Pacers are ON!

FINALLY we went to the doctor yesterday, October 6th, and got to turn on Joshua's diaphragmatic (breathing) pacemakers.

What exactly does that mean? What all is involved?

Well, check out this diagram again:


It shows an electrode implanted near the neck that connects to the phrenic nerve. The phrenic nerve causes the diaphragm to contract. Then the diaphragm contracting makes air suck inside the lung. When it releases, the lung pushes the air back out.

In the diagram above, just below the electrode is a receiver. It receives impulses and sends them to the electrode, causing the stimulation for the diaphragm to contract.

Both the electrode and receiver were surgically implanted into Josh's chest back in June. His incisions and placement of the devices were a bit different than in the diagram above. Here is a picture of Josh's incisions from back in June and July.





He has two over the nipple area and two underneath. The two above are very deep where the doctor went in and placed the electrode around the phrenic nerve. The two below are where the doctor made much shallower cuts to make pockets to hold the receivers. The receivers are about the size of quarters. The electrodes and receivers look like this:



Over the receivers, on the outside of the skin, when you are going to turn on the pacers, you wear antennas. They look like this:



The antennas plug into a small box, called a Mark IV Transmitter. It looks like this:


The box sets how strong the "shocks" are to make the diaphgram contract and it controls how often it sends the shocks. There are controls for strength for both the right and left lung. And you can turn on or off each side. This box is worn on a strap that can be connected around the waist like a belt.

Well, yesterday, we went to see Dr. Kelly Smith, Joshua's lung doctor (pulmonologist) in San Antonio. He placed the antennas on Josh's chest with the circles around the receivers. We held them in place with a wide Ace bandage we bought. He then plugged in the antennas in the Mark IV transmitter box. And he turned on just the left side, to set the strength. And for the first time, we saw how it looked when the shock made Josh's chest move and take in a breath. I hope you can see this video I took showing the left side pacer working:



If not, here are some still pictures from the doctor's appointment:

The doctor gave Josh a break after setting the left side. Josh got back on his ventilator and the doctor went to see another patient. Then, he came back and set the right side. Then, he turned on both sides at the same time. He adjusted and readjusted many times the strength on both sides. And the doctor changed the breath rate several times.

All the while, we kept Joshua's trach hooked to his End Tidal CO2 monitor (a tube that connects the trach to a box that checks how much CO2 is in his breaths). And we kept his pulsox hooked up to his finger. That checks the amount of oxygen in his blood. It also tracks how fast his heart is beating.

When Josh was off his ventilator and we started the first side of the pacers, making adjustments to strength and rate, his CO2 went up to the low 50's which is a bit too high. And his oxygen saturations were down in the low 90's to high 80's. But by the time the doctor got everything set just right, the CO2 went down to the low 30's and his oxygen saturation went up to near 100 and stayed there. Both those were perfect! And his heart rate went from being over 100 beats a minute to down in the low 80's - much better.

We were very pleased with the results. But we have to keep in mind that using the pacers will make his diaphgram muscle pretty tired out and sore, since he's not used to it working so hard like this. So, he is only using his pacers for short times and then taking breaks. He will stay on longer and longer as we go, as he tolerates it. Josh gets to decide and that is great.

The only problem we have seen so far, and it concerns me a little, is a little blistering around the top outside part of the antennas on Josh's chest. I noticed them this morning as we went to put the pacers back on for today. Josh didn't complain about them, but I could see it was a bit worse on the right side than the left. The right side is set a bit stronger than the left. I'm not sure if that is the reason for them or not. But, I put ointment on them and will check on them again tonight. If they get worse, I will have to call the doctor and see what he recommends.

Well, I've gotta run now. I've got to head to work soon for my third day working in a daycare center!