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....
Wednesday, August 15, 2012
Anna's Summer
Other than a long bout of stomach flu that kept the family in the house for most of July, we've had a healthful summer. Anna was the last to get the stomach flu and recovered the fastest. I was disappointed that the Lord did not see it fit to spare her the stomach flu but I was grateful for the quick recovery- it only lasted one night for her. Oh, and there was that cold that followed the stomach flu but Anna had it only mildly and with no antibiotics.
I'm a bit concerned about her sudden love of a certain dirt spot on the side of the house.... one that her brothers frequent. We took out our sandbox last spring and I passed up opportunities to go to the beach- trying to avoid the "CF germs", but there she is frolicking in the dirt and having a grand time of it. What can I do? Wash her hands and worry- I am very good at both of those things.
Other things that Anna is up to:
- Two of her favorite phrases are, "What's dis?" or "What's dat?"- very curious about the world.
- Her top pick is still "Elmo" for keeping her attention during the last part of therapy.
- She loves to go down in the basement and rock out to the oldies while jumping on the
mini-trampoline.
- She frequently requests "crayons". She got a hold of a marker today and tried it on the
upholstered chair and received a "talking to" and a time-out, neither of which she enjoyed
very much.
- She has been described as a "delight" by an unbiased grandparent.
- She has decided to start her "Terrible Twos" a little early by loudly yelling "no" and otherwise
trying to assert her way. But mostly she is agreeable and responds to suggestions with a cute
resounding, "OK!"
- Claims her dinner is over by announcing, "Anna full" and pushing her plate away. Of course,
she has hardly eaten anything, but nothing I can do or say will get her to eat more.
- If loudness is an indication of lung health, she must be doing ok.
Saturday, July 7, 2012
Throat Culture Results
The throat culture did not come back as I had hoped. It showed that Anna had a slightly elevated amount of the same staph that had been detected in her throat culture in January. The nurse explained that the April throat culture either didn't pick it up (apparently throat cultures are not an exact science) or that it is a new crop of staph. What was surprising though is that the doctor did not recommend putting her on an antibiotic at this time. He said that since she is not showing any signs of coughing or breathing issues that we could just keep an eye on her and let them know if she developed any symptoms. I appreciate his willingness to see if her body can deal with it on its own and not to medicate her unnecessarily.
On another note, her weight gain was fine, even slightly above her normal curve on the chart. Apparently she can survive on dairy and carbs alone. Although her future good health will depend on things like a balanced diet. (I just learned about a CF recipe web site.) We will keep offering the food and hoping she will eat it...someday.
On another note, her weight gain was fine, even slightly above her normal curve on the chart. Apparently she can survive on dairy and carbs alone. Although her future good health will depend on things like a balanced diet. (I just learned about a CF recipe web site.) We will keep offering the food and hoping she will eat it...someday.
Sunday, July 1, 2012
Update from Anna's Dad
Friday, June 22, 2012
Check up
Anna had a three month check up with the CF team yesterday. She is doing well and showing "no signs of lung disease" as the doctor put it. We will continue with once a day therapy as a preventative and maintenance. My biggest concern was her eating habits and whether she was gaining sufficient weight. Despite the fact that she only eats dairy and carbs - she gained the weight to keep her on track. We were told to keep introducing new foods or re-introducing those that she has rejected in the past in hopes she will try them and like them someday.... We will have to wait a week for the results of the throat culture which will indicate whether she has picked up the "CF germs" that I so desperately want to avoid.
Speaking of "CF germs", today we went on a walk around a beautiful pond. No longer content to stay in a stroller, she wanted to throw rocks into the water. I wanted to tell her "no" because I didn't want her to touch the wet soil around the lake. But how can I not let her throw stones when the rest of her siblings are? I resolved to wash her hands asap, but before I could she threw a fit (as I wanted to continue the walk and she wanted to continue throwing stones) and as she did she stuck both of her hands into her mouth! I was alarmed and angry, and desperate, and crushed, and fearful all at the same time. She cried the rest of the way around the lake path- and I felt like I wanted to as well.
Speaking of "CF germs", today we went on a walk around a beautiful pond. No longer content to stay in a stroller, she wanted to throw rocks into the water. I wanted to tell her "no" because I didn't want her to touch the wet soil around the lake. But how can I not let her throw stones when the rest of her siblings are? I resolved to wash her hands asap, but before I could she threw a fit (as I wanted to continue the walk and she wanted to continue throwing stones) and as she did she stuck both of her hands into her mouth! I was alarmed and angry, and desperate, and crushed, and fearful all at the same time. She cried the rest of the way around the lake path- and I felt like I wanted to as well.
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