Wednesday, September 26, 2012
Throat culture and update
The nurse was supposed to call me- but I ended up calling her. I remember her once telling me how families will anxiously call looking for the results of the throat cultures. No wonder, we want to know if there is anything in there eating at our childrens' lungs. Anna's culture came back with the same low level staph that she has had before. Again, the nurse said that it did not need to be treated at this time because it is not bothering Anna. Or is it? The nurse said that if Anna were to start coughing then we would get an antibiotic that would take care of the staph (luckily it is a type of staph that responds to antibiotics.) But Anna is coughing, sort of. Is it the staph? I talked to the nurse about Anna's coughing which is not getting better but not getting worse either. She said we should continue to monitor the cough, breathing rate, and Anna's behaviour and if anything changes for the worse then we would address it. So, we continue to hang out.
Wednesday, September 19, 2012
My Poor Beautiful Anna
Today was a rough day for Anna. My heart went out to her so many times.
She started the day by having a coughing fit at 5:20am that lasted for 20 min. That was the most she has coughed since she started last week- I guess we will end up getting that antibiotic after all. Sigh. I then had to wake her up to get her therapy done before school. I hate waking up a sleeping child but the therapy disrupts the whole school routine. Luckily, she took it in stride.
About an hour after breakfast she started to have pain in her tummy and felt very uncomfortable. She was constipated. Part of CF is difficulty regulating the excretory system. Anna has had a lot of issues with this and goes from hard, painful stools to overly loose stools sometimes within a single day. A lot has to do with the dosage of her enzymes but also liquid intake and a couple of other factors. Yesterday she didn't go at all and I knew that meant that we were going to have a hard time today. I say "we" because I feel so badly for her that sometimes I cry right along side of her as I hold her little body and she tries to push. It is so awful. All morning she wanted to be held or she would be playing and then suddenly she would be crying. As her discomfort increased so did my concern. I finally gave her a suppository and within a minute she was successful. She cried. I cried.... not just because of her pain, but because I can't help think at these times that it is my fault that she has to deal with such hardship. My fault because I can't regulate her food/medicine etc. and my fault because I gave her CF. I guess I haven't gotten over the guilt yet.
An hour later we were getting ready to leave the house and she got her finger caught in a door when the wind blew it shut. You know when they open their mouth to scream and no sound comes out? That kind of pain. I felt so bad, after all she had already been through. It was bleeding around the nail and began to swell immediately. The rest of the day she held her hand up and treated it gingerly.
She got down late for her nap because we were out of the house at the regular time for nap. I had to wake her up a second time in one day so that she wouldn't sleep too late plus I needed to get in her afternoon therapy. Did I mention that I hate to wake a sleeping child?
Then came dinner. On the advice of the nutritionist, I was told not to give her milk with her meals so that she would fill her belly with real food. Well, dinner was the first meal I was trying this new routine. It didn't go over so good with Anna. The poor child asked for milk so many times. I offered her water. She begged for her enzymes because I usually follow the enzymes with milk to wash them down. I wouldn't give her the enzymes when she asked. She cried, she begged, I stayed strong. It was really hard... but she ate one of the best meals I have seen her eat in a long time!
My poor, beautiful Anna went to bed tonight with the same sweet kisses she always gives, waving to each of the kids as she was carried off to her bed. She weathered a difficult day and showed me what it means to endure.
She started the day by having a coughing fit at 5:20am that lasted for 20 min. That was the most she has coughed since she started last week- I guess we will end up getting that antibiotic after all. Sigh. I then had to wake her up to get her therapy done before school. I hate waking up a sleeping child but the therapy disrupts the whole school routine. Luckily, she took it in stride.
About an hour after breakfast she started to have pain in her tummy and felt very uncomfortable. She was constipated. Part of CF is difficulty regulating the excretory system. Anna has had a lot of issues with this and goes from hard, painful stools to overly loose stools sometimes within a single day. A lot has to do with the dosage of her enzymes but also liquid intake and a couple of other factors. Yesterday she didn't go at all and I knew that meant that we were going to have a hard time today. I say "we" because I feel so badly for her that sometimes I cry right along side of her as I hold her little body and she tries to push. It is so awful. All morning she wanted to be held or she would be playing and then suddenly she would be crying. As her discomfort increased so did my concern. I finally gave her a suppository and within a minute she was successful. She cried. I cried.... not just because of her pain, but because I can't help think at these times that it is my fault that she has to deal with such hardship. My fault because I can't regulate her food/medicine etc. and my fault because I gave her CF. I guess I haven't gotten over the guilt yet.
An hour later we were getting ready to leave the house and she got her finger caught in a door when the wind blew it shut. You know when they open their mouth to scream and no sound comes out? That kind of pain. I felt so bad, after all she had already been through. It was bleeding around the nail and began to swell immediately. The rest of the day she held her hand up and treated it gingerly.
She got down late for her nap because we were out of the house at the regular time for nap. I had to wake her up a second time in one day so that she wouldn't sleep too late plus I needed to get in her afternoon therapy. Did I mention that I hate to wake a sleeping child?
Then came dinner. On the advice of the nutritionist, I was told not to give her milk with her meals so that she would fill her belly with real food. Well, dinner was the first meal I was trying this new routine. It didn't go over so good with Anna. The poor child asked for milk so many times. I offered her water. She begged for her enzymes because I usually follow the enzymes with milk to wash them down. I wouldn't give her the enzymes when she asked. She cried, she begged, I stayed strong. It was really hard... but she ate one of the best meals I have seen her eat in a long time!
My poor, beautiful Anna went to bed tonight with the same sweet kisses she always gives, waving to each of the kids as she was carried off to her bed. She weathered a difficult day and showed me what it means to endure.
Tuesday, September 18, 2012
3 month check up
It was a timely appointment because Anna started to cough a bit about five days ago. Once again my heart sank though I know I should be grateful that we had such a healthy summer. ( I used to love when the weather would turn cooler, now I wonder if I will ever view the coming of fall the same way as I once did.) We monitored her coughs, gave her an antihistamine, took her breathing rate,and I prayed really hard that it would not turn into a chest cold. The cough has gotten no worse and no better. The doctor said her lungs were clear so now we wait and see what happens...
On another note, I talked to the nutritionist and the CF nurse at length about Anna's poorly balanced diet. Although she has gained sufficient weight on her all carb and dairy diet, she is not learning to eat from the other food groups. This has been worrisome to me for some time but I have been reluctant to push because I just want her to eat something. Well, it is time to play hard ball. It is time to train her to eat what is offered and that is going to mean some hungry days ahead for my beautiful little blondie. Please pray I can follow through with the suggestions given to me.
We await the result of her throat culture....
On another note, I talked to the nutritionist and the CF nurse at length about Anna's poorly balanced diet. Although she has gained sufficient weight on her all carb and dairy diet, she is not learning to eat from the other food groups. This has been worrisome to me for some time but I have been reluctant to push because I just want her to eat something. Well, it is time to play hard ball. It is time to train her to eat what is offered and that is going to mean some hungry days ahead for my beautiful little blondie. Please pray I can follow through with the suggestions given to me.
We await the result of her throat culture....
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