Tuesday, June 26, 2012
Monday, June 25, 2012
Rough night
Eve had a rough night last night. We had to go into her room 10 times throughout the night. She was crying out in what sounded like pain. When we'd go into her room, she would be so tight with her one leg jacked up. We couldn't straighten her leg, it was locked in a bent position. We gave her motrin, but it didn't make a difference. We tried everything: holding her and rocking her until she relaxed, talking sternly, comforting, you name it. I even laid in bed next to her. She wouldn't cry when we were in the room. After she relaxed, we could leave the room, but 5-60 minutes later she would be crying again. She was pretty hot yesterday and I don't think she got enough to drink (I forgot her second serving of water through her g-tube), so maybe she was dehydrated. Jim also wondered if she was scared. He took her to a Chinese Festival at the Clark yesterday and said that the street performers were pretty scary and she did NOT like them. We finally gave up at 4am and Jim slept in her bed with her. She never made a sound after that. I actually had to wake her up this morning. We will see how tonight goes. It's cooler and I will not forget her second tube water (in addition to what she usually takes by mouth).
Having a non-verbal child in distress may be one of the most frustrating things on the planet. I have never felt so helpless.
Having a non-verbal child in distress may be one of the most frustrating things on the planet. I have never felt so helpless.
Wednesday, June 20, 2012
Boston Trip
Yesterday we had our annual trip to Boston. Eve had appointments with her mito doc and the physiatrist. I've been totally stressed out over this trip. As usual, it went better than I expected. We gave Eve some anti-anxiety medicine before the trip. She did extremely well in the car ride out and even seemed excited for the trip (we kept promising we would eat in the restaurant at the hospital). We hit traffic and were actually about 10 minutes late for the appointment (I had factored in an extra hour in travel time), but that was okay. The doctor was running late by over an hour.
So, first we saw the Physiatrist. We explained how Eve had had those periods of night waking and seemed cramped up. We had wondered if she has increased spasticity. He said she doesn't - that it's dystonia. So previously discussed Botox shots to her muscles are off the table. Instead, he thought it would be beneficial to examine other causes of discomfort that could cause her periods of tensing and pain. He recommended that we talk to her GI doc about getting her esophagus looked at for damage from her acid reflux. That is something that will get worse at night (from laying down) and could certainly be affected by her mito (because the valve at the top of the stomach might be weak). So he thinks it's beneficial for her to get a scope. Second, he also recommended that she see a pediatric urologist in Boston. He said there are three main types of bladder problems (e.g., a spastic bladder) and they can cause discomfort and would be worth checking Eve out for. I do not look forward to another trip to Boston, but we are going to look into this.
We then had about a half hour left before the mito appointment so we headed over to the lab to have her blood drawn. The mito doc had a series of things he wanted to look for. We went in after the most dramatic 10-year old ever. We could hear him moaning, "OH GOD, NO!!!!! DON'T DO IT!!! TAKE IT OUT!!!!" It was unreal and so bad it was actually comical. I thought it would freak Eve out. However, she was happy as could be and never made a sound when they drew her blood (even though the phlebotomist had to dig around for her vein). It was amazing. I love her anti-anxiety med. What a difference.
Then it was on to the mito doc. He asked us lots and lots of questions and typed in his computer. He asked if she had any gains since last year and we said no - she's worse on some things (e.g., she seems more distant and takes much longer to answer questions). He wants her eyes examined and a cardiac evaluation. He wants us to increase the fluid we give her in her g-tube. I asked about her mito. She's never been definitively diagnosed. She has mitochondrial dysfunction, but since the actual location of the mutation hasn't been found, we don't know if it's primary dysfunction or secondary to some other disease. So, he ordered chromosomal microarray to look into it. That meant another blood draw. Eve was great for that, too. No crying. Amazing. As for genetic testing looking for the mDNA mutation, he suggests we wait a while. The lab they had been working with had terrible customer service and was taking about a year to get results back. He said that the longer we wait the more the labs will be able to test and the cheaper it will be (rather than $17k) due to increased competition. So, we are going to hold off on that and just stick with the other testing for now. It won't change her treatment, but we might be eligible for clinical trials if we have a definitive diagnosis.
They also had to catheterize her for a urine sample. I was positive she had a UTI (smelly pee and seemed to have these waves of pain that would pass after a few moments), but when I called today the test came back negative. I'm stumped. I felt sure she had a UTI. She had another episode after dinner tonight of pain. If the smell continues and the pain as well, I'll take her to the pediatrician to maybe take another urine sample.
The trip home was uneventful. She was uncomfortable and tired, but pretty good the whole way. We were so happy to be home and soooooo grateful to my parents for taking care of Seamus. I just realized I never took a picture of my parents with the kids. Darn.
So, first we saw the Physiatrist. We explained how Eve had had those periods of night waking and seemed cramped up. We had wondered if she has increased spasticity. He said she doesn't - that it's dystonia. So previously discussed Botox shots to her muscles are off the table. Instead, he thought it would be beneficial to examine other causes of discomfort that could cause her periods of tensing and pain. He recommended that we talk to her GI doc about getting her esophagus looked at for damage from her acid reflux. That is something that will get worse at night (from laying down) and could certainly be affected by her mito (because the valve at the top of the stomach might be weak). So he thinks it's beneficial for her to get a scope. Second, he also recommended that she see a pediatric urologist in Boston. He said there are three main types of bladder problems (e.g., a spastic bladder) and they can cause discomfort and would be worth checking Eve out for. I do not look forward to another trip to Boston, but we are going to look into this.
We then had about a half hour left before the mito appointment so we headed over to the lab to have her blood drawn. The mito doc had a series of things he wanted to look for. We went in after the most dramatic 10-year old ever. We could hear him moaning, "OH GOD, NO!!!!! DON'T DO IT!!! TAKE IT OUT!!!!" It was unreal and so bad it was actually comical. I thought it would freak Eve out. However, she was happy as could be and never made a sound when they drew her blood (even though the phlebotomist had to dig around for her vein). It was amazing. I love her anti-anxiety med. What a difference.
Then it was on to the mito doc. He asked us lots and lots of questions and typed in his computer. He asked if she had any gains since last year and we said no - she's worse on some things (e.g., she seems more distant and takes much longer to answer questions). He wants her eyes examined and a cardiac evaluation. He wants us to increase the fluid we give her in her g-tube. I asked about her mito. She's never been definitively diagnosed. She has mitochondrial dysfunction, but since the actual location of the mutation hasn't been found, we don't know if it's primary dysfunction or secondary to some other disease. So, he ordered chromosomal microarray to look into it. That meant another blood draw. Eve was great for that, too. No crying. Amazing. As for genetic testing looking for the mDNA mutation, he suggests we wait a while. The lab they had been working with had terrible customer service and was taking about a year to get results back. He said that the longer we wait the more the labs will be able to test and the cheaper it will be (rather than $17k) due to increased competition. So, we are going to hold off on that and just stick with the other testing for now. It won't change her treatment, but we might be eligible for clinical trials if we have a definitive diagnosis.
They also had to catheterize her for a urine sample. I was positive she had a UTI (smelly pee and seemed to have these waves of pain that would pass after a few moments), but when I called today the test came back negative. I'm stumped. I felt sure she had a UTI. She had another episode after dinner tonight of pain. If the smell continues and the pain as well, I'll take her to the pediatrician to maybe take another urine sample.
The trip home was uneventful. She was uncomfortable and tired, but pretty good the whole way. We were so happy to be home and soooooo grateful to my parents for taking care of Seamus. I just realized I never took a picture of my parents with the kids. Darn.
Saturday, June 16, 2012
Saturday, June 2, 2012
little dreamer
Let me clarify that I am not shaking his exersaucer. That is him jumping in his sleep.
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