Following is a series of cuts from various emails I have sent out over the last few days regarding Paul's very rapidy deteriorating condition. The picture of Paul feeding the ducks was taken at the Wild Animal Park in May 2004. He is weaing his Angel's baseball cap that he got at the Angel's game a few days earlier.
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June 27, 2007
My son Paul seems to have taken a turn for the worse. You may remember he has PsA which was diagnosed in January of 2004. It has rapidly progressed. He cannot walk unaided talk or even hold a fork in his hand. We thought it could get no worse but it has. This last Sunday it started to affect his chest wall muscles. He has had several bad nights struggling to breathe. During the day his breathing is just ok, but at night he gets air starved and wakes up repeatedly.
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My son Paul seems to have taken a turn for the worse. You may remember he has PsA which was diagnosed in January of 2004. It has rapidly progressed. He cannot walk unaided talk or even hold a fork in his hand. We thought it could get no worse but it has. This last Sunday it started to affect his chest wall muscles. He has had several bad nights struggling to breathe. During the day his breathing is just ok, but at night he gets air starved and wakes up repeatedly.
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June 28, 2007
It is 4 in the morning, Paul is bravely trying to lay down and let his mother sleep a little. His breathing is worse. All he can take is the shallow breaths because of the pain in the tendons or muscles of his chest wall. He doses then wakes up with air hunger. I feel like I am watching someone die. He has not been able to eat since breakfast yesterday. Each time he swallows he has to briefly hold his breath than breathe in sharply after. He is no longer capable.
I have never known Paul to complain without a reason. Usually he says nothing until he is in extreme trouble. It was that way when he contracted a whooping cough strain (age 9) that was not protected by vaccination. The pulmonary pediatric specialist who examined him was amazed he was functioning on so little lung capacity. Yet he never complained. He just went pale and white when he coughed.
I no longer can understand his very faint mouth movements or tiny, tiny whispers. His mother, Margaret was trained in signing and lip reading. She can still read his lips. He is now for the first time ever in his life saying to her “Mommy make it better” She is torn up. She says I would do anything if I could. I never heard him once ever say anything like that in his life before—not for pertussin, not for severe chicken pox. Not for any of his asthma attacks.
Margaret can not do anything for him. I have lied to her and said there is hope. We kept hoping Paul would get better, maybe this was asthma and would go away with time. Paul indicated no he did not think it was asthma. Each day but we kept thinking it would be better tomorrow. But it has not gotten better only worse.
I saw Paul’s grandfather in his last hours at age 87. He looked better than Paul does now. He could breathe. He could take in fluids. We and especially Paul have tried so hard to keep him out of the hospital. A chest cold with the current stiffness and soreness in his chest muscles would cause incredible pain. I feels like we are going to lose the battle to kep him out of the hospital.
It is 4 in the morning, Paul is bravely trying to lay down and let his mother sleep a little. His breathing is worse. All he can take is the shallow breaths because of the pain in the tendons or muscles of his chest wall. He doses then wakes up with air hunger. I feel like I am watching someone die. He has not been able to eat since breakfast yesterday. Each time he swallows he has to briefly hold his breath than breathe in sharply after. He is no longer capable.
I have never known Paul to complain without a reason. Usually he says nothing until he is in extreme trouble. It was that way when he contracted a whooping cough strain (age 9) that was not protected by vaccination. The pulmonary pediatric specialist who examined him was amazed he was functioning on so little lung capacity. Yet he never complained. He just went pale and white when he coughed.
I no longer can understand his very faint mouth movements or tiny, tiny whispers. His mother, Margaret was trained in signing and lip reading. She can still read his lips. He is now for the first time ever in his life saying to her “Mommy make it better” She is torn up. She says I would do anything if I could. I never heard him once ever say anything like that in his life before—not for pertussin, not for severe chicken pox. Not for any of his asthma attacks.
Margaret can not do anything for him. I have lied to her and said there is hope. We kept hoping Paul would get better, maybe this was asthma and would go away with time. Paul indicated no he did not think it was asthma. Each day but we kept thinking it would be better tomorrow. But it has not gotten better only worse.
I saw Paul’s grandfather in his last hours at age 87. He looked better than Paul does now. He could breathe. He could take in fluids. We and especially Paul have tried so hard to keep him out of the hospital. A chest cold with the current stiffness and soreness in his chest muscles would cause incredible pain. I feels like we are going to lose the battle to kep him out of the hospital.
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June 30, 2007
Paul is back home from the hospital. He has inflammation of the lungs or tissue surrounding the lungs. The only treatment is inflammatories which give him quick severe asthma. There was nothing more hospital could do. >
His oxygen level is good but his problems expelling air make the CO2 level higher than his body likes. As you may know the body only senses CO2 not O2, so it constantly tells Paul he is suffocating even though he has enough O2.
He was better at hospital an able to sip some water and eat a few bites of pineapple, his only food today. Each time he swallows it hurts and feels like he is suffocating. He says, "remember the good times when I could breathe?"
We are upping the frequency of doses of his Enbrel. We will make an appointment with a rheumatologist to discuss a Rituxan transfusion, if all else fails. It is very expensive and risky as Rituxan is contains a lot of mouse protein. Seventy percent of patients experience reactions to the infusion. Rituxan is a back up plan due to the risks.
Paul is still quite miserable, but he is so tough. He deeps thinking about others more than himself--Mom the at me.What a man.
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July 1, 2007
Paul had a much better night last night and slept several hours. He still feels like he is suffocating because he can no longer expand his chest due to inflammation. He is going to have to learn to breathe using only his diaphragm muscles.
I have had broken ribs. I know how sore they can be especially at night. There is no way to sleep on the side with the broken rib. Even little body shifts while sleeping cause intense pain that wakens you. Not at all fun. I believe Paul is having similar kind of pain now due to broken ribs on both sides. But the good news is he did sleep some. We all finally got some sleep.
He has also been able to drink water this morning and take down about a cup and a half of ice cream and yogurt. That is the most he has been able to eat since last Wednesday at lunch.
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July 4, 2007
Paul only slept three hours last night. His breathing is better but he is wracked with pain. His sternum, wrists especially the left one, his frozen neck, his Achilles tendon left leg, and back constantly ache. There is little relief even with medication.
Good news is this morning he was able to eat about a cup of oatmeal and a whole nectarine. Of course it was cut into tiny pieces. Also good he has been able to regained use of his hand again to lift a plastic food to his mouth. He was able to feed himself today. He still cannot chew as the tendons of the muscle extending from his cheek bone to lower jaw are being affected.
Below his cheek bone is sore and swollen. His jaw now locks up for the first time ever. He is very sore in the sternum area and each swallow of food leaves him breathless as the food passes the sternum on the way to the stomach.
Good news is this morning he was able to eat about a cup of oatmeal and a whole nectarine. Of course it was cut into tiny pieces. Also good he has been able to regained use of his hand again to lift a plastic food to his mouth. He was able to feed himself today. He still cannot chew as the tendons of the muscle extending from his cheek bone to lower jaw are being affected.
Below his cheek bone is sore and swollen. His jaw now locks up for the first time ever. He is very sore in the sternum area and each swallow of food leaves him breathless as the food passes the sternum on the way to the stomach.
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