother who asks if she can take an extra candy cane for her other, healthier grandson. So many of them seem broken, celebrating Christmas in the last place anyone wants to be.
Going to Stanford has changed me, again. Even as Henry’s condition becomes dire, I am beginning to feel more in control, like I am achieving equal footing with the doctors who treat him. I have learned that how doctors treat you is based on how much information they perceive you understand. Five years into this, I understand a lot.
Now I ask questions that set doctors aback but effectively change the tone in which they speak to me.
“Who will be opening my child up before you arrive in the OR?”
“What do you expect to happen if Henry comes out of surgery still on the bypass machine?”
“When you say his survival rate is 70%, what factors are you considering?”
The medical profession has been well trained to only disseminate the amount of information the family seems able to handle. We, the family, set the bar for how doctors will speak to us.
The doctors say how much they appreciate “parents like you” – researchers, bulldogs, always present, always taking notes. But I know I also put them on edge. When they don’t look me in the eye, I move so that they have to. When I don’t understand something, I ask them to explain it. And I come prepared with the Henry binder – meds listed, past surgical reports, copies of our insurance card. I ask what happened at conference each time Henry’s case is discussed, having learned that the impressions doctors take from those reviews differ amongst them. I took my business cards and had labels placed on the back with all cell phone numbers and emails, giving them to doctors with the spoken expectation that I wanted to hear from them again. I am sure I annoy them. I don’t give a damn.
When your child is in the PICU there are multiple players involved – doctors, surgeons, nurses, technicians, therapists and the family. But the inner triad is really between the MDs, nurses and the parents. I had to insist that I knew my child best. While all the wonderful medical personnel were compassionately treating his condition, I was Henry’s ultimate caretaker. It was up to Ned and me to fight for him, to remind the doctors that he may be Protein C deficient, to insist that I remove his EKG strips because I could do it without him freaking out, that an O2 sat of 76% was normal for my boy. Sometimes it distorted my sense of motherhood because I felt more like a social worker or lawyer. I needed to present his case, insert myself into dialogues and always, always, remind the doctors and nurses that Henry’s parents were keenly watching them. Being emotional, being the heartbroken mother happened privately but it splinters your personality. I was devastated and trying to be in charge at the same time.
You cannot buy your children enough Christmas gifts to help them overcome tremendous sadness. Ned spends as much time here as he can but Gwyn and Ian understand that there is no going back for the two of us. Now we’ve told them that their brother needs a new heart.
Of course they had questions like “Where will you get a heart?” “Will Henry die?” In my daughter’s brief life, she has lost her aunt and both of her paternal grandparents. She can barely remember a time before her “broken baby brother” was born. Her parents divorced. It is too much for her, for Ian, but I don’t seem to be able to provide a more stable life for them.
Ned and I tell the children that we don’t know when Henry’s heart will arrive and that he may not make it. I can hear therapists around the world gasp at my horrible handling of this situation. I don’t want to give them more information than they can process but I can’t lie to them either.
Ian thinks that getting a new heart is like special ordering hardware. “Can we get one at Home Depot?”
We do the best we can. “Sometimes children are hurt very badly in accidents and their bodies die. But you know that God is holding them.” I don’t want them to dwell on this. In a child’s mind, organ donation must seem incredibly violent.
We also tell them that nothing is going to change right now, as if there is anything left in their lives that could be changed. Mom is going to take Henry to St. Louis to visit his new transplant doctors in the next several weeks but that she will only be gone for a few days. Everyone is heading back to school after Christmas break, Henry included. Mom will wear a special beeper. When that goes off, it means a new heart is waiting for Henry in St. Louis.
Then it’s like the other times Henry’s had surgeries. Mom and Dad will be gone for a while but grandparents, aunts and friends will come and spoil you rotten. Then, all three of us will come home and Henry should be doing much better.
“It will all turn out fine. You’ll see.”
Gwyn leans against me and says, “You’re good at being brave.”
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