Thy life is one of very little ease.
I feel terribly lazy writing post after post in diary-like chronicle format, but it’s such a good way to answer the “What the hell just happened?” question.
Let’s start from the beginning. I was born the son of a sharecropper…
OK, not that far back. Let’s start with, “What the hell just happened?”
August 1: Home after 90 days at Children’s.
August 2-3: Ari has difficult time transitioning from apartment in the city to lake house. Wakes up in his crib on morning of August 2. Stretches and looks around. Looks around again. Yells, “Nurse! Nurse! Where the hell am I?” Erica comes a-runnin’ and all is well. Takes a few days getting used to his new old digs.
August 3-8: Cheerful, smiling, enjoying life at home. When nothing bad is happening (foreshadowing!) he’s happy as a clam in high water, ostensibly protected from the sharp bailiffs of the briny sea.
We’re weaning methadone every other day according to a very specific schedule. We wean one narcotic at a time. First is methadone, next is Ativan, and after that is Clonidine. Will take well more than a month to get off of them all.
August 9: Appointment with gastroenterologist. Ari is gaining weight at home, but at three toed sloth pace. Better than weight loss, but not fast enough gain by any measure. As well, he’s taking some milk by mouth, 10 to 50 ml per meal. The rest gets tubed.
- We increase is food volume and thus his caloric intake every day and hope he tolerates it and gains.
- We schedule getting a PEG tube for late August, early September. Why? He’s not eating enough by mouth, and after a while, the NG tube becomes impractical. Irritates his skin. Must be re-taped every day (which is 5 minutes of band-aid style ripping trauma for him and us) or he’ll pull it out (which is a missed meal and an ER visit). Impractical.
August 10: Appointment with Wayne in cardiac clinic. Mind you, we have had two outpatient clinic visits so far with Ari, and he’s been admitted to the hospital each time. Every time we try to get out, they pull us back in!
This time, we made it home…for a bit. (Wicked obvious foreshadowing!) We didn’t echo because he looked so good, and his chest X-ray looked better than when he left 10 days earlier. His lungs are now almost normal, and his heart has shrunk. Both good. Next step was to echo when he is sedated for the PEG tube placement just for a looksee and doublechecksee.
Ari = all smiles all day. Clam.
Morning: Jill, Rich, and Sarah in for a visit! Ari is cranky all morning, ruining his rep as the happiest baby on the block. We say, “He’s never cranky. In fact, the only times we’ve seen him cranky for extended periods he ends up having surgery.” (Do I even need to say foreshadowing?)
Ari throws up. First time since being home.
Needs to be held all day. Consolable and sleeping intermittently, but getting a little worse.
9:35 p.m. I send an email, from which the following is drawn, to our cardiologist and NP:
Today we are fairly confident Ari has been having methadone withdrawal. Tremors, sweating, irritable, trouble sleeping, incessant sucking, yawning, 1 vomit 1 spit up, and needs to be held. Next dose is in 1.5 hours. He’s sleeping in Erica’s arms so we’re confident we’ll make it until the normal dose time with Ari somewhat comfortable, but we have an issue we need your help with.
- Our methadone prescription came in a dozens of pre-drawn syringes according to the wean schedule. We do not have enough methadone to “hold steady” for an extra day. If tomorrow is like today, we would like to follow your instructions and do that. As of now, we wouldn’t be able to.
- I believe the methadone may have been drawn at the PHARMACY NAME WITHHELD without the precision that seems to be important with this kind of wean. See the pictures attached. One picture is of the 0.2 ML dose for today. You can see it’s about 25% air. We were taught to flick the air to the top of the syringe and then push it out when we draw medication to have a precise dose. This seems not to have been done so it looks like the dosing is off.In days previous this wasn’t much of an issue as it was a smaller percent of the dose being air. But as the doses get smaller, there’s a larger ratio of air, so the dosing is increasingly incorrect.Because of this, I took a look at the 0.05 ML doses that come in the last days. As you can see, the one I grabbed is 50% to 75% air. If we learned to use the syringes properly (and I think we did), it seems the later doses will be way off.
No emergency for tonight, and Ari is comfortable in Erica’s arms, but I believe we will need to solve this tomorrow and get medication redrawn properly.
Medical team responds immediately to solve issue as they always do if we sound the alarm. (Seriously, immediate response from wherever they are in the world.)
Also, we plan to move the PEG tube surgery up to this Friday – three weeks earlier than planned. Now we get into the hospital mid-week to prepare for that, give him a serious review for withdrawal issues, and move the echo sooner.
Night: Sleeps mostly OK. Almost normal up and down.
Throws up. Cranky. Withdrawal continues, but maybe a little less. A few smiles here and there. A few good naps here and there (for him, not us).
We talk a lot about our instructions for managing the wean process: you’re likely to see some withdrawal symptoms. Wait them out if Ari is consolable, and get to the next dose and they should subside. Over time he’ll get used to the dose and smooth out, and then you start weaning again.
If he’s inconsolable for extended periods, call for help or come to the ER.
It’s 24/7 work, but he’s consolable, and we have talked to our cardiologist and nurse practitioner multiple times throughout the day. We solve methadone dosing issues.
We keep going.
Erica up all night holding Ari. Sleeps a little in her arms and in the swing here and there, but can’t be put down in crib. I take over in a.m.
August 13 – Day
Rough, but consolable.
7:30 p.m. Must be held and walked to stay calm (but not clam!). Erica and I take shifts.
9:30 p.m. Erica goes to sleep, I walk, rock, feed, medicate, and read 19th century sonnets with Ari until 11:30. I get him in his swing and he naps for a bit. I go to sleep.
11:40 p.m. Ari cries. Erica goes to work until 2:00 a.m.
2:00 a.m. I take over. Nothing is working. Not even Cyndi Lauper. No true colors shining through.
3:30 a.m. I go see Erica.
Me: “Erica? Wake up. What do you think about going to the ER?”
Erica: “Right now? We’re planning on going tomorrow or Wednesday. Can we wait?”
Me: “No, I don’t think so.”
Erica: “Let me try for a while.” (She is better at this than I am. Make sense to try.)
ACTION STATIONS! ACTION STATIONS! SET CONDITION ONE THROUGHOUT THE SHIP. THIS IS NOT A DRILL.
We start for the ER.
Ari throws up so hard his tube pushes out of his nose. Eyes bugging out of his head.
We grab his stuff. Meds. Food.
4:47 Driving. Ari calms down. Falls asleep. We call 8 East and talk to the cardiology fellow on the floor. He knows Ari very well, and calls down to the ER to give the attending physician the heads up.
5:05 Ari wakes up all smiles. You little bugger!
5:08 Throws up. Inconsolable. By the way, inconsolable is not just crying nonstop. There are degrees. He’s had a stomach ache in the past that caused nonstop crying. It was like this when he was inconsolable but we stayed home.
Now it ain’t that.
You know the part of any movie we’ve all seen at some time in our lives where the guy tries to get off heroine? He’s locked in a padded room with a straight jacket on. Screaming with great vengeance and furious anger. Unbridled suffering.
Put this in a 9.5 pound package, and you have our little “not so happy as a” clam. Far from friends and they family to roam; Forced, like a Hessian, from thy native home.
Emergency room attending physician evaluates Ari. “He looks like hell.” Nice job.
Gets history. Pages Wayne. Pages cardiology fellows.
3 fellows come down from the 8th floor to see Ari. They all know him quite well. They work with the attending to get a plan together to recapture him on methadone (if this is, indeed, the issue), and get a quick battlefield echo to check cardiac function and his mitral valve.
Note that the last time he looked like this, we thought it was withdrawal. Then we checked his heart via echo. Function looked bad, and his mitral valve stenosis gradient was an “8”. 8, we learned, is the typical line indicating surgery.
9:15 a.m. 1st rescue does of methadone. Not settling out. Hot and sweaty. Reluctant to give him more methadone until we check his heart function. If it’s cardiac function and not wean related, you can get into trouble with too much narcotics.
9:30: NG tube put back in. Chest x-ray to check placement, and look at heart size and lungs. X-ray looks good all around. Same as in clinic 5 days earlier.
10:55: Quick echo. Cardiac function looks good, but his mitral stenosis is reading…wait for it…wait for it: 8.
Thy valves are, sure, no safety valves to thee,
While rakes are free to desecrate thy bed,
And bear thee off,—as foemen take their spoil, —
Fellow: “This doesn’t mean anything yet. We have to wait for Wayne and Ram to see the images and interpret them. The conditions for the echo were not normal (E.R., Ari in extreme distress, heart rate in the 190s, usually 120s to 140s when awake and happy, 90s to 1teens when sleeping). Now is not the time to jump to conclusions.”
But cardiac function looked good, so that was one hurdle jumped on the path to more methadone if he needed it.
Question #1: 8 South (CICU) or 8 East (the floor)? Fellow was on the fence, but opted for 8 East as the bed was ready, the attendings could care for him from either place, and we wanted to see if he’d settle out.
Question #2: Withdrawal or deteriorating cardiac function? Withdrawal was still in the lead, but cardiac issues gaining fast.
11:30: 8 East. On the monitor, his heart rate is 190s to 210s. Not good. Inconsolable.
Back and forth. Move to 8 South? His heart rate would drop a little. We wait. He’d bounce back up. We watch the monitors and try to sooth him. Move 8 South evaluated again. Heart rate drops a little. We stay.
1:00 p.m. 2nd rescue dose – this one bigger – of methadone on board. He starts to settle out. Heart rate 170s (still very high), and looks like he might fall asleep.
I fall asleep in room at 1:30.
3:30 p.m. I wake up and look at the monitor. He’s asleep with a heart rate of 106.
Doubletake. 106? No way. What happened?
We talk. He settled out. Erica says Wayne called the attending on the floor. He looked at the images and told her he doesn’t believe it’s cardiac related. You’ve all seen pictures of his new mitral valve. It’s big and weird and wacky, so it doesn’t read like native valve on echo. And, again, it was a war zone echo. Not exactly ideal. Sit tight for now.
I take a walk and lose it in the hall.
Go back in and we sit for a few hours.
6:20 p.m. Wayne comes. Tells us the valve is wide open and functioning properly. Until proven otherwise, your son is a drug addict and too skinny, and that’s all we have to deal with. Assuming he stays settled out, PEG tube surgery still on for Friday. Echo then when he’s under anesthesia just to looksee and doublechecksee, but we expect to see heart looking OK-ish like usual, and get back to weaning and fattening him up.
Since then… He’s settled out, but not exactly clamlike. He needs to be held and is cracking some smiles, but he’s just been through a war and he looks it. Probably needs a few days just to recover, but for now the battle is over. Until, you know, surgery on Friday, but this one we’re happy to have as it’s a path to growth, which is his next big hurdle along with getting off the smack.
Nurses and doctors required us to go home at bedtime as I had been up for 48 hours and Erica had been up for closer to 72. But trust me, it was tougher on Ari.
Though thou art tender, yet thy humble bard,
Declares O clam! thy case is shocking hard!
He’s been through so much, and borne it all with grace. For a kid that has just too many cards stacked against him – with too little reserve and many more hills to climb – he finds a way to keep soldering on.
And so shall we.
Today: Back on the horse.