I don't get seriously sick a lot. I better knock on wood when saying that, as that is what I used to say about Janey. This winter hasn't been an easy one health-wise, and last week it was my turn. Starting about last Sunday night, I had a fever that got progressively worse, lots of coughing and all out body aches. On Wednesday I finally gave in and went to the doctor (thank you, Maryellen, for getting me there, literally and figuratively!) and a chest x-ray showed I had pneumonia. The doctor was quite sure I also had the flu, but because of my probable Sjogren's Syndrome, he wasn't able to get a swab for that. Either way, I was pretty ill. He gave me antibiotics and said to stay home and stay resting for at least 5 days, although I'd probably be tired and recovering well past that.
Today's been 5 days, and I do feel much, much better. Still very tired, and doing any little thing makes me need to take a nap, but so much better that is makes it almost worth being sick, to remember how good well feels.
The big, huge thank you here goes to Tony, for taking over all of my Janey duties. Being sick in bed with a child like Janey in the house is not easy. Last Monday, before we realized how sick I was, I got Janey off the bus, around 3, and took care of her until 4:30 when Tony got home. That hour and a half was about enough to do me in. It made me realize what a house of cards we live in. Janey needs full time supervision, every second, still now, even though it's easier than it was a few years ago. But with me barely able to move, she made a wreck of the kitchen getting some of her favorite unconventional snacks---things like ketchup and romano cheese and duck sauce. She came off the bus wet, which isn't common, so I changed her, which took almost all I had. Then within a few minutes she was wet again---another change. Then she had a toileting accident of the other kind---lots of cleaning up. I felt like I was going to collapse, and I did, when Tony got home.
The rest of the week, Tony just took over. He got her on the bus in the morning, which involves dressing her, giving her medication, brushing her hair and teeth, getting her something to eat (they have breakfast at school, but we always feed her at home too as she doesn't eat well at school), making sure her backpack is set, waiting for the bus with her---all that while he was getting ready for work himself. Then he came home early each day to get her back off the bus, took care of all her afternoon and evening needs, made supper for her and us...did it all.
My thought all week was how much I admire single parents of kids like Janey. I won't say what I've sworn never to say---"I don't know how you do it"---but I will say you are incredible for doing it. And that I hope you get support, and I wish I had millions of dollars to help you, or at least time to give you respite. Parenting kids like Janey is at least a two person job.
How did Janey take my illness? Quite well, actually. One thing that was kind of neat is I got a little of the Daddy treatment. Seeing me, after Tony got her off the bus and fed her and so on, seemed like a huge treat for her. I haven't really gotten that in the past. She came into the bedroom and had a huge smile on her face, and gave me a big, big hug. She was excited when I could haul myself over to snuggle with her on her bed. She was actually a sweetheart all week. If it had been a tougher week for her, as so many weeks are...well, I'm glad it wasn't.
I've got to sort out in my mind some realizations from this week. Mostly, I have to think about how easily everything could fall apart. If either Tony or I started to become more disabled from the health issues we already have, it's hard to picture how we would be able to take care of Janey. And the truth is, we will, at some point. Even without our on-going health issues, we are getting older. But as we've found so often, there's not a lot out there to help. We are grateful, as we always are, for her school. Tony couldn't have worked at all last week without school. I think next year I have to bite the bullet and find some kind of afterschool that works, if possible. And we have to start looking for that needle in a haystack, perhaps---some way to get Janey more care when she is an adult and we are...older too.
For now, I'm just happy to be on the mend. I will be glad when this winter is over!
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label pneumonia. Show all posts
Showing posts with label pneumonia. Show all posts
Sunday, January 31, 2016
Friday, January 15, 2016
Grateful as well as angry --- a pneumonia story
It's Friday morning, and Janey is home and fever-free, and I am finally sitting down to try to make sense of the last few days.
When I last wrote, Monday, we had been through a clinic visit and an ER visit, without any answers. Another clinic visit Monday night, another temp at a low point just then, another wait and see. Janey's fever kept getting higher as Tuesday rolled along, even with Tylenol. She had an appointment set up for 3:45 at the clinic, but when I took her temp, it was again showing up as 106. I called the clinic and asked if we could be seen sooner, and they said to come right in.
Finally, we saw Janey's own pediatrician, a doctor I like more every day. Before she came in, the medical assistant took Janey's temp under her arm, and it showed up at 99, which I knew was not accurate. Janey was screaming and moving around. Then a couple people came in and took a nasal swab for flu. Again, we had to hold her down. When Janey's doctor came in, I pulled out the crazy old forehead thermometer and took Janey's temp again---and again, it showed 106. The doctor was startled. We all agreed it was probably reading a little high, but at her request I took my own temp with it and that was normal. She then took Janey's underarm temp, with us all holding her down, and it showed 103, which translates to 104 as you add a degree for under the arm. Finally, someone was seeing that Janey really did have a high fever.
At this point, Janey's skin looked odd---mottled and pale. She was coughing an increasingly deep cough. The pediatrician made the call to have her taken to the ER by ambulance. As we were waiting for transport, the flu swab came back, positive for influenza type A and B---both types. The ambulance showed up and we took a siren-filled ride to Mass General. Freddy was with us, and he rode in the front.
So---back to the old Mass General ER, site of absolutely no help the previous Saturday night. But I knew it was the gateway to great care, if we got admitted. The plan initially was not for that, though. A hugely arrogant seeming doctor came in, announced he was the "big boss" and did a quick exam of Janey, and left saying in a sing-song voice "not so bad, not so bad" The plan was to have a chest x-ray, give her some fluids, do some blood work and send her home.
Janey cooperated for the chest xray in a way that was truly amazing. She had to do things like hold onto a bar above her head and lean forward and scoot up on the bed, and she did all of them. I was shocked at her understanding and cooperation. The chest xray came back showing she had pneumonia in her lower left lobe. The blood work showed a low white blood cell count. And after a change of shift to a different "big boss", Janey's fever started to come back up. She was shaking violently. It wasn't time for more Tylenol or Motrin yet. And finally, around 9, we were told she would be admitted.
It took until about midnight to get into a room. The time in the ER felt like purgatory. Freddy left around 5, Tony got there around 7, but there was only one chair in the room, and he had barely slept the night before and worked all day, so he went to the car to sleep. He came back in around 10 as we waited for a room. Janey was looking sicker and sicker. Finally, we were taken up to our room.
Going back to the pediatric floor felt bizarre. We had spent nearly a month there last May with Janey's burst appendix. It felt like a homecoming in a way, one we had never wanted to come back home to, but I knew finally we would get some good help.
That night, Janey's fever spiked very high again. She was put on IV antibiotics. The next day, we were able to talk for quite a while to the same doctor that had been the one who broke the news to me that Janey's appendix had burst, last May. He, as well as everyone there, was great---listening to us, being respectful and kind to Janey, taking into consideration her autism at all turns and giving her wonderful care. Finally, on Wednesday afternoon, she had her last fever. Yesterday, it was decided what antibiotic to send her home on (one that says in the instructions "used to treat a variety of bacteria infections as well as anthrax and the plague", so it's pretty hard-core!) and in the afternoon, with Janey looking incredibly better, we were released. Strangely, when they had repeated twice the flu swap, it came out completely negative, so the conclusion was she had some unknown viral infection, but the main problem was the pneumonia.
I have been thinking non-stop why, even after the whole appendix ordeal, it took from Saturday till Tuesday for Janey to get effective care for a very high fever and pneumonia. Part of it is just that I've realized it often takes anyone a while to get treated. So many illnesses resolve on their own, and I almost feel like it's a plan in the medical world to let things ride a bit and see if they get better. But part of it is her autism. I pinned it down to two crucial events/reasons...
The first was the Saturday visit to the urgent care clinic, when Janey resisted her temperature being taken under her arm and the decision was made to not take her temp at all. I KNOW her temp was extremely high then. Her pulse was 250, which even if that was somehow off a little, is extremely high, and she felt to be burning up. In defense of the doctor that saw her there, she did realize Janey was pretty sick, and put her on antibiotics (ones that weren't strong enough for pneumonia, we were later told, but would have treated strep throat) But I think if she had had a good temp taken, it would have shown a high enough temp that we would have been sent to the hospital then. The feeling was---don't force her to get her temperature taken and "upset" her. Well, that is my fault. I knew it needed to be taken, but I didn't insist. We all fall victim to not wanting to upset her. But---the same standard has to be used for Janey's medical care as any other child's care. If someone shows signs of a terrible fever, they NEED to have their temperature taken. Maybe not at home, but it needs to be taken in a medical office, and recorded. That was the first fail.
The second fail was the first ER visit. What a joke that visit was. Janey's fever was down, and I was not listened to. I tried my damnest to voice that Janey does not show illness or pain normally. I wanted blood done, I wanted a chest xray. But the arrogant doctor (a different arrogant doctor than the second time), despite what I was saying and despite the fact that the ER last May had missed the first time a burst appendix, which you would think would make them extra careful, seemed to assume that I was being an anxious parent, that Janey was just plain fine. That is where the autism comes in. Janey was ACTING fine. A typical kid of 11, after being terribly sick all day, would be able to explain how she felt, how her lungs felt, how scared she was. But Janey, when she felt better, acted fine. She wasn't feeling hugely sick right then, and she has no understanding that that might be a temporary lull. And I didn't press hard enough, I guess. So---it took from Saturday until Tuesday night for her to finally get the right antibiotics to start truly helping her.
I am left feeling a few things. One is angry. I am angry that yet again, Janey's autism prevented her from getting timely care. Another is grateful. We love Janey's new pediatrician, and once she was able to see how sick Janey was, she acted very quickly. She communicated with the hospital and with me, and she was firm in what she said Janey needed. We are also grateful for the wonderful care on Ellison 18, the pediatric ward at Mass General. Many of the doctors and nurses remembered Janey well from her last visit! It was great to have Daisy as a nurse again (shout out to you, Daisy, who sometimes reads my blog!) and the other terrific nurses. We hope we'll never be admitted to a hospital again, but if we are, it will be Mass General, even if we aren't crazy about the ER.
And now, a day of rest. Tony is home to help with Janey---another week of mostly missed work for him, but luckily he has enough time saved up. I could write on with more and more thoughts and happenings of the last few days, but for now, I'll close, and take another nap. And thank all of you for your kindness on the Facebook page---your thoughts, prayer and comments are what keep us going a lot of dark days.
When I last wrote, Monday, we had been through a clinic visit and an ER visit, without any answers. Another clinic visit Monday night, another temp at a low point just then, another wait and see. Janey's fever kept getting higher as Tuesday rolled along, even with Tylenol. She had an appointment set up for 3:45 at the clinic, but when I took her temp, it was again showing up as 106. I called the clinic and asked if we could be seen sooner, and they said to come right in.
Finally, we saw Janey's own pediatrician, a doctor I like more every day. Before she came in, the medical assistant took Janey's temp under her arm, and it showed up at 99, which I knew was not accurate. Janey was screaming and moving around. Then a couple people came in and took a nasal swab for flu. Again, we had to hold her down. When Janey's doctor came in, I pulled out the crazy old forehead thermometer and took Janey's temp again---and again, it showed 106. The doctor was startled. We all agreed it was probably reading a little high, but at her request I took my own temp with it and that was normal. She then took Janey's underarm temp, with us all holding her down, and it showed 103, which translates to 104 as you add a degree for under the arm. Finally, someone was seeing that Janey really did have a high fever.
At this point, Janey's skin looked odd---mottled and pale. She was coughing an increasingly deep cough. The pediatrician made the call to have her taken to the ER by ambulance. As we were waiting for transport, the flu swab came back, positive for influenza type A and B---both types. The ambulance showed up and we took a siren-filled ride to Mass General. Freddy was with us, and he rode in the front.
So---back to the old Mass General ER, site of absolutely no help the previous Saturday night. But I knew it was the gateway to great care, if we got admitted. The plan initially was not for that, though. A hugely arrogant seeming doctor came in, announced he was the "big boss" and did a quick exam of Janey, and left saying in a sing-song voice "not so bad, not so bad" The plan was to have a chest x-ray, give her some fluids, do some blood work and send her home.
Janey cooperated for the chest xray in a way that was truly amazing. She had to do things like hold onto a bar above her head and lean forward and scoot up on the bed, and she did all of them. I was shocked at her understanding and cooperation. The chest xray came back showing she had pneumonia in her lower left lobe. The blood work showed a low white blood cell count. And after a change of shift to a different "big boss", Janey's fever started to come back up. She was shaking violently. It wasn't time for more Tylenol or Motrin yet. And finally, around 9, we were told she would be admitted.
It took until about midnight to get into a room. The time in the ER felt like purgatory. Freddy left around 5, Tony got there around 7, but there was only one chair in the room, and he had barely slept the night before and worked all day, so he went to the car to sleep. He came back in around 10 as we waited for a room. Janey was looking sicker and sicker. Finally, we were taken up to our room.
Going back to the pediatric floor felt bizarre. We had spent nearly a month there last May with Janey's burst appendix. It felt like a homecoming in a way, one we had never wanted to come back home to, but I knew finally we would get some good help.
That night, Janey's fever spiked very high again. She was put on IV antibiotics. The next day, we were able to talk for quite a while to the same doctor that had been the one who broke the news to me that Janey's appendix had burst, last May. He, as well as everyone there, was great---listening to us, being respectful and kind to Janey, taking into consideration her autism at all turns and giving her wonderful care. Finally, on Wednesday afternoon, she had her last fever. Yesterday, it was decided what antibiotic to send her home on (one that says in the instructions "used to treat a variety of bacteria infections as well as anthrax and the plague", so it's pretty hard-core!) and in the afternoon, with Janey looking incredibly better, we were released. Strangely, when they had repeated twice the flu swap, it came out completely negative, so the conclusion was she had some unknown viral infection, but the main problem was the pneumonia.I have been thinking non-stop why, even after the whole appendix ordeal, it took from Saturday till Tuesday for Janey to get effective care for a very high fever and pneumonia. Part of it is just that I've realized it often takes anyone a while to get treated. So many illnesses resolve on their own, and I almost feel like it's a plan in the medical world to let things ride a bit and see if they get better. But part of it is her autism. I pinned it down to two crucial events/reasons...
The first was the Saturday visit to the urgent care clinic, when Janey resisted her temperature being taken under her arm and the decision was made to not take her temp at all. I KNOW her temp was extremely high then. Her pulse was 250, which even if that was somehow off a little, is extremely high, and she felt to be burning up. In defense of the doctor that saw her there, she did realize Janey was pretty sick, and put her on antibiotics (ones that weren't strong enough for pneumonia, we were later told, but would have treated strep throat) But I think if she had had a good temp taken, it would have shown a high enough temp that we would have been sent to the hospital then. The feeling was---don't force her to get her temperature taken and "upset" her. Well, that is my fault. I knew it needed to be taken, but I didn't insist. We all fall victim to not wanting to upset her. But---the same standard has to be used for Janey's medical care as any other child's care. If someone shows signs of a terrible fever, they NEED to have their temperature taken. Maybe not at home, but it needs to be taken in a medical office, and recorded. That was the first fail.
The second fail was the first ER visit. What a joke that visit was. Janey's fever was down, and I was not listened to. I tried my damnest to voice that Janey does not show illness or pain normally. I wanted blood done, I wanted a chest xray. But the arrogant doctor (a different arrogant doctor than the second time), despite what I was saying and despite the fact that the ER last May had missed the first time a burst appendix, which you would think would make them extra careful, seemed to assume that I was being an anxious parent, that Janey was just plain fine. That is where the autism comes in. Janey was ACTING fine. A typical kid of 11, after being terribly sick all day, would be able to explain how she felt, how her lungs felt, how scared she was. But Janey, when she felt better, acted fine. She wasn't feeling hugely sick right then, and she has no understanding that that might be a temporary lull. And I didn't press hard enough, I guess. So---it took from Saturday until Tuesday night for her to finally get the right antibiotics to start truly helping her.
I am left feeling a few things. One is angry. I am angry that yet again, Janey's autism prevented her from getting timely care. Another is grateful. We love Janey's new pediatrician, and once she was able to see how sick Janey was, she acted very quickly. She communicated with the hospital and with me, and she was firm in what she said Janey needed. We are also grateful for the wonderful care on Ellison 18, the pediatric ward at Mass General. Many of the doctors and nurses remembered Janey well from her last visit! It was great to have Daisy as a nurse again (shout out to you, Daisy, who sometimes reads my blog!) and the other terrific nurses. We hope we'll never be admitted to a hospital again, but if we are, it will be Mass General, even if we aren't crazy about the ER.
And now, a day of rest. Tony is home to help with Janey---another week of mostly missed work for him, but luckily he has enough time saved up. I could write on with more and more thoughts and happenings of the last few days, but for now, I'll close, and take another nap. And thank all of you for your kindness on the Facebook page---your thoughts, prayer and comments are what keep us going a lot of dark days.
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