In 1999 Margret got tired of being tired. She decided she wanted to get her heart repaired, at long last, but the pediatric cardiac surgeon suggested by our family doc said she was not a candidate for surgery.
Upset that he would not explain further, I hunted the internet for a doctor specializing in adults with unrepaired CHDs, and found one at Jefferson. We got an appointment and he told Margret that she had Eisenmenger's Syndrome. Finally, in January 2000, we had a diagnosis! He said the reason she was not a candidate for surgery to repair her heart is because changes in the lungs caused by the heart defect become permanent, and are not compatible with a repair. In other words, if she got her heart fixed, she would die. He encouraged us to consult with the tranplant doctors at Temple. It was a year of catastrophes, so we did not get with the transplant people until October. Her evaluation was scheduled for just after Thanksgiving. My Mom died Halloween morning, and we buried her with Dad on November 6th.
Margret had been put on oxygen in June, because I noticed her feet turned from their usual purplish color to a dirty white when she walked around. No one had thought to check her oxygen saturations before May, because she seemed to be doing well. I had no idea. Her saturations were in the low 80s, and 6 liters of oxygen only brought them up to the high 80s.
The transplant folks originally thought an 'en bloc' of heart and lungs would be a good idea. They finally settled on a plan of giving her new lungs, and borrowing a pediatric cardiac surgeon from the children's hospital next door to repair her own heart. Our insurance said no. Given a choice of fighting the insurance or going to a different hospital, we went.
The doctor there said there was medication that helped with the PH. I'd asked the transplant guys about medications, and they tossed it off with, "Oh, it's experimental, we only give it to our people at the very end to help them hold on so they can get new lungs." The new doctor explained there were THREE medications she found useful, and how she did a challenge with each medication while measuring the pressures on both sides of the heart through catheters to decide which medication was best, and what dosage would be most effective. I explained it again, in little words, to make sure Margret and I both understood. Then Margret decided she would try medication. It was a week in the hospital, the first day in the cath lab, that night in CICU, and the rest of the week in the cardiac stepdown unit while the doctor adjusted the doses of the other medications she would be taking with the main one.
When we went home, Margret trotted right up the stairs to her room, not stopping once! I had tears in my eyes, because she used to stop 3 times on the way up the stairs to rest, finally clinging to the rail at the top while deciding if she had to use the bathroom, or if she could just go plop on her bed.
Showing posts with label low sats. Show all posts
Showing posts with label low sats. Show all posts
Thursday, October 16, 2008
Wednesday, October 8, 2008
The Mask and the Terror
When Margret had her crash the first night, her lungs were so bad the doctor warned me just the act of placing a breathing tube could cause a heart attack: No more Margret. So I asked him to try without the tube. She was on 100 per cent oxygen, with nitric oxide, to raise her oxygen saturations. She was not tubed. That worked, for a while, with a nebulizer mask.
Her sats kept dropping, so they tried a ventilator with a FACE MASK, not an endotracheal tube. It took several tries to find a mask that fit decently. Third time's the charm. That mask's blue color made it hard to read her lips through it. The mask had to be tightly strapped to her face, or leakage would cause several different kinds of alarms on the vent, as well as squeaks, whistles and fwubby noises that variously annoyed and alarmed her. She had to talk very slowly and choose her words with care to be understood from behind the mask. Sometimes even with her care, I couldn't tell what she said, but "I love you, Mom," was an easy one.
The skin on her nose bridge started breaking down from mask pressure. At this point the vent was set to 10-15, meaning the baseline pressure was 10 psi, and added 15 more psi to help on an inhale.
The Respiratory guy went hunting for a nasal pillow style that might spare her poor hurting nose. The ventilator they used with her was not made to work with masks having exhaust ports; the vent detected lower than assigned pressure, and raised the output pressure to reach the assigned pressure. Problem: the nasal pillow styles have exhaust ports.
The RTs patched over the 8 small exhaust holes, and fit the nasal prongs to her nose. This nasal pillow mask required a chinstrap, elasticky, about 2.5 inches wide, fastened by velcro, as part of the head gear. It looked much like an old fashioned toothache band on her.
Margret didn't like it much, but better, I think, than the full face mask. At least at first.
Her movements and attempts to talk caused the chinstrap to precess anticlockwise around her face, to the point where the nasal part slanted sharply from horizontal. The nurse, the RT and I were talking to Marg. Then I said the angle looked uncomfortable, and suggested the device be repositioned. The RT unfastened and started repositioning. About now some unplanned combination of movements slipped one nasal prong out of Margret's nose, spilling 25 psi of pure oxygen across her open eye. Margret jerked back, ripped the nasal mask off her face, threw it as hard as she could, fought frantically and began turning blue.
As all the vent and monitor alarms started yelling at once, I grabbed her hands, looked into her eyes, and tried to talk her down to calm. Several free nurses and RTs dashed into the room, the big RT who had engineered the patch ending at her head. The others stopped, to be ready if more hands were needed. He grabbed the blue mask off the top of the vent and the vent tubing.
I spared a quick glance at the monitor - sats 44 and dropping. I talked and talked, holding tight to her fighting hands. Her face turned bluer and bluer, verging on deep plum.
Mask attached to delivery tube, the RT held it to her face, and with help, whose I don't know, I wasn't looking, fastened it securely. Focused on Margret, staring into tiny pupilled eyes, I believed in that moment she had no idea who I was except a person keeping her from tearing the mask off anew.
On vent assisted oxygen once more, her color crept slowly from purple to pink, her sats rising into the upper seventies. Intelligence and the Margret I knew leaked back into her eyes. I kept talking to her, and she stopped fighting to free her hands.
Time from ripping the mask off and flinging it to being back behind the blue mask perhaps 30 seconds, maybe less.
Mom's terror, TOTAL.
Someone asked if I was OK. I said yes. The shaking didn't start until after it was all over and I had stepped out into the hall. Marg's nurse asked me if I was OK, and I said, "No, but give me a little time."
Later, talking to Margret's doctor, I learned that her sats had fallen to 36. Yup. Terror. Yes, I tend to hold it all together when the chips are down. I'll have my meltdown later, when it's safe to do.
Her sats kept dropping, so they tried a ventilator with a FACE MASK, not an endotracheal tube. It took several tries to find a mask that fit decently. Third time's the charm. That mask's blue color made it hard to read her lips through it. The mask had to be tightly strapped to her face, or leakage would cause several different kinds of alarms on the vent, as well as squeaks, whistles and fwubby noises that variously annoyed and alarmed her. She had to talk very slowly and choose her words with care to be understood from behind the mask. Sometimes even with her care, I couldn't tell what she said, but "I love you, Mom," was an easy one.
The skin on her nose bridge started breaking down from mask pressure. At this point the vent was set to 10-15, meaning the baseline pressure was 10 psi, and added 15 more psi to help on an inhale.
The Respiratory guy went hunting for a nasal pillow style that might spare her poor hurting nose. The ventilator they used with her was not made to work with masks having exhaust ports; the vent detected lower than assigned pressure, and raised the output pressure to reach the assigned pressure. Problem: the nasal pillow styles have exhaust ports.
The RTs patched over the 8 small exhaust holes, and fit the nasal prongs to her nose. This nasal pillow mask required a chinstrap, elasticky, about 2.5 inches wide, fastened by velcro, as part of the head gear. It looked much like an old fashioned toothache band on her.
Margret didn't like it much, but better, I think, than the full face mask. At least at first.
Her movements and attempts to talk caused the chinstrap to precess anticlockwise around her face, to the point where the nasal part slanted sharply from horizontal. The nurse, the RT and I were talking to Marg. Then I said the angle looked uncomfortable, and suggested the device be repositioned. The RT unfastened and started repositioning. About now some unplanned combination of movements slipped one nasal prong out of Margret's nose, spilling 25 psi of pure oxygen across her open eye. Margret jerked back, ripped the nasal mask off her face, threw it as hard as she could, fought frantically and began turning blue.
As all the vent and monitor alarms started yelling at once, I grabbed her hands, looked into her eyes, and tried to talk her down to calm. Several free nurses and RTs dashed into the room, the big RT who had engineered the patch ending at her head. The others stopped, to be ready if more hands were needed. He grabbed the blue mask off the top of the vent and the vent tubing.
I spared a quick glance at the monitor - sats 44 and dropping. I talked and talked, holding tight to her fighting hands. Her face turned bluer and bluer, verging on deep plum.
Mask attached to delivery tube, the RT held it to her face, and with help, whose I don't know, I wasn't looking, fastened it securely. Focused on Margret, staring into tiny pupilled eyes, I believed in that moment she had no idea who I was except a person keeping her from tearing the mask off anew.
On vent assisted oxygen once more, her color crept slowly from purple to pink, her sats rising into the upper seventies. Intelligence and the Margret I knew leaked back into her eyes. I kept talking to her, and she stopped fighting to free her hands.
Time from ripping the mask off and flinging it to being back behind the blue mask perhaps 30 seconds, maybe less.
Mom's terror, TOTAL.
Someone asked if I was OK. I said yes. The shaking didn't start until after it was all over and I had stepped out into the hall. Marg's nurse asked me if I was OK, and I said, "No, but give me a little time."
Later, talking to Margret's doctor, I learned that her sats had fallen to 36. Yup. Terror. Yes, I tend to hold it all together when the chips are down. I'll have my meltdown later, when it's safe to do.
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