We almost managed to get away with just five surgical days, but there were too many cases and toward the end of the afternoon it became clear that some would need to wait until tomorrow. In the end, only three are on tomorrow's schedule, though it's possible another one or two of the standbys who live locally might be added. They are all shorter cases, lip scar revisions or follow-up nose surgery, so none will be longer than an hour or two, and all will be able to go home by the afternoon. We'll still need to go in early to discharge today's patients and to have enough time to pack up all the equipment.
I've posted a few more photos. There are some babies with tubes in their noses. One of the young surgeons from Guatemala uses them to support and shape the nasal cartilages. The parents can take them out to clean them an then put them back in. The babies wear them for two to four months and the surgeon says they make a big difference in how the noses look. I'll try to match up the pre and post op photos a bit more. There are also some photos of kids playing games while they wait for surgery. The Child Life team and volunteers have been great at keeping the kids busy and distracting those who are scared. Finally, there are photos of Kathy, (the nurse who wore princess and Turtle costumes and today was in a Superman costume,) and me kneeling in the hallway doing pre-op checks. It seems on all missions the parents and kids are in chairs and the nurse and I are on our knees on the floor.
There were some challenges today on the post-op ward. One 14 month old who had had palate surgery came back very sedated and had an oxygen saturation of 70, normal being around 95-98%. She'd been wild in the recovery room so they had given her a couple of doses of a pain medication that can cause sedation. Though she was OK when she left recovery, she became more sedated when she hit the ward. We kept her for about an hour with oxygen in our "crash bed," a bed we always keep by the nurses' station that's equipped for emergencies, but she was still out cold, so we took her back to the recovery room and let them keep her for awhile till she woke up.
A little later, another palate patient started to bleed. The palate is very vascular, and a bit of bleeding is common. We put pressure on the palate, rinse with ice water and even use tea bags, and generally the bleeding stops. This time, it continued through all our tricks, so we sent the patient back and the surgeon sewed a gauze pack into the palate. About an hour later, the father came to the desk and asked the nurse to come check his son. He wanted to know if the breathing was supposed to sound like it was. The baby was lying on his back making horrible strangling noises. He was struggling to breath around the pack which was now soaked with blood and swollen to three times it's starting size, filling his airway. The nurse sat the baby up, and the baby took in a huge gasping breath as the pack shifted forward out of his throat. She kept him that way while I called the surgeon who came down to the ward, cut the sutures and pulled out the pack. The pressure of the giant pack had stopped the bleeding, so all was well. Heh.
Yesterday there was a four year old who was supposed to have his palate done, but the dentists were also planning to do some fillings. When they got him under anesthesia and could do a good exam, they found that he had multiple abscessed teeth and they ended up having to pull 16 teeth!! They cancelled his palate surgery and put him on high dose Augmentin and sent the family to the shelter (housing we have at all missions for families from far away,) for a week to follow along and make sure he was getting better. Today he returned to the ward because the parents reported that he won't take the antibiotic because it tastes bad. He's feverish and miserable, of course, but I expect our nurses will get the antibiotic into him.
Though not quite as devastating as yesterday, I had another "the way it is" experience today. I was asked by Monica, one of the in-country coordinators if I would speak with the director of finances of the hospital. He has a friend who had come to see him today with her 14 year old daughter who has PKU (phenylketonuria.) PKU is a metabolic disorder where there is a problem metabolizing phenylalanine. It builds up in the blood and tissues and causes damage to the brain, among other things. Though not common, before newborn screening for PKU became routine, it used to be an uncommon but significant cause of mental retardation in the US. Once PKU is diagnosed, the buildup of phenylalanine and resultant retardation can be prevented by giving the baby a special low phenylalanine formula and later supplementing with a very selective diet. Unfortunately, Guatemala has no screening program and no source of the special formula. I went to the financial director's office and met the girl and her mother. If it weren't so sad, I might have seen it as a rare opportunity to see a patient with untreated PKU; there are physical characteristics that I had never seen before. However, after a brief introduction by the financial director, I mainly listened as the mother told her story.
Her daughter seemed normal at birth but fairly early she suspected something was wrong because she wasn't developing like her older sister. She took her to several physicians who initially reassured her and eventually told her that her daughter had autism. She accepted it for awhile, but when she noticed that her daughter had a slightly musty smell and that she had lighter hair and eyes than her sister, she started reading in the library and later online. Once she suspected a metabolic disorder, she tried to find a doctor who specialized in that area, but there isn't such a specialty in Guatemala. On her own, she narrowed it down to PKU and a couple of other things and finally found a doctor who would run the tests. Her daughter was 10 years old when she was finally diagnosed with PKU. By then, she had sustained significant brain damage and functions like a very young child. The mother is an expert on PKU. She has written to Abbot Labs trying to get their low phenylalanine formula for her daughter to no avail. She wanted to see me to see if I could facilitate a consultation between her doctor at the Hospitál InfantÃl and a specialist in the US and possibly assist in getting Abbot to donate formula.
In fact I, along with Operation Smile and the contacts they have with Abbot who supplies anesthetic for them, may be able to do all these things for this mother and child, and the mother will be able to stop doing everything herself with no support. If so, her child's damage will likely stop progressing, but it won't reverse. Unfortunately, the crucial time for treating PKU is the first year, and this girl has had 14 years of very high levels of phenylalanine. Unfortunately, she's not alone. Maritsa, the local pediatrician told me there is no screening and no treatment for PKU in Guatemala.
I've posted a few more photos. There are some babies with tubes in their noses. One of the young surgeons from Guatemala uses them to support and shape the nasal cartilages. The parents can take them out to clean them an then put them back in. The babies wear them for two to four months and the surgeon says they make a big difference in how the noses look. I'll try to match up the pre and post op photos a bit more. There are also some photos of kids playing games while they wait for surgery. The Child Life team and volunteers have been great at keeping the kids busy and distracting those who are scared. Finally, there are photos of Kathy, (the nurse who wore princess and Turtle costumes and today was in a Superman costume,) and me kneeling in the hallway doing pre-op checks. It seems on all missions the parents and kids are in chairs and the nurse and I are on our knees on the floor.
There were some challenges today on the post-op ward. One 14 month old who had had palate surgery came back very sedated and had an oxygen saturation of 70, normal being around 95-98%. She'd been wild in the recovery room so they had given her a couple of doses of a pain medication that can cause sedation. Though she was OK when she left recovery, she became more sedated when she hit the ward. We kept her for about an hour with oxygen in our "crash bed," a bed we always keep by the nurses' station that's equipped for emergencies, but she was still out cold, so we took her back to the recovery room and let them keep her for awhile till she woke up.
A little later, another palate patient started to bleed. The palate is very vascular, and a bit of bleeding is common. We put pressure on the palate, rinse with ice water and even use tea bags, and generally the bleeding stops. This time, it continued through all our tricks, so we sent the patient back and the surgeon sewed a gauze pack into the palate. About an hour later, the father came to the desk and asked the nurse to come check his son. He wanted to know if the breathing was supposed to sound like it was. The baby was lying on his back making horrible strangling noises. He was struggling to breath around the pack which was now soaked with blood and swollen to three times it's starting size, filling his airway. The nurse sat the baby up, and the baby took in a huge gasping breath as the pack shifted forward out of his throat. She kept him that way while I called the surgeon who came down to the ward, cut the sutures and pulled out the pack. The pressure of the giant pack had stopped the bleeding, so all was well. Heh.
Yesterday there was a four year old who was supposed to have his palate done, but the dentists were also planning to do some fillings. When they got him under anesthesia and could do a good exam, they found that he had multiple abscessed teeth and they ended up having to pull 16 teeth!! They cancelled his palate surgery and put him on high dose Augmentin and sent the family to the shelter (housing we have at all missions for families from far away,) for a week to follow along and make sure he was getting better. Today he returned to the ward because the parents reported that he won't take the antibiotic because it tastes bad. He's feverish and miserable, of course, but I expect our nurses will get the antibiotic into him.
Though not quite as devastating as yesterday, I had another "the way it is" experience today. I was asked by Monica, one of the in-country coordinators if I would speak with the director of finances of the hospital. He has a friend who had come to see him today with her 14 year old daughter who has PKU (phenylketonuria.) PKU is a metabolic disorder where there is a problem metabolizing phenylalanine. It builds up in the blood and tissues and causes damage to the brain, among other things. Though not common, before newborn screening for PKU became routine, it used to be an uncommon but significant cause of mental retardation in the US. Once PKU is diagnosed, the buildup of phenylalanine and resultant retardation can be prevented by giving the baby a special low phenylalanine formula and later supplementing with a very selective diet. Unfortunately, Guatemala has no screening program and no source of the special formula. I went to the financial director's office and met the girl and her mother. If it weren't so sad, I might have seen it as a rare opportunity to see a patient with untreated PKU; there are physical characteristics that I had never seen before. However, after a brief introduction by the financial director, I mainly listened as the mother told her story.
Her daughter seemed normal at birth but fairly early she suspected something was wrong because she wasn't developing like her older sister. She took her to several physicians who initially reassured her and eventually told her that her daughter had autism. She accepted it for awhile, but when she noticed that her daughter had a slightly musty smell and that she had lighter hair and eyes than her sister, she started reading in the library and later online. Once she suspected a metabolic disorder, she tried to find a doctor who specialized in that area, but there isn't such a specialty in Guatemala. On her own, she narrowed it down to PKU and a couple of other things and finally found a doctor who would run the tests. Her daughter was 10 years old when she was finally diagnosed with PKU. By then, she had sustained significant brain damage and functions like a very young child. The mother is an expert on PKU. She has written to Abbot Labs trying to get their low phenylalanine formula for her daughter to no avail. She wanted to see me to see if I could facilitate a consultation between her doctor at the Hospitál InfantÃl and a specialist in the US and possibly assist in getting Abbot to donate formula.
In fact I, along with Operation Smile and the contacts they have with Abbot who supplies anesthetic for them, may be able to do all these things for this mother and child, and the mother will be able to stop doing everything herself with no support. If so, her child's damage will likely stop progressing, but it won't reverse. Unfortunately, the crucial time for treating PKU is the first year, and this girl has had 14 years of very high levels of phenylalanine. Unfortunately, she's not alone. Maritsa, the local pediatrician told me there is no screening and no treatment for PKU in Guatemala.
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