Mom and I were just having the most insane conversation. There we were in my kitchen, TJ peacefully sleeping in his swing. We were talking about what we would do after TJ passes away. Not like way after, but in the hours and days after. I told her I hated having this conversation. I told her I read Teddy’s mom’s post about it and I can’t go there, please not yet. I am actually learning how to live in the moment because when I get ahead of myself I have to deal with what will too soon be our reality. I will have to bury my son. That day will come, but it’s not today, today we snuggle and celebrate our Menkes Awareness victories. Today we fist pump for TJ.
About living in the moment. That is easier said than done.
After the diagnosis, we were prepared to make some really hard decisions. Prepared probably isn’t the right way to say it, we were willing to try to make some really hard decisions. Hospice was going to call us the following week to meet us. But the following week proved to be too far away.
That Saturday, just two days after meeting with Dr. Angle, TJ slept the entire day and by entire, I mean he didn’t even wake up to eat. Then the seizures started early that Sunday morning (Not scary seizures, just subtle eye blinking). TJ had gotten sick with a cold and his compromised body was not doing well with the fight. Tom and I were beside ourselves; we didn’t know what to do. Here we had gone and made all of these hard choices and now he was so sick and nothing was in order.
You see, if you bring a seizing child to the emergency room, they are bound to act. But we had chosen not to have extreme medical intervention, however we wouldn’t sign off on that decision until the following week. Now we’re in a predicament.
So we have the number to a palliative care doctor at Children’s who we have not yet met. I call him. He says, give him Tylenol and keep an eye on him. Call me in a few hours. We do, and TJ is now worse. What should we do? We are terrified. We are alone. We are brought to our knees.
The doctor advises us. He says you have a few options. You can stay home and if he passes away hope that your pediatrician will sign the death certificate (What, someone has to sign a death certificate?!? What’s a death certificate?). You can bring him to the emergency room where I can meet you with paperwork to take him home, but some over zealous emergency room staff member may call DCFS on you and take him into custody in order to treat him. Or, you can go to the emergency room and I can call ahead to explain the situation whereby they will transfer you to the palliative care floor, but you’ll still have to spend the night in the hospital.
What in the world is going on here? God, are you here? Can you help us? What should we do?
Tom: I don’t know Darc; it’s your call. My call?! I don’t know what to do. I thought I already made this call a week ago when I was told that my call was premature. Now I have to make another call. Seriously? Here it comes, breathe.
We’ll take option C. Agreed.
I’ve never been to the emergency room with either of my children, it is late Sunday night, and I am scared.
They are expecting us. They bring us to a room and hook TJ to the monitors. Ugh. Here we go. No, God is here. The staff is kind and brokenhearted right along side us. They don’t know what to do, but decide to test him for a bladder infection. Seems like a logical reason for his fever and lethargy. They will do it with a plastic bag instead of a catheter. Thank you!
Negative, no bladder infection. Few, those hurt!
We spend a few hours in the emergency room. Doctor after doctor comes in to check on us. We are admitted to the hospital. Breathe.
On the palliative care floor, the monitors are removed, the lights are dimmed, our nurse is helpful and unobtrusive. We get TJ settled and lay down for the night; it’s 2:00 am.
7:00 am, the neurologist arrives. We’d like to do an EEG. It’s very simple, noninvasive; it will give us a lot of information. Where is my team? Where are TJ’s advocates? It’s 7:00 am, I slept for 3 hours, I don’t know. I made choices already, where is our support?
7:30 am, more doctors, I can’t remember which departments, no sleep, where is our support?
They start the EEG. That’s not exactly what I would call noninvasive. He has 900 wires attached to his head. Can someone please help us? We need the palliative care team. Where are they? We don’t know what to do. This is all happening very fast. Ok to you, no to that, maybe to you, definitely no to that, help us!!!!!
They arrive. We understand your goals for TJ. Why do you feel so strongly about Hospice? We’ll see if we can speed things along here today. What’s that, you’d like to sign a DNR and take him home? Why?
It would be nice if someone could please at least pretend that you know something about this disease. Just read one piece of information before entering the room.
Later that day….
Now they’ve read about it, now the conversation changes.
Hospice is on the way to the hospital now. We have the paperwork for you to sign. They understand.
TJ’s neurologist enters. She sits on the floor next me. She has tears in her eyes. Now she understands.
The palliative care team comes in with the DNR. They explain it to me. I sign it. They make copies. They have tears in their eyes. Now they understand.
I take TJ home.
This photo of our peaceful little guy was taken a few days after this hospital visit. TJ was in the comfort of his own home. :)
I love you little guy! Let your faith be bigger than your fears.
About living in the moment. That is easier said than done.
After the diagnosis, we were prepared to make some really hard decisions. Prepared probably isn’t the right way to say it, we were willing to try to make some really hard decisions. Hospice was going to call us the following week to meet us. But the following week proved to be too far away.
That Saturday, just two days after meeting with Dr. Angle, TJ slept the entire day and by entire, I mean he didn’t even wake up to eat. Then the seizures started early that Sunday morning (Not scary seizures, just subtle eye blinking). TJ had gotten sick with a cold and his compromised body was not doing well with the fight. Tom and I were beside ourselves; we didn’t know what to do. Here we had gone and made all of these hard choices and now he was so sick and nothing was in order.
You see, if you bring a seizing child to the emergency room, they are bound to act. But we had chosen not to have extreme medical intervention, however we wouldn’t sign off on that decision until the following week. Now we’re in a predicament.
So we have the number to a palliative care doctor at Children’s who we have not yet met. I call him. He says, give him Tylenol and keep an eye on him. Call me in a few hours. We do, and TJ is now worse. What should we do? We are terrified. We are alone. We are brought to our knees.
The doctor advises us. He says you have a few options. You can stay home and if he passes away hope that your pediatrician will sign the death certificate (What, someone has to sign a death certificate?!? What’s a death certificate?). You can bring him to the emergency room where I can meet you with paperwork to take him home, but some over zealous emergency room staff member may call DCFS on you and take him into custody in order to treat him. Or, you can go to the emergency room and I can call ahead to explain the situation whereby they will transfer you to the palliative care floor, but you’ll still have to spend the night in the hospital.
What in the world is going on here? God, are you here? Can you help us? What should we do?
Tom: I don’t know Darc; it’s your call. My call?! I don’t know what to do. I thought I already made this call a week ago when I was told that my call was premature. Now I have to make another call. Seriously? Here it comes, breathe.
We’ll take option C. Agreed.
I’ve never been to the emergency room with either of my children, it is late Sunday night, and I am scared.
They are expecting us. They bring us to a room and hook TJ to the monitors. Ugh. Here we go. No, God is here. The staff is kind and brokenhearted right along side us. They don’t know what to do, but decide to test him for a bladder infection. Seems like a logical reason for his fever and lethargy. They will do it with a plastic bag instead of a catheter. Thank you!
Negative, no bladder infection. Few, those hurt!
We spend a few hours in the emergency room. Doctor after doctor comes in to check on us. We are admitted to the hospital. Breathe.
On the palliative care floor, the monitors are removed, the lights are dimmed, our nurse is helpful and unobtrusive. We get TJ settled and lay down for the night; it’s 2:00 am.
7:00 am, the neurologist arrives. We’d like to do an EEG. It’s very simple, noninvasive; it will give us a lot of information. Where is my team? Where are TJ’s advocates? It’s 7:00 am, I slept for 3 hours, I don’t know. I made choices already, where is our support?
7:30 am, more doctors, I can’t remember which departments, no sleep, where is our support?
They start the EEG. That’s not exactly what I would call noninvasive. He has 900 wires attached to his head. Can someone please help us? We need the palliative care team. Where are they? We don’t know what to do. This is all happening very fast. Ok to you, no to that, maybe to you, definitely no to that, help us!!!!!
They arrive. We understand your goals for TJ. Why do you feel so strongly about Hospice? We’ll see if we can speed things along here today. What’s that, you’d like to sign a DNR and take him home? Why?
It would be nice if someone could please at least pretend that you know something about this disease. Just read one piece of information before entering the room.
Later that day….
Now they’ve read about it, now the conversation changes.
Hospice is on the way to the hospital now. We have the paperwork for you to sign. They understand.
TJ’s neurologist enters. She sits on the floor next me. She has tears in her eyes. Now she understands.
The palliative care team comes in with the DNR. They explain it to me. I sign it. They make copies. They have tears in their eyes. Now they understand.
I take TJ home.
This photo of our peaceful little guy was taken a few days after this hospital visit. TJ was in the comfort of his own home. :)
I love you little guy! Let your faith be bigger than your fears.