Rolling the Dice with My Son's Life

Those of you who have been following on facebook know that Nathaniel was discharged from the hospital last Friday, August 5. When he was discharged, he was on 50 milliliters (ml) of oxygen support, and doing very well on it. The oxygen support runs in 25 ml increments, so ideally, we should have been able to wean him down to 25 ml, and then remove the oxygen support in a short amount of time, a few days to a week.

We left the hospital around 3:45 pm on Friday, with a portable oxygen tank and a pulsox machine (which is used for reading his blood saturation level known as the "sat" and his pulse rate). Around 6:30 the big oxygen tank delivery dude shows up with the oxygen concentrator for use at home. We hook up the oxygen concentrator, get everything going, and finally connect the sensors to the pulsox to get a read on how his sats are. For Nathaniel, sat numbers above 90 are considered normal. We couldn't get him to sat over 85. We messed with it for about 45 minutes to an hour, and decided to call the on-call numbers.

First we were given the Friday evening on-call run around. If you've ever tried to reach somebody who's supposed to be on-call on a Friday evening, you know exactly what I'm talking about.

Finally, we got a hold of the doctor Dr. Sarah Smitherman (whom we have come to love) who was the chief resident on the pediatric floor at the Women's and Children's Hospital in Columbia that night. She told us that she suspected the problem was with the pulsox machine, and not with Nathaniel, so to come up to the hospital and bring the pulsox with us. We called Lesley's mom and dad to come watch Jacob and Caitlin and headed up to the hospital.

Dr. Smitherman hooked up the hospital pulsox to one foot, and our pulsox to his other foot. There was a 10 point difference in their readings. The hospital pulsox was reading around 94-96. Ours was not reading over 85. Dr. Smitherman got in touch with the home health company who gave us the pulsox. The guy from the home health service showed up and examined the machine. I expressed to him at that time that I honestly didn't believe it was the monitor, but rather the sensors that weren't reading him properly. He said he understood what I was saying, but that he didn't have the expertise to make that distinction. He gave us a new monitor, and several of the same sensors that we had to begin with, and sent us home.

All weekend, we watched Nathaniel's numbers bounce around. He would be 92, 94, then drop to 73, then climb back up to 89, then drop to 84, then climb back up to 92, then drop to...you get the picture. The whole time, all of the indicators that would signal that the machine was getting a bad read were pretty quiet. I kept thinking, "How could his readings be so inconsistent but the machine be picking him up properly?"

On Monday about noon, one of the respiratory therapists (RT) who works for the home health group came out to the house. They tried several different placements of the sensors on Nathaniel, but none of them were giving a consistent reading. The RT tried placing the sensor on herself and on Lesley. Inconsistent readings. She said, "Well, we could try ordering another machine, a completely different type, and see if that helps." Lesley told the RT that she would discuss it with me, and we would get back to her.

On Monday afternoon, we went to our family pediatrician, Dr. Weiss, for a scheduled hospital discharge follow up for Nathaniel. We explained to him that we couldn't get a good consistent reading from the pulsox. He believed us; that's why we love him. He offered to call the home health group himself, but we didn't have the number on us. We told him we would call as soon as we got home.

We left Dr. Weiss's office, picked up Jacob and Caitlin, went home, and Lesley called the home health group again. She expressed to them on the phone that we believed that the sensors were the problem. The guy came out, super nice, very kind, obviously concerned for us and our situation. He brought another of the same kind of monitors. I told him the same thing that Lesley and I had been saying for the past 4 days, "I don't think it's the monitor. The sensors are not picking him up." The guy, very nice, said, "I hear what you're saying, but I don't know how to get better sensors than the ones that came with the machine. I'm kind of just the delivery guy." He offered to leave us with a new monitor.

AAAAAHHHHHH!!!!

He left.

At this point, it was Monday evening, and Nathaniel was starting to look pretty tuckered out. He didn't want to eat. He was pretty lethargic. I tickled him in the ribs, shook him (gently to wake him) and tried getting him roused. He just did not want to wake up. The whole time, his pulsox sat was bouncing between 92 and 81. Remember, below 90 is bad. Lesley called again the on-call number. We spoke to a pulmonologist. The doctor asked lots of questions, and asked us to pinch his fingernail. If you pinch your fingernail, it will turn palish gray, and then turn pink again fairly quickly. If it does not, there's a problem. Nathaniel's didn't seem to turn pink again. She asked if his fingers and toes were cold. Yep. She told us that the lethargy, the fact he wasn't eating his normal amount, the "fingernail" test, and the coldness in his fingers and toes made her think there was a "blood profusion" problem. She asked what his pulsox number was. I responded, "Which one, the one now, or the one 5 seconds ago." I tried to explain to her that the pulsox was giving us inconsistent readings, and we honestly have never had a good sense of what his sat was since we brought him home.

The doctor at this point responded to me, "Well, we may be blaming the machine when actually he is getting sicker." I wanted to reach through the phone and smack her. She hadn't been living with the uncertainty about how our son was responding to his oxygen for 4 days. And she has the nerve to say that to me.

To me, her response bespeaks an incredible level of arrogance. There are some, not all, but some doctors who rely so heavily on their equipment, that they stop trusting the parents and caregivers to know their children.

She advised us to go to the hospital because she believed he was anemic. We packed up Jacob and Caitlin and took them to Mima and Papa's. We made the trip up to Columbia. When we arrived at the hospital, we were ushered to the Pediatric Intensive Care Unit, where they hooked him up to a pulsox monitor. His oxygen supply level was set at 125 ml.

It immediately read 96. We watched it for about 15 minutes. It never went below 92. They turned it down to 100. It dropped for a second to 91, and then started reading consistently 94-95. We dropped him to 75. The pulsox number dropped to 89 for a second, and then went back up and stayed consistently at 92-93. We dropped the oxygen to 50 ml. The pulsox dropped to 88, and then went to 92. We dropped the oxygen to 25 ml, and Nathaniel dropped to 88-89, and kind of camped there. So now we know. 50 ml of oxygen is the real amount that he needs in order to keep his sat level above 90. That means for the past 4 days, we have been giving him more than twice the amount of oxygen that he needs. For the past 4 days, we have been terrified to drop his level of oxygen support because the machine was not reading him correctly. For the past 4 days, we've been telling people that what we are doing right now is not working, not that Nathaniel is getting worse, but that we are afraid to do what we were told to do because we can't tell if he's getting worse.

I want to go back to that on-call doctor that we spoke to last night and rub her freakin' face in it. "Can we blame the machine now?" and probably throw in an expletive or two. Doctors who dismiss their patients experiences because they are trusting a machine get zero respect from me.

One of Lesley's relatives, I think it was her grandmother, was born very premature way back in the early 1900's, before incubators, breathing tubes, pulsox monitors. Her parents kept her alive by putting her in a shoe box on the door of the wood stove. Her parents knew instinctively what to do for that child.

I'd like to think Lesley and I know what to do for ours, but I have to admit I've bought into this self-doubt that the machines will tell us something that we don't know. I know these machines' value. The doctors, using these very same machines, saved my son's life. But I also know when the machine is not giving me information that is consistent with what I see in my son. At what point do I stop trusting the machine and just go with my gut as a parent? Man, that's a gamble. Do I really want to roll the dice when my son's life could be at stake? Do I want to take the gamble in trusting a doctor who puts her faith in a machine that I know isn't working?

Anyway, Dr. Gruner, our hematologist who will be helping us manage Nathaniel's hemophilia, is going to go to bat for us. She told us we will be leaving the hospital today, but not until we get a machine that is giving us accurate information. This is twice that we've had to rush to the hospital, not because Nathaniel's health was in danger, but because the machines that we have been told to rely on as a guide for his improvement aren't working.

The most important thing in the end is that Nathaniel is fine. Blood counts came back normal. No anemia. Chest xrays came back clear. No fluid build up on the lungs. Oxygen level was moved up to 75 ml when he got mad when he pooped, which is ok. It'll get turned back down to 50 ml in a little while when he calms down. Sat levels are staying in 91-95 range. That's his normal for now.

And above all, when I look at him, I can tell he's feeling frisky. I know in my gut that he's ok. That's where I'll place my bets for now.