Last weekend Eve lost her appetite and had a low grade fever. Monday she seemed better. Tuesday she was fussy and had little appetite and low grade fever. She even spit up a little, but I thought that was because she was eating in her stander with her bellyband on and had pressure on her tummy. After dinner she had massive diarrhea. Wednesday: very fussy and no appetite. Thursday: Less fussy and better (but not normal) appetite. Friday: Much better in morning. When Jim picked her up from daycare, the staff asked if we've been using the potty with Eve (We haven't lately) because she has been pointing to theirs and has had lots of dry diapers. We didn't think much of this. At dinner she was incredibly fussy. She wanted to eat, but cried when we brought her to the table. She wanted to drink, but cried when we offered her milk. She just wasn't happy with anything. We tried time outs, we tried consoling her, we tried Tylenol. Then we gave up and Jim held her while she struggled with her milk (more on that in a minute) and ate some mashed potatoes. When it was time for bed, Jim noticed that her diaper (which had probably been on for 4 hours) was bone dry. Now we started to worry. She missed 2 doses of her antibiotics (to prevent urinary infections) when she lost her appetite. What if her fussiness and non-wet diapers was a sign of something wrong? So we called the Dr. and he sent us to the ER. Because of her multiple medical issues, he didn't want to take the "wait and see" approach. So, they did some blood work and got a urine sample via cath(miserable experience for Eve). The blood was fine, and the urine was probably fine. There were some red and white blood cells in it, but under the limit of a Dx of infection. We talked about it with the ER doc and he suggested to treat her for a UTI until the urine culture comes back which will definitively tell us if she has a UTI. He felt it was better to treat her for an infection that she might not have, rather than not treat her for an infection that hadn't totally reared its ugly head. He gave her a dose of meds before we left and we picked up more at the pharmacy this morning. *sigh* She's still fussy today, but that could be because she was up until 1am last night (at the ER).
Back to the milk. So, I am pretty worried about this. One of the problems with the mito Dx is that we have to watch Eve for loss of skills or functioning - particularly when she gets sick. The way that I understand this (and I might be off the mark) is that if the cells are not producing the energy they should (which is the function of the mitochondria), they die. Enough cells die and you have system failure. Enough system failure and the individual dies. So, i guess when a mito person gets sick and they don't have the reserve energy to fight off the illness the way you or I would, then the person can backslide. So, Eve had the diarrhea on Tues night. Wednesday morning, I noticed that she had trouble using the straw to drink. She kept mouthing the straw and chewing it, but not really sucking anything up in it. I thought this was just because she was sick and weak. Well, she is still doing this. It's as if she has forgotten how to use the straw. When she does manage to get some liquid in her mouth, much of it dribbles right out. She clearly wants to drink, but has to work really hard and is struggling. Today at lunch I just poured her milk into a glass and let her drink it from that (with me holding it). She drank the whole glass. She had some appetite, but mostly wanted her milk. Soooo....I am wondering if the dry diapers are due to her not being able to ingest enough liquids. Perhaps some of the fussiness is due to frustration.
You know, you get this horrible diagnosis, but you manage to deal with it because nothing has changed. Well, now that I suspect this is a change, it makes it all so real. I don't want to watch my child slowly shut down. I don't want to spend my Friday nights in the ER because the smallest illness can be the biggest deal. I did not sign up for this. OK. enough pity party. When she wakes up from her nap we are taking her swimming. Hopefully it will be fun for all of us. I bought a little raft for her to float in, but I just read the Univ. pool guidelines and you can't bring that in. So, I guess we'll just save it for our visit to Grammie and Papa in August. I'll try to take pictures of her in her little halter-top Tankini, though.
Back to the milk. So, I am pretty worried about this. One of the problems with the mito Dx is that we have to watch Eve for loss of skills or functioning - particularly when she gets sick. The way that I understand this (and I might be off the mark) is that if the cells are not producing the energy they should (which is the function of the mitochondria), they die. Enough cells die and you have system failure. Enough system failure and the individual dies. So, i guess when a mito person gets sick and they don't have the reserve energy to fight off the illness the way you or I would, then the person can backslide. So, Eve had the diarrhea on Tues night. Wednesday morning, I noticed that she had trouble using the straw to drink. She kept mouthing the straw and chewing it, but not really sucking anything up in it. I thought this was just because she was sick and weak. Well, she is still doing this. It's as if she has forgotten how to use the straw. When she does manage to get some liquid in her mouth, much of it dribbles right out. She clearly wants to drink, but has to work really hard and is struggling. Today at lunch I just poured her milk into a glass and let her drink it from that (with me holding it). She drank the whole glass. She had some appetite, but mostly wanted her milk. Soooo....I am wondering if the dry diapers are due to her not being able to ingest enough liquids. Perhaps some of the fussiness is due to frustration.
You know, you get this horrible diagnosis, but you manage to deal with it because nothing has changed. Well, now that I suspect this is a change, it makes it all so real. I don't want to watch my child slowly shut down. I don't want to spend my Friday nights in the ER because the smallest illness can be the biggest deal. I did not sign up for this. OK. enough pity party. When she wakes up from her nap we are taking her swimming. Hopefully it will be fun for all of us. I bought a little raft for her to float in, but I just read the Univ. pool guidelines and you can't bring that in. So, I guess we'll just save it for our visit to Grammie and Papa in August. I'll try to take pictures of her in her little halter-top Tankini, though.
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