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| This kid is so classy, he makes scratching a mosquito bite look like art. |
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| This one is my ABSOLUTE favorite. |
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| Decorations for the party on Saturday. |
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| KayTar's pumpkin (Josh did the carving part) |
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| BubTar's self-designed pumpkin. |
Monday, October 31, 2011
Happy Halloween from the 'Tars!
Thursday, October 27, 2011
Notes from the Wobble Board.
KayTar is having a pretty good week. Monday and Wednesday she got through the entire school day without having to visit the nurse (except for her daily visit for meds and pump hook-up), and Tuesday there were some small bumps, but she made it through. She's flirting with a little respiratory infection, but doing well in spite of it.
In PT, KayTar had to stand on this thing called a wobble board, it was a wooden platform on top of a rounded rubber pillow of air that forced her to work VERY hard to maintain her balance. She would get up there and her legs would shake and her knees would buckle and she would grab onto her therapist for dear life. Lately, it seems like I'VE been on the wobble board. This semester has been stressful for me. I was chosen to be part of a STEM majors honor society at the end of last semester, which initially I thought was great. I was under the misconception that it was simply a scholarship program for impressive students (because that is all they tell you when applying!), but it turned out to be so much more than that. I had to sign up for an additional course, which was just one credit hour, and from there I found out that there were multiple mandatory events outside of class time. The society itself had something like 10 mandatory extracurricular events (the list just kept growing!) and the one hour course had several in addition to that. The class also required a lot of reading, online participation, and group work...it was my most demanding course and made Calculus look like a cakewalk. For a NORMAL undergraduate student, I can see the benefit of all of these things, but for me, especially THIS semester with the way things are with KayTar, it was impossible. A few weeks ago, I attempted to withdraw from the program, but my advisor said she was willing to compromise with me on certain things, so I tried to stick it out for the semester...but things just kept getting more complicated with KayTar and I just COULD NOT have that hanging over my head. So I finally officially withdrew last week and I feel so much better. I hate "quitting", but the truth is that if I had known about all of the hidden requirements when I applied, I NEVER would have applied. I am so careful about my schedule, because I know that there is a limit to what I can balance and I was even more careful this semester because this summer was rough for KayTar and we are seeing a lot of doctors and going through testing right now. This program tipped the scales in a dramatic way and withdrawing from it was the right call for me...and for us as a family. So, whew!
I'm not sure what I'm going to do about next semester. It has been a long time since Josh and I have really been hit by the uncertainty of raising a kiddo who has an undiagnosed, unpredictable disease, but this semester has really driven that point home once again. This summer was difficult, this semester has been difficult, and Josh and I are both concerned that next semester will be more of the same for her. We are thankful that her motility medication is helping and heartened by the good week she is having, but it seems like abdominal pain, headaches, dizziness, and other things are constantly lurking. We both hope this is just a flare up and we hope that she is on the upside of it now, but we can't say that with any certainty. Josh, who is extremely laid-back, brought up the possibility of home school last week, and he is NOT pro-home school. We're definitely not there yet, but the fact that he brought it up at all shows how uncertain things have been this year...how much our day to day with KayTar has shifted. As far as my school goes, if I had to decide right now, I'd say that it would probably be best for me to take next semester off or go back to evening classes for a while. When I decided to go to school full-time during the day, things were simpler with KayTar and it was an easier balance to maintain, but now everything is topsy-turvy again. School is important to me, but KayTar is my priority...she doesn't always need me, but I want to be there for her when she does. Luckily, I don't have to make any decisions right now...I just have to keep my head down and survive THIS semester (which in spite of all the extra stress, is going pretty well), because as my favorite Bible verse says, "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." And isn't that the truth!
In PT, KayTar had to stand on this thing called a wobble board, it was a wooden platform on top of a rounded rubber pillow of air that forced her to work VERY hard to maintain her balance. She would get up there and her legs would shake and her knees would buckle and she would grab onto her therapist for dear life. Lately, it seems like I'VE been on the wobble board. This semester has been stressful for me. I was chosen to be part of a STEM majors honor society at the end of last semester, which initially I thought was great. I was under the misconception that it was simply a scholarship program for impressive students (because that is all they tell you when applying!), but it turned out to be so much more than that. I had to sign up for an additional course, which was just one credit hour, and from there I found out that there were multiple mandatory events outside of class time. The society itself had something like 10 mandatory extracurricular events (the list just kept growing!) and the one hour course had several in addition to that. The class also required a lot of reading, online participation, and group work...it was my most demanding course and made Calculus look like a cakewalk. For a NORMAL undergraduate student, I can see the benefit of all of these things, but for me, especially THIS semester with the way things are with KayTar, it was impossible. A few weeks ago, I attempted to withdraw from the program, but my advisor said she was willing to compromise with me on certain things, so I tried to stick it out for the semester...but things just kept getting more complicated with KayTar and I just COULD NOT have that hanging over my head. So I finally officially withdrew last week and I feel so much better. I hate "quitting", but the truth is that if I had known about all of the hidden requirements when I applied, I NEVER would have applied. I am so careful about my schedule, because I know that there is a limit to what I can balance and I was even more careful this semester because this summer was rough for KayTar and we are seeing a lot of doctors and going through testing right now. This program tipped the scales in a dramatic way and withdrawing from it was the right call for me...and for us as a family. So, whew!
I'm not sure what I'm going to do about next semester. It has been a long time since Josh and I have really been hit by the uncertainty of raising a kiddo who has an undiagnosed, unpredictable disease, but this semester has really driven that point home once again. This summer was difficult, this semester has been difficult, and Josh and I are both concerned that next semester will be more of the same for her. We are thankful that her motility medication is helping and heartened by the good week she is having, but it seems like abdominal pain, headaches, dizziness, and other things are constantly lurking. We both hope this is just a flare up and we hope that she is on the upside of it now, but we can't say that with any certainty. Josh, who is extremely laid-back, brought up the possibility of home school last week, and he is NOT pro-home school. We're definitely not there yet, but the fact that he brought it up at all shows how uncertain things have been this year...how much our day to day with KayTar has shifted. As far as my school goes, if I had to decide right now, I'd say that it would probably be best for me to take next semester off or go back to evening classes for a while. When I decided to go to school full-time during the day, things were simpler with KayTar and it was an easier balance to maintain, but now everything is topsy-turvy again. School is important to me, but KayTar is my priority...she doesn't always need me, but I want to be there for her when she does. Luckily, I don't have to make any decisions right now...I just have to keep my head down and survive THIS semester (which in spite of all the extra stress, is going pretty well), because as my favorite Bible verse says, "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." And isn't that the truth!
Monday, October 24, 2011
I think we're getting there!
Since starting KayTar on Augmentin, she hasn't had any abdominal pain! Her current GI med/feed schedule looks like this:
5am: Nexium
6am: Augmentin + 6 ounce Pediasure (over 45 minutes)
11am: Augmentin + 8 ounce Pediasure (over 1 hour)
3:30pm: Augmentin + 8 ounce Pediasure (over 1 hour)
7pm: Nexium
8pm: Augmenin + 6 ounce Pediasure (over 45 minutes)
Actually, last night Josh forgot to adjust the dose on the pump, so she got 8 ounces at bedtime and it went well! We're keeping at the 6, 8, 8, 6 schedule for a couple more days and then we'll move up to all 8s and see how it goes. She is also eating pretty well (for KayTar), even her beloved meats are not causing pain. Thus far, I would say the Augmentin is a success and I hope that it continues to be helpful to her!
****
On the respiratory front, KayTar might be having her sleep study done this week IF the pulmonologist's office can actually get the orders sent out. One of the most frustrating aspects of having a medically-complex kid (aside from the way the new Zevex bags stick to the bottom of the spout and make me spill formula once a week, at least) is all the calls to physician's offices and schedulers to make sure orders get sent, received, and to the people they are supposed to get to so tests can be scheduled (or to make sure referrals are made or that lab results are received or that the medical supply company sends/receives updates prescription forms on time and so on ad nauseum). If you don't have experience with this little game, you would be SHOCKED to know how many times the ball gets dropped during the process. It seems very straight-forward; doctor writes an order, staff member faxes an order, scheduler receives an order, calls parent/patient to schedule. But it usually goes more like this, doctor writes order, forgets to sign order, parent calls office to check on order after a week, doctor supposedly signs order, order is supposedly faxed to scheduler, parent calls scheduler (another week later) who has not received the order, parent calls clinic to check on order, staff tells parent that order was faxed already, parent asks if they would mind refaxing it, parent calls scheduler to notify her that orders are coming, asks for a call back....and waits. Repeat calls daily until orders are received by scheduler. So, that is where we are now, but the scheduler told me that they have an open slot on Wednesday, so if the office gets the orders to the scheduler soon, KayTar will likely be having her study done this week. Fingers crossed!
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| In other news, BubTar finally decided on his costume: Dr. Who (the 10th) Isn't he cute?! |
Thursday, October 20, 2011
Good and Bad
Good:
We started KayTar on Augmentin for motility on Tuesday and since then, she hasn't complained of abdominal pain and she is back on 6 ounce bolus feeds. Yay! We are going to stay at 6 ounces for now and try to add in some meat (her favorite thing!) and see if she stays pain-free before trying to increase to 8 ounces.
Bad:
Yesterday, KayTar was complaining of being "spinny" at school. It was a persistent complaint and she didn't look quite right to the nurse at times, so she called me and I came up to observe her for a bit. She seemed okay for the most part, but once while we were talking she kind of crumpled in my lap and she grabbed her head and said, "Oh, it is worse!" Since spinny is a buzz-word for episodes, I erred on the side of caution, brought her home, medicated her, and tucked her in. She slept for a while and woke up feeling better.
This morning as I was leaving the kids' school, she was in the clinic again, complaining of being spinny. She tried to talk me into taking her home, but she seemed okay. I don't want to react prematurely and teach her that saying she is spinny will get her a ticket home. So I told her to put her head down at her desk if she feels spinny, or sit down if she is standing, and then check in with the nurse when it is her regular time to see her. Even though she seemed okay, I'm a little nervous about how the day will go. I'm about to head out to my history class...exam day...so hopefully everything will be smooth and we will both get through our respective school days.
- Posted using BlogPress from my iPad
We started KayTar on Augmentin for motility on Tuesday and since then, she hasn't complained of abdominal pain and she is back on 6 ounce bolus feeds. Yay! We are going to stay at 6 ounces for now and try to add in some meat (her favorite thing!) and see if she stays pain-free before trying to increase to 8 ounces.
Bad:
Yesterday, KayTar was complaining of being "spinny" at school. It was a persistent complaint and she didn't look quite right to the nurse at times, so she called me and I came up to observe her for a bit. She seemed okay for the most part, but once while we were talking she kind of crumpled in my lap and she grabbed her head and said, "Oh, it is worse!" Since spinny is a buzz-word for episodes, I erred on the side of caution, brought her home, medicated her, and tucked her in. She slept for a while and woke up feeling better.
This morning as I was leaving the kids' school, she was in the clinic again, complaining of being spinny. She tried to talk me into taking her home, but she seemed okay. I don't want to react prematurely and teach her that saying she is spinny will get her a ticket home. So I told her to put her head down at her desk if she feels spinny, or sit down if she is standing, and then check in with the nurse when it is her regular time to see her. Even though she seemed okay, I'm a little nervous about how the day will go. I'm about to head out to my history class...exam day...so hopefully everything will be smooth and we will both get through our respective school days.
- Posted using BlogPress from my iPad
Monday, October 17, 2011
A Halloween Joke from KayTar.
KayTar picked her Halloween costume yesterday, a skeleton. She was wearing it around the house yesterday, trying out different skeleton jokes so she would have some good lines for Halloween. At one point, we were shooing her out of the room to go play and she said, "Or I could go BONE myself! Get it?! BONE MYSELF?!" then she started laughing and pointing at her costume.
We almost DIED! We certainly got it, but she sure didn't!
We told her not to use that one for Halloween...I can just imagine her telling someone, "Give me some candy...or I'll BONE you!" Oh Lord...that kid is a hoot.
PS: She doesn't have a UTI (the culture was clean). She is still having near daily abdominal pain and she is down to 4 ounce feeds. I don't know what is going on, but we're going to try the motility meds starting tomorrow. I don't know what else to do for her.
We almost DIED! We certainly got it, but she sure didn't!
We told her not to use that one for Halloween...I can just imagine her telling someone, "Give me some candy...or I'll BONE you!" Oh Lord...that kid is a hoot.
PS: She doesn't have a UTI (the culture was clean). She is still having near daily abdominal pain and she is down to 4 ounce feeds. I don't know what is going on, but we're going to try the motility meds starting tomorrow. I don't know what else to do for her.
Sunday, October 16, 2011
Overheard at bedtime...
As KayTar and I cuddled in bed, the following conversation took place in whispered tones...
Me: Can I keep you forever?
KayTar: Yes.
(silence)
KayTar: But, I'm going to drive away someday.
(more silence)
KayTar: But, I'll come back...
(more silence)
KayTar: Because I don't plan on buying my own house.
Gosh, this kid makes me laugh.
Friday, October 14, 2011
I think this is what they refer to as "avoidance".
I could tell you about how KayTar's tummy still isn't doing well, or about how she has had abdominal pains several days in a row, or about how she vomited last night and again this morning and is home with me now so we can try to get her to tolerate clears and then maybe some formula, or about how I snuck into her room last night to pray over her because I'm not just worried about the tummy woes but about what all this might indicate for the future, or about how BubTar asked me this morning if there are other kids who have problems like KayTar and why the doctors can't figure out how to help her better...but instead, I'm just going to post some cute photos. I think that would be more fun for everyone involved. ;)
Afternoon update: KayTar's morning urine was cloudy, so we ran to Walgreen's for some test strips. I tested her urine and it was VERY positive for leukocytes. We went to see the pediatrician and verified that she has a UTI...her very first (that we know of). If I hadn't seen her morning urine (if she had flushed like she should have, LOL), I never would have guessed. She didn't have any typical symptoms, but I hope that once this is cleared up, maybe some of her recent issues will resolve, too. Fingers crossed! I'm actually a little relieved to discover she has *just* an infection! Here's to another round of Suprax.
Afternoon update: KayTar's morning urine was cloudy, so we ran to Walgreen's for some test strips. I tested her urine and it was VERY positive for leukocytes. We went to see the pediatrician and verified that she has a UTI...her very first (that we know of). If I hadn't seen her morning urine (if she had flushed like she should have, LOL), I never would have guessed. She didn't have any typical symptoms, but I hope that once this is cleared up, maybe some of her recent issues will resolve, too. Fingers crossed! I'm actually a little relieved to discover she has *just* an infection! Here's to another round of Suprax.
Monday, October 10, 2011
This weekend was sponsored by...
Miralax and Underjams.
KayTar has been having some GI issues again. For a couple of weeks now, she's been going several days between bowel movements (which means her constipation is getting out of control) and we've toyed with her Miralax dose, but haven't been able to work things out easily. She has been waffling between liquidy stool and nothing...so this weekend we upped the Miralax and stayed close to the bathroom! KayTar enjoyed some movies and relaxation time in my bed and we got things moving. I think she is all cleaned out now, the tricky part will be finding a dose that keeps things moving from here on out. She actually had fewer accidents this weekend than she normally does, because things were running like clockwork. I'd send her to the toilet after a feed and she'd take care of business. However, we can't keep things THAT loose for long, because she would be losing too much fluid that way. So hopefully we find the right dose for her!
In other GI news, we increased KayTar's feeds last week and it started out well, but she had some post-feed tummy pain a few times and then she vomited up her entire feed Friday night. She said she was too full. It was the first time she has vomited in a good long while (for her anyway) and the increase in formula volume was the only real change. Saturday morning, we went back down to 6 ounces at a time and she's been okay, mostly. She also threw up last night (a few minutes prior to puking, she was crying because she wanted to sleep in my bed for a third night in a row). I couldn't figure out where her puke bowl was in the dark (it was hiding under the bed) so I had to run her to the bathroom and we didn't quite make it all the way. There was a bit of a trail left behind us. Yuck. She seems okay, though...just part of being KayTar, I guess!
I'm a little disappointed that the transition back to 8 ounce feeds was not a success. While 6 ounces at a time is totally workable and much better than 4 ounce feeds, I just don't like that we've lost ground or that we're looking at a new normal for her. Although KayTar has a history of new issues cropping up on her, this is the first time I feel like we're likely seeing a decline in organ function (well, other than her progressive hearing loss). Her reflux and constipation have gotten worse and her volume tolerance has decreased. It is SLIGHT, so slight, but it is still a step in the wrong direction. Her GI doctor did write a prescription for Augmentin to be used as a prokinetic agent (200mg, 4 times daily) to try to get her back up to normal feeds, but I'm torn about starting that at this point. IF this is progression, then we are likely to see more at some point, and if we pull out the big guns now, there won't be many next steps to take LATER when we might be looking at a more significant decline. We can live with five 6 ounce feeds every day. It is a little more inconvenient, but not too much of a change overall. But if in a year or two years or three years, she starts to tolerate less and less volume, I don't want to be out of options. I'm getting ahead of myself, I recognize that, but these long term concerns are a factor in what decisions we make right now. I think at this point, we're going to keep her at 6 ounce feeds for a couple more weeks and maybe attempt another transition. I'm not sure if time will make any difference, but it is the course of action that seems least risky for her right now.
KayTar has been having some GI issues again. For a couple of weeks now, she's been going several days between bowel movements (which means her constipation is getting out of control) and we've toyed with her Miralax dose, but haven't been able to work things out easily. She has been waffling between liquidy stool and nothing...so this weekend we upped the Miralax and stayed close to the bathroom! KayTar enjoyed some movies and relaxation time in my bed and we got things moving. I think she is all cleaned out now, the tricky part will be finding a dose that keeps things moving from here on out. She actually had fewer accidents this weekend than she normally does, because things were running like clockwork. I'd send her to the toilet after a feed and she'd take care of business. However, we can't keep things THAT loose for long, because she would be losing too much fluid that way. So hopefully we find the right dose for her!
In other GI news, we increased KayTar's feeds last week and it started out well, but she had some post-feed tummy pain a few times and then she vomited up her entire feed Friday night. She said she was too full. It was the first time she has vomited in a good long while (for her anyway) and the increase in formula volume was the only real change. Saturday morning, we went back down to 6 ounces at a time and she's been okay, mostly. She also threw up last night (a few minutes prior to puking, she was crying because she wanted to sleep in my bed for a third night in a row). I couldn't figure out where her puke bowl was in the dark (it was hiding under the bed) so I had to run her to the bathroom and we didn't quite make it all the way. There was a bit of a trail left behind us. Yuck. She seems okay, though...just part of being KayTar, I guess!
I'm a little disappointed that the transition back to 8 ounce feeds was not a success. While 6 ounces at a time is totally workable and much better than 4 ounce feeds, I just don't like that we've lost ground or that we're looking at a new normal for her. Although KayTar has a history of new issues cropping up on her, this is the first time I feel like we're likely seeing a decline in organ function (well, other than her progressive hearing loss). Her reflux and constipation have gotten worse and her volume tolerance has decreased. It is SLIGHT, so slight, but it is still a step in the wrong direction. Her GI doctor did write a prescription for Augmentin to be used as a prokinetic agent (200mg, 4 times daily) to try to get her back up to normal feeds, but I'm torn about starting that at this point. IF this is progression, then we are likely to see more at some point, and if we pull out the big guns now, there won't be many next steps to take LATER when we might be looking at a more significant decline. We can live with five 6 ounce feeds every day. It is a little more inconvenient, but not too much of a change overall. But if in a year or two years or three years, she starts to tolerate less and less volume, I don't want to be out of options. I'm getting ahead of myself, I recognize that, but these long term concerns are a factor in what decisions we make right now. I think at this point, we're going to keep her at 6 ounce feeds for a couple more weeks and maybe attempt another transition. I'm not sure if time will make any difference, but it is the course of action that seems least risky for her right now.
Wednesday, October 05, 2011
Tuesday, October 04, 2011
Double Header.
KayTar is doing much better! She is still on Suprax, but she was doing well enough to attempt the day on Thursday. She made it through the day, although her glucose was a bit lower than usual (probably from the extra stress from the pneumonia). Friday was a in-service day, so she had extra time to rest/heal over the weekend. Monday was a totally normal day (right down to the daily headache)!
Since it has become clear that it will be months before we get the insurance issues sorted out so she can be seen at the facility that houses her mito doctor, and her soon-to-be geneticist and pulmonologist, we decided to see another pulmonologist in the meantime. Our pediatrician recommended someone (who happened to be the same doc that a friend recommended, too) so I called yesterday to get an appointment and they fit us in today, right after her already scheduled ophthalmology appointment. Perfect! It is so nice when we can take one trip out to the medical center and knock out more than one appointment...especially when we don't have to kill a chunk of time between them.
First up was ophthalmology and the dreaded eye drops. Oh, how she HATES the eye drops! She did pretty well this time, though. Yes, there was screaming, but it was like 5% of her normal eye drop screaming level, so we're putting it in the wins column. Her prescription has changed some since last time, enough to justify new glasses, but not enough to be causing the daily headaches. Drat. He said it is RARELY vision that causes these recurrent headaches, but it is good to rule it out altogether. KayTar got some of those super cool post-dilation shades and we were off to our second stop.
The pulmonologist seems great. He wasn't dismissive, which is what I was worried about. KayTar isn't a typical kid, even in terms of her systemic dysfunctions, so she needs doctors who can look a little beyond how normal kids function and how normal diseases progress. Those kind of doctors can be hard to come by! I told him about her weird breath-holding breathing pattern (and showed him a video) and told him about the transient desats. First, he started to say that those fingertip pulse oximeters are sometimes in accurate on little kiddos (which I agreed with) and that you really have to pay attention to things like the waveform and heart rate, too...and I politely interrupted to tell him that I had been paying attention to those factors, too, and it seems to be accurate. I had a video of it on my phone, so I showed it to him and he agreed that it seems accurate on all fronts. He doesn't think it is related to the weird breathing (so maybe that IS a tic?), but he thinks the desats are worth looking into. She had a pulmonary function test in the office today, which was good, and she is being scheduled for a sleep study in the near future. He said if it is happening when she is awake, it is probably happening as much or more while she sleeps, so hopefully that will give us some information. He's also going to look at her previous chest films to be sure nothing was missed. I think it is a solid plan and I'm glad we're looking into this a little more closely, it has been a nagging worry for months now.
When all was said and done, KayTar declared it the BEST DAY EVER (she's probably had a couple thousand best days ever by now) because she got disposable sunglasses from the ophthalmologist, and gloves and a nose clamp (from her PFT) from the pulmonologist. She's madly in love with that nose clamp because, "I can finally hold my nose without having to use my hands!" We're very lucky that she is so easy to please. :)
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| This zebra art car parked in front of us. |
Since it has become clear that it will be months before we get the insurance issues sorted out so she can be seen at the facility that houses her mito doctor, and her soon-to-be geneticist and pulmonologist, we decided to see another pulmonologist in the meantime. Our pediatrician recommended someone (who happened to be the same doc that a friend recommended, too) so I called yesterday to get an appointment and they fit us in today, right after her already scheduled ophthalmology appointment. Perfect! It is so nice when we can take one trip out to the medical center and knock out more than one appointment...especially when we don't have to kill a chunk of time between them.
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| "Take a picture of how strong I am!" |
First up was ophthalmology and the dreaded eye drops. Oh, how she HATES the eye drops! She did pretty well this time, though. Yes, there was screaming, but it was like 5% of her normal eye drop screaming level, so we're putting it in the wins column. Her prescription has changed some since last time, enough to justify new glasses, but not enough to be causing the daily headaches. Drat. He said it is RARELY vision that causes these recurrent headaches, but it is good to rule it out altogether. KayTar got some of those super cool post-dilation shades and we were off to our second stop.
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| Gloves! She was ecstatic they gave her some! |
The pulmonologist seems great. He wasn't dismissive, which is what I was worried about. KayTar isn't a typical kid, even in terms of her systemic dysfunctions, so she needs doctors who can look a little beyond how normal kids function and how normal diseases progress. Those kind of doctors can be hard to come by! I told him about her weird breath-holding breathing pattern (and showed him a video) and told him about the transient desats. First, he started to say that those fingertip pulse oximeters are sometimes in accurate on little kiddos (which I agreed with) and that you really have to pay attention to things like the waveform and heart rate, too...and I politely interrupted to tell him that I had been paying attention to those factors, too, and it seems to be accurate. I had a video of it on my phone, so I showed it to him and he agreed that it seems accurate on all fronts. He doesn't think it is related to the weird breathing (so maybe that IS a tic?), but he thinks the desats are worth looking into. She had a pulmonary function test in the office today, which was good, and she is being scheduled for a sleep study in the near future. He said if it is happening when she is awake, it is probably happening as much or more while she sleeps, so hopefully that will give us some information. He's also going to look at her previous chest films to be sure nothing was missed. I think it is a solid plan and I'm glad we're looking into this a little more closely, it has been a nagging worry for months now.
When all was said and done, KayTar declared it the BEST DAY EVER (she's probably had a couple thousand best days ever by now) because she got disposable sunglasses from the ophthalmologist, and gloves and a nose clamp (from her PFT) from the pulmonologist. She's madly in love with that nose clamp because, "I can finally hold my nose without having to use my hands!" We're very lucky that she is so easy to please. :)
Friday, September 30, 2011
Some days I am too lazy to come up with a title.
Let's see...where did I leave off? Hmmm...oh yeah, it was Tuesday, she was sick and we were going to see the pediatrician the next day. So that's what we did! Her lungs didn't sound stellar, but there were no obvious crackles yet. Yet being the key word, as this is KayTar's pneumonia pattern. URI that resolves, a couple of days later she has a new onset fever, wet cough...we go to the pediatrician and her lungs sound yucky, but not quite crackling, so we wait and see, and 1-2 days later, we are back in for full-blown pneumonia! So this time, the pediatrician just decided to call it and treat. Generally speaking, I'm not in favor of antibiotics in these iffy cases and prefer to wait it out, but we've been through this enough for me to be pretty sure of where she was heading if we didn't treat. She hasn't had antibiotics since her pneumonia last February, so I was okay with it, as was the pediatrician. So she is on a course of Suprax and using Pulmicort once daily until she's sounding better.
We got her prescriptions filled on Wednesday, we paid $50 for them. On the pamphlets, it said, "Your insurance saved you $303.99 and $603.99." Can you believe that? $908+50=$958...high enough to be rounded to A GRAND! This is why I have a series of small panic attacks every time we resubmit our CHIP paperwork. This was just one illness...a drop in the bucket compared to the overall costs of keeping our girl running!
Speaking of CHIP, our appeal to change health plans was denied. We have to wait until our yearly renewal period to change health plans. Ugh. I'm not happy about this...I really, really want her to be seen by pulmonology. I feel like we've already been sitting on these breathing problems for too long, several more months is not acceptable to me. Not to mention, we are supposed to see the new geneticist in two weeks...and not doing that will delay further testing and our next appointment with her mito doc. I'm not sure what we need to do here, but I'm not really okay with putting it all off for so long. At least we HAVE insurance, though.
At the pediatrician visit, she and I discussed how KayTar's gut issues have been since the last visit. She brought up something I mentioned to her in an email after the GI visit, which was that the GI suggested that it may be disease progression. She said that she thinks of KayTar as a kid who has some challenges and limitations, but she's made such great strides and is always moving upward, so she never thinks of her in those progressive disease terms. She said, "It kind of made me..." and she paused, looked at me with a bit of concern in her eyes, put her hand on her heart, and frowned a little..."to think of her like that." It was one of those moments where I thought, "Gosh, we're lucky to have a doctor so invested in our girl." and "That is the kind of doctor I want to be." all at the same time. A lot of things are uncertain in life with KayTar, but it is much easier to handle with wonderful people on her team.
- Posted using BlogPress from my iPad
We got her prescriptions filled on Wednesday, we paid $50 for them. On the pamphlets, it said, "Your insurance saved you $303.99 and $603.99." Can you believe that? $908+50=$958...high enough to be rounded to A GRAND! This is why I have a series of small panic attacks every time we resubmit our CHIP paperwork. This was just one illness...a drop in the bucket compared to the overall costs of keeping our girl running!
Speaking of CHIP, our appeal to change health plans was denied. We have to wait until our yearly renewal period to change health plans. Ugh. I'm not happy about this...I really, really want her to be seen by pulmonology. I feel like we've already been sitting on these breathing problems for too long, several more months is not acceptable to me. Not to mention, we are supposed to see the new geneticist in two weeks...and not doing that will delay further testing and our next appointment with her mito doc. I'm not sure what we need to do here, but I'm not really okay with putting it all off for so long. At least we HAVE insurance, though.
At the pediatrician visit, she and I discussed how KayTar's gut issues have been since the last visit. She brought up something I mentioned to her in an email after the GI visit, which was that the GI suggested that it may be disease progression. She said that she thinks of KayTar as a kid who has some challenges and limitations, but she's made such great strides and is always moving upward, so she never thinks of her in those progressive disease terms. She said, "It kind of made me..." and she paused, looked at me with a bit of concern in her eyes, put her hand on her heart, and frowned a little..."to think of her like that." It was one of those moments where I thought, "Gosh, we're lucky to have a doctor so invested in our girl." and "That is the kind of doctor I want to be." all at the same time. A lot of things are uncertain in life with KayTar, but it is much easier to handle with wonderful people on her team.
- Posted using BlogPress from my iPad
Tuesday, September 27, 2011
Commencing Parade of Pathogens...
Well, it happened. The first fever of the school year has arrived at Casa del 'Tars. I posted the following status update on Friday afternoon:
So, OF COURSE, she spiked a fever less than 24 hours later. She ran a fever on and off all day Saturday and needed breathing treatments through the weekend. She got strangely spinny/wobbly on Saturday night with no obvious cause (glucose and ketones were fine, O2 sats seemed in her normal range), but on Sunday the fever was gone and she was making improvements. I kept her home Monday because she wasn't up to school yet, but she had been fever-free for 2 days. Then last night/this morning at 3am, she started shouting that she couldn't sleep, so I went to her room to give her the "It is the middle of the night, so you need to try to sleep a while longer." speech, but then she started coughing and it sounded terrible. I grabbed my stethoscope to give her a listen and when I touched her, I knew her fever was back. I verified that with the thermometer and then set her up with her nebulizer and cartoons. Needless to say, she stayed home today. Tomorrow, we have an appointment with the pediatrician to make sure her little URI hasn't made the leap to pneumonia.
****
It isn't all yucky sickness around here, though...here are a few KayTar gems from the past few days:You're welcome. ;)
Wednesday, September 21, 2011
Mitochondrial Awareness Week
If we're Facebook friends, you probably already know it is Mitochondrial Disease Awareness Week! Although KayTar has not been diagnosed with this disease...she has many symptoms in common with this condition and may one day be diagnosed with it. Regardless of whether she does or does not have this particular disease, awareness still needs to be generated because all of the precious kiddos that do have mitochondrial disease need a cure (whether my girl is one of them or not!). Most people never hear about mitochondrial disease unless their child is being tested for it or is diagnosed with it!
Mitochondrial disease affects roughly 1 in 3000-4000 children, in comparison the incidence of childhood cancers is 1-2 in 10,000 and the incidence of cystic fibrosis is 1 in 3500. Although mito has a similar incidence of these two diseases, it is much less well-known!
Mitochondrial disease is caused by a defect in the mitochondria in cells. Mitochondria are the organelles that convert the nutrients in your body into ATP, which is the energy it uses to power your cells. As cells run out of energy or run on less than optimal amounts of energy, organs begin to show signs of damage. Mitochondria also have specialized functions in different cells in the body, so when they are not functioning properly, it affects some tissues in more profound ways.
Mitochondrial disease is incredibly hard to recognize even for physicians, not only because it is not as well-known as other conditions, but also because of the huge variation of symptoms. Even within the same family, with the same genetic defect, children present in very different ways. Click here to see a list of the possible symptoms of mitochondrial disease. They say to think mito when 3 or more different organ/systems are affected by an undiagnosed disease.
There is no single test that can diagnose or rule out mitochondrial disease with certainty across all cases. Laboratory tests, imaging studies, and even muscle biopsies often only give part of the answer. Diagnosing mitochondrial disease is like putting together a puzzle, but most physicians are not equipped to recognize that the pieces all belong to the same puzzle! Often pieces of the puzzle are parceled out to various specialists and no one looks at them all collectively. There are only a handful of mitochondrial specialists in the US and it takes most people years to be properly diagnosed.
For a first hand perspective on life with mitochondrial disease (and more great info!), visit some of our blog-friends:
Life with The Ferrells
Life with Jack
Bricen's Way
Our Exceptional Life
Mito Life Window
Mitochondrial disease affects roughly 1 in 3000-4000 children, in comparison the incidence of childhood cancers is 1-2 in 10,000 and the incidence of cystic fibrosis is 1 in 3500. Although mito has a similar incidence of these two diseases, it is much less well-known!
Mitochondrial disease is caused by a defect in the mitochondria in cells. Mitochondria are the organelles that convert the nutrients in your body into ATP, which is the energy it uses to power your cells. As cells run out of energy or run on less than optimal amounts of energy, organs begin to show signs of damage. Mitochondria also have specialized functions in different cells in the body, so when they are not functioning properly, it affects some tissues in more profound ways.
Mitochondrial disease is incredibly hard to recognize even for physicians, not only because it is not as well-known as other conditions, but also because of the huge variation of symptoms. Even within the same family, with the same genetic defect, children present in very different ways. Click here to see a list of the possible symptoms of mitochondrial disease. They say to think mito when 3 or more different organ/systems are affected by an undiagnosed disease.
There is no single test that can diagnose or rule out mitochondrial disease with certainty across all cases. Laboratory tests, imaging studies, and even muscle biopsies often only give part of the answer. Diagnosing mitochondrial disease is like putting together a puzzle, but most physicians are not equipped to recognize that the pieces all belong to the same puzzle! Often pieces of the puzzle are parceled out to various specialists and no one looks at them all collectively. There are only a handful of mitochondrial specialists in the US and it takes most people years to be properly diagnosed.
For a first hand perspective on life with mitochondrial disease (and more great info!), visit some of our blog-friends:
Life with The Ferrells
Life with Jack
Bricen's Way
Our Exceptional Life
Mito Life Window
Saturday, September 17, 2011
Weekend Update
The Gas Fiasco
As of 6:30 last night, we have gas service restored! What a trip this has been. Whoa. The new plumbing company we used was wonderful. Friendly service, FAST, and a decent price...all with the added benefit of discussing with a knowledgeable plumber. If you are a local friend and need plumbing work done, call Crown Plumbing! So, the plumbers started work on Wednesday. I came home to find the most beautiful looking trench that I've ever laid eyes on in the backyard, progress! They got the line replaced and the new up-to-code valves installed on Wednesday night, but when they pressured tested the line, gas was still being lost somewhere. We have (well, HAD) two old-school gas wall heaters in the bathroom...Josh didn't mention them to the plumber, because the guy from John Moore told him they were not important for this. Turns out, he was WRONG, they were important AND they were leaking gas. Because the new plumber wasn't prepared for working on these, he had to get additional parts and come back the next day. The heaters were removed and the lines were capped off (and now we are sporting some wicked-fancy holes in our sheet rock) and he retested the line. It was STILL loosing pressure, so he went in search of more leaks. He found on in the cubby in BubTar's closet that houses the furnace. There was a leak at one of the 90 degree turns in the line, so he fixed that...then he found another...and ANOTHER! Three leaks up there, one in each of the bathrooms, in addition to the line itself detaching. Even though they were probably minuscule leaks without full pressure in the lines, it is still a little unsettling to discover! He fixed everything on Thursday morning. Thursday afternoon, a city inspector came out and said it was in working order and they would release the utilities so the gas company could return our meter and turn our service back on. That evening, a worker from the gas company came out and refuse to install our meter because the trench was not filled in yet. It seemed like a total BS excuse since the neither the plumber nor the city inspector mentioned that was a problem. Alas, what can you do? So he left and we still had no gas. Friday morning, the plumber had the diggers come fill back in the trench and we called the gas company back. I stayed home on Friday until it was time to take KayTar to therapy, at which time Josh came to sit at the house just in case they showed. They did show, but got called out on an emergency and said they couldn't say when they would be back. I just picked the kids up after therapy and brought them home to wait. It was Friday afternoon and we did not want to go another weekend without gas! He showed up at about 6pm and got us fixed right up. He said lines are snapping left and right in our city and he had been called out on 3 just that day! He also said that when people ask him what plumber to use he says, "I can't tell them who they should use, but I tell them who they shouldn't use and that is John Moore! Call John and pay more!" He also said the guy that had come out the night before will do ANYTHING to get out of working and there was no reason he couldn't have reattached the meter with the trench open. Siiiigh. More incompetence. It is all good, though, because we have gas again...after 16 days without it! A hot shower in my own home has never been as luxurious as it was last night! :)
KayTar + Nexium
KayTar started Nexium 2 days ago and it has been encouraging so far! The first day, she ate 2 pieces of bacon, most of her Pringles, an entire hot dog (hold the bun) and asked for a second at lunch, 3 mini-popsicles, and 2 still-frozen nuggets at dinner! This morning she has already had 2 pieces of bacon, a jar of baby food peas, 4 pepperoni, and a mini-popsicle. She told me that she hasn't thrown up in her mouth for 2 days! :) I'm feeling very hopeful about this medication switch!
Insurance Drama
Last Friday, I spent almost the entire day on the phone.The insurance issue with the new clinic and her current health plan has reached an impasse and we are going to have to switch. I first called the state to inquire about how I would go about changing health plans, since we never have, and I was assured that it was a simple phone call and we would be squared away. But before I made the switch, I called EVERYONE to be sure they all take the prospective new plan. I talked to probably 25 customer service reps...every clinic, doctor, pharmacy, HHC, therapist that KayTar receives services from was on my list. They all accept this health plan, so I called the state back. This time I was told we were no longer able to switch, because we had been on our current plan more than 90 days. We could appeal this decision in writing, but even if approved it wouldn't go into effect until after the first of October (at the earliest). Siiiiigh. I told her what the previous rep had told me and she said that was not the case. So I said okay, and then called back to try to reach the original rep. Except, you can't actually do that. They give you rep ID numbers, but they are useless because they do not have extension or someway to connect to do a specific rep. So I used this third rep as a tie breaker of sorts (or a tie creator? seems like the phrasing here is wrong, but you get the idea), and she said the same thing as the second rep, so I submitted a letter in writing...now we wait! As a little bonus to this story, I received a letter in the mail yesterday saying that the kids might lose insurance coverage at the end of October. I promptly had a series of small heart attacks while dialing the state HHSC to find out what was going on...only to be told that the letter was sent in error and we would be receiving a corrected letter in about 2 days. WHEW!
KayTar + head pains
Poor KayTar is having a lot of headaches/pains lately. She had at least 2 last week and one every day this week. We were talking about it a couple of days ago and she said, "I have head pain EVERY day." but she said it with a DUH tone of voice, like this was obviously something I should already know. They are not incapacitating and often she just wants an ice pack, but it still doesn't sit right with me. She complains of pain over her right eye on her forehead and in her eyes themselves. She has an ophtho check on the 27th, so if it is a glasses issue, we should know then. Otherwise, I'm not sure what is going on! Maybe sinus pain from allergies? We have her on Benadryl and Claritin, and her allergies seem well-controlled. Maybe headaches from transient desats? I honestly don't know. We see pulmonology on October 11th (since we had to push it back due to the insurance drama) and we see the new geneticist that day, too. Hopefully one of her doctors will have a helpful suggestion!
KayTar + OT
Yesterday was KayTar's first OT appointment in over a month! She was doing feeding therapy and with the gut changes and decreased feeding tolerance, we just took a break while we went through testing for that. Because it still isn't under control, we are taking a break from feeding OT and switching to more traditional OT for her fine motor strength and coordination. We have known for sometime that she has weaker hands than her peers, but we just have not focused on it until now. The therapist did testing with KayTar yesterday and WHOA, her hands are weak! She was tested with a hand gripper equipped with some sort of pressure guage, and she scored a 6 with one hand and a 7 with the other...normal for her age is 28-29! That is significant weakness. That combined with the inefficient way she grips her pencil and the EXTREME force she uses to push the pencil to the paper, it is no wonder she fatigues so easy during writing assignments. Until we are able to get her back to "regular" feeds, we will be doing all fine motor work in OT, and if we get her gut issues under control, we will add in some texture/feeding work, too...just not as much as before. Oh, and the OT really noted her new breathing pattern, too, and commented it was not nearly that bad the last time she had seen her. She wants the pulmonologist to make sure things are okay with her airway before we start back with the feeding stuff, too.
As of 6:30 last night, we have gas service restored! What a trip this has been. Whoa. The new plumbing company we used was wonderful. Friendly service, FAST, and a decent price...all with the added benefit of discussing with a knowledgeable plumber. If you are a local friend and need plumbing work done, call Crown Plumbing! So, the plumbers started work on Wednesday. I came home to find the most beautiful looking trench that I've ever laid eyes on in the backyard, progress! They got the line replaced and the new up-to-code valves installed on Wednesday night, but when they pressured tested the line, gas was still being lost somewhere. We have (well, HAD) two old-school gas wall heaters in the bathroom...Josh didn't mention them to the plumber, because the guy from John Moore told him they were not important for this. Turns out, he was WRONG, they were important AND they were leaking gas. Because the new plumber wasn't prepared for working on these, he had to get additional parts and come back the next day. The heaters were removed and the lines were capped off (and now we are sporting some wicked-fancy holes in our sheet rock) and he retested the line. It was STILL loosing pressure, so he went in search of more leaks. He found on in the cubby in BubTar's closet that houses the furnace. There was a leak at one of the 90 degree turns in the line, so he fixed that...then he found another...and ANOTHER! Three leaks up there, one in each of the bathrooms, in addition to the line itself detaching. Even though they were probably minuscule leaks without full pressure in the lines, it is still a little unsettling to discover! He fixed everything on Thursday morning. Thursday afternoon, a city inspector came out and said it was in working order and they would release the utilities so the gas company could return our meter and turn our service back on. That evening, a worker from the gas company came out and refuse to install our meter because the trench was not filled in yet. It seemed like a total BS excuse since the neither the plumber nor the city inspector mentioned that was a problem. Alas, what can you do? So he left and we still had no gas. Friday morning, the plumber had the diggers come fill back in the trench and we called the gas company back. I stayed home on Friday until it was time to take KayTar to therapy, at which time Josh came to sit at the house just in case they showed. They did show, but got called out on an emergency and said they couldn't say when they would be back. I just picked the kids up after therapy and brought them home to wait. It was Friday afternoon and we did not want to go another weekend without gas! He showed up at about 6pm and got us fixed right up. He said lines are snapping left and right in our city and he had been called out on 3 just that day! He also said that when people ask him what plumber to use he says, "I can't tell them who they should use, but I tell them who they shouldn't use and that is John Moore! Call John and pay more!" He also said the guy that had come out the night before will do ANYTHING to get out of working and there was no reason he couldn't have reattached the meter with the trench open. Siiiigh. More incompetence. It is all good, though, because we have gas again...after 16 days without it! A hot shower in my own home has never been as luxurious as it was last night! :)
KayTar + Nexium
KayTar started Nexium 2 days ago and it has been encouraging so far! The first day, she ate 2 pieces of bacon, most of her Pringles, an entire hot dog (hold the bun) and asked for a second at lunch, 3 mini-popsicles, and 2 still-frozen nuggets at dinner! This morning she has already had 2 pieces of bacon, a jar of baby food peas, 4 pepperoni, and a mini-popsicle. She told me that she hasn't thrown up in her mouth for 2 days! :) I'm feeling very hopeful about this medication switch!
Insurance Drama
Last Friday, I spent almost the entire day on the phone.The insurance issue with the new clinic and her current health plan has reached an impasse and we are going to have to switch. I first called the state to inquire about how I would go about changing health plans, since we never have, and I was assured that it was a simple phone call and we would be squared away. But before I made the switch, I called EVERYONE to be sure they all take the prospective new plan. I talked to probably 25 customer service reps...every clinic, doctor, pharmacy, HHC, therapist that KayTar receives services from was on my list. They all accept this health plan, so I called the state back. This time I was told we were no longer able to switch, because we had been on our current plan more than 90 days. We could appeal this decision in writing, but even if approved it wouldn't go into effect until after the first of October (at the earliest). Siiiiigh. I told her what the previous rep had told me and she said that was not the case. So I said okay, and then called back to try to reach the original rep. Except, you can't actually do that. They give you rep ID numbers, but they are useless because they do not have extension or someway to connect to do a specific rep. So I used this third rep as a tie breaker of sorts (or a tie creator? seems like the phrasing here is wrong, but you get the idea), and she said the same thing as the second rep, so I submitted a letter in writing...now we wait! As a little bonus to this story, I received a letter in the mail yesterday saying that the kids might lose insurance coverage at the end of October. I promptly had a series of small heart attacks while dialing the state HHSC to find out what was going on...only to be told that the letter was sent in error and we would be receiving a corrected letter in about 2 days. WHEW!
KayTar + head pains
Poor KayTar is having a lot of headaches/pains lately. She had at least 2 last week and one every day this week. We were talking about it a couple of days ago and she said, "I have head pain EVERY day." but she said it with a DUH tone of voice, like this was obviously something I should already know. They are not incapacitating and often she just wants an ice pack, but it still doesn't sit right with me. She complains of pain over her right eye on her forehead and in her eyes themselves. She has an ophtho check on the 27th, so if it is a glasses issue, we should know then. Otherwise, I'm not sure what is going on! Maybe sinus pain from allergies? We have her on Benadryl and Claritin, and her allergies seem well-controlled. Maybe headaches from transient desats? I honestly don't know. We see pulmonology on October 11th (since we had to push it back due to the insurance drama) and we see the new geneticist that day, too. Hopefully one of her doctors will have a helpful suggestion!
KayTar + OT
Yesterday was KayTar's first OT appointment in over a month! She was doing feeding therapy and with the gut changes and decreased feeding tolerance, we just took a break while we went through testing for that. Because it still isn't under control, we are taking a break from feeding OT and switching to more traditional OT for her fine motor strength and coordination. We have known for sometime that she has weaker hands than her peers, but we just have not focused on it until now. The therapist did testing with KayTar yesterday and WHOA, her hands are weak! She was tested with a hand gripper equipped with some sort of pressure guage, and she scored a 6 with one hand and a 7 with the other...normal for her age is 28-29! That is significant weakness. That combined with the inefficient way she grips her pencil and the EXTREME force she uses to push the pencil to the paper, it is no wonder she fatigues so easy during writing assignments. Until we are able to get her back to "regular" feeds, we will be doing all fine motor work in OT, and if we get her gut issues under control, we will add in some texture/feeding work, too...just not as much as before. Oh, and the OT really noted her new breathing pattern, too, and commented it was not nearly that bad the last time she had seen her. She wants the pulmonologist to make sure things are okay with her airway before we start back with the feeding stuff, too.
Wednesday, September 14, 2011
The GI Plan.
KayTar had her follow-up appointment with her gastroenterologist yesterday. Dr. R is one of my favorite doctors and not JUST because she has let me shadow her service before! She is always interested in KayTar as a whole child, not just a GI tract. She talks with both of us and even allows KayTar to have a bit of stage time to tell jokes/do impressions or whatever she happens to think up. I have never felt rushed in one of these visits, which was especially appreciated this time as we had a bit more to discuss than usual, since KayTar's GI system has been the biggest troublemaker lately.
First, we discussed the gastric emptying scan. She confirmed it was abnormal and that KayTar is having motility issues. I asked if the half-emptying time is volume-dependent (meaning that it always takes her stomach 73 minutes to just move 1.5 ounces out) or not (meaning that 4 ounces would move through in the same time frame if it was half of the stomach's contents), and she said in MOST people, it is not volume-dependent and the stomach should half-empty in the same time threshold whether there was 3 or 8 ounces in there to start. However, she qualified that with a "BUT, this is KayTar, soooo I can't say if that is the case here or not. Her motility may worsen with increased volume." Basically, the scan was enough to confirm the clinical symptoms we were observing in her sudden volume intolerance and increased reflux, but it can't give us more precise information.
Then, she gave us the new plan. She is switching KayTar's PPI from Prevacid to Nexium, which we will start tonight. Then, in two weeks, she wants us to try to transition KayTar back to her normal formula volume. If it works, great! If not, then we will start giving KayTar a dose of Augmentin prior to every feed as a prokinetic to help induce more normal motility in her gut. If we are still unable to get her back to regular feeds, we will just continue with this smaller/more frequent feeding schedule, and follow up in January. She said she likely will not order any further testing until summer (at the earliest) because she doesn't want to disrupt KayTar's school schedule and the next tests are rather unpleasant. She said that if her overall intake and growth continue to be good, we may put it off until it is really necessary to put her through. Hopefully one or both of the new medications will help get her back on track, but if not, I'm fine with the plan she has laid out for KayTar.
Finally, we discussed what might have triggered this change. She said it may be a post-viral phenomenon from her relatively minor viral infection in June...but probably not. She said it may just be "a KayTar thing", which is the category most things fall into. She also said it could be disease progression (what disease? we don't know!), but that said she'd like to ignore that last one and that I probably would, too. She is definitely right about that. Losing ground is one of the hardest parts of any disorder/disease, I'm sure, but it is especially hard when you don't even know what disease is causing it to happen and if it might be preventable if you DID know what you were up against. So, for now, we are just going to keep on trucking and not worry too much about that aspect of it. We'll try the new medications and then go from there, depending on what the results are. The new feeding schedule isn't the worst thing to ever happen, in fact, she hasn't vomited once at school this year (knock on wood), but it is more disruptive for her and for the people caring for her, whether at school or at home....so if we can get her back to "normal" (or maybe even up to 6 ounces every 3 hours), I think everyone would be pleased!
First, we discussed the gastric emptying scan. She confirmed it was abnormal and that KayTar is having motility issues. I asked if the half-emptying time is volume-dependent (meaning that it always takes her stomach 73 minutes to just move 1.5 ounces out) or not (meaning that 4 ounces would move through in the same time frame if it was half of the stomach's contents), and she said in MOST people, it is not volume-dependent and the stomach should half-empty in the same time threshold whether there was 3 or 8 ounces in there to start. However, she qualified that with a "BUT, this is KayTar, soooo I can't say if that is the case here or not. Her motility may worsen with increased volume." Basically, the scan was enough to confirm the clinical symptoms we were observing in her sudden volume intolerance and increased reflux, but it can't give us more precise information.
Then, she gave us the new plan. She is switching KayTar's PPI from Prevacid to Nexium, which we will start tonight. Then, in two weeks, she wants us to try to transition KayTar back to her normal formula volume. If it works, great! If not, then we will start giving KayTar a dose of Augmentin prior to every feed as a prokinetic to help induce more normal motility in her gut. If we are still unable to get her back to regular feeds, we will just continue with this smaller/more frequent feeding schedule, and follow up in January. She said she likely will not order any further testing until summer (at the earliest) because she doesn't want to disrupt KayTar's school schedule and the next tests are rather unpleasant. She said that if her overall intake and growth continue to be good, we may put it off until it is really necessary to put her through. Hopefully one or both of the new medications will help get her back on track, but if not, I'm fine with the plan she has laid out for KayTar.
Finally, we discussed what might have triggered this change. She said it may be a post-viral phenomenon from her relatively minor viral infection in June...but probably not. She said it may just be "a KayTar thing", which is the category most things fall into. She also said it could be disease progression (what disease? we don't know!), but that said she'd like to ignore that last one and that I probably would, too. She is definitely right about that. Losing ground is one of the hardest parts of any disorder/disease, I'm sure, but it is especially hard when you don't even know what disease is causing it to happen and if it might be preventable if you DID know what you were up against. So, for now, we are just going to keep on trucking and not worry too much about that aspect of it. We'll try the new medications and then go from there, depending on what the results are. The new feeding schedule isn't the worst thing to ever happen, in fact, she hasn't vomited once at school this year (knock on wood), but it is more disruptive for her and for the people caring for her, whether at school or at home....so if we can get her back to "normal" (or maybe even up to 6 ounces every 3 hours), I think everyone would be pleased!
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| Completely unrelated photo ;) |
Tuesday, September 13, 2011
Still no gas...
I spent Friday at the house, waiting in vain for the city inspector and plumber to come by. We paid the plumber $300 on 9/1/11 to pull the permit and had absolutely nothing to show for it. On Tuesday, 9/6/11, the city inspector came by, but the plumber did not call us to notify us so someone could be here. The city inspector left a sticker to show that he had been there and that the plumbing company needed to reschedule. All week long, Josh had been placing calls to get someone to come back out and so the inspection so we could get work started. Friday was more of the same. I decided that if Josh's frequent calls were not enough, they needed to hear from me, too, so I started calling around noon. I was PROMISED someone would be out between 1 and 4pm. I told the customer service rep that I generally pick my kids up within that window and he told me to make other arrangements because someone would be coming by for sure. I left a note on the door when I left and picked the kids up in the office to save time. NO ONE CAME. I called the plumber back to complain and was promised a call back and never got one.
I had to cancel KayTar's pulmonology appointment yesterday (long story for another day), but since I had planned to miss class, I stayed home anyway. KayTar's feeding pump was in need of service, so I stayed here to get the pump taken care of and to wait for someone from the city/plumbing company to get the inspection done. I kept the pump at home with me, because I didn't know exactly when the tech would come by, so after I got an ETA from the company, I left the house for 30 minutes to bring it to KayTar's school so she could get her feed and I could then bring it home to be serviced. I left a note on the door saying, "HHCName/PlumberName/City of CityName, if no one is home call CellNumber. Will be right back!" When I got home, there was a sticker from the city on the note...but no one had called me. AGH! So Josh got on the phone again with the plumbing company and raised some hell. They assured him someone would come back out after 12:30, so I made plans to stay home for the rest of the day.
At 2pm, a city inspector arrived and said, "Yes, I'm here to do an annual foster home inspection..." I didn't even realize what he said at first, I was just so happy to see him! I brought him to the backyard and he said, "Is this a foster home?" I said, "No? This is a residential home with a broken gas line." He said, "I am here to do an annual inspection for a foster home." WHAT?! The stupid plumbing company had pulled the wrong permit, in fact, NO INSPECTION NEEDED TO BE DONE until after the work was completed. This was maddening, because we asked the plumbing company how the city was going to inspect/test a clearly broken gas line, but they kept telling us it had to be done. So absolutely nothing has been done because we have been waiting on this supposedly mandatory inspection. The city inspector was nice and helpful and pretty disgusted by the apparent idiocy of the plumbing company. He went ahead and looked at our in-house gas apparatus to be sure it was up to code so we wouldn't face another delay after the work is completed...and it wasn't up to code. Of course. We need all new valves, too. At least we know on the front side, though, I can only imagine how long it would have taken if we found out about it after the rest of the work was done. He left a business card, as well as detailed notes on what needed to be done and told me how to get the permit switched, in case we wanted to choose another more competent plumber to do the work. He was the first competent person we have spoken to about this whole mess in the 12 days we have been without gas.
Yesterday evening, the plumbing company sent someone new out to look at what needed to be done. They blamed the error with the permit and delay on the person they sent out to do the original quote. Whatever. You would THINK that in the 12 days we have been calling and asking for assistance and complaining about the lack of work, someone would have actually bothered to read the notes on our order and realize it was a broken gas line and an error had been made! The new guy gave us a new quote...SIX GRAND to replace the line. The first guy they sent out said it would be $300 for the permit and $200 for the work. First, they pull the WRONG permit and now we were being told SIX GRAND for the work?! The other option was basically a patch job with no warranty for $2300. They needed half of the payment up front, too. We are not the type of people to have thousands of dollars lying around waiting for something like this...we are the type of people who have two kids at home...who have had to take a pay cut to qualify for the ONLY insurance that will cover our child with complex medical needs...who are both university students...and who have one job between the two of them. We do fine, I'm definitely not complaining, but we don't have piles of money lying around, unfortunately. I suggested to Josh that it wouldn't hurt to look around a little, because it isn't like anything was happening QUICKLY to resolve this. We were both a little dumbfounded about it all and I griped on Facebook, as I am prone to do, and a friend saw it and put us in contact with a plumber they know from church. He told them to have Josh call last night (even though it was 9pm) and he seemed intelligent, helpful, competent, and told us he could come out this morning between 8:30-8:45am (a fifteen minute window!) to look at what needed to be done. He came by this morning, inside the time window he gave us, and quoted us a price for a total line replacement and new valves that was less than the patch job we were quoted last night. He will have diggers out here tomorrow morning to get this going and we will not need to be here until he is doing the indoor work and the inspector needs to come back. He will keep us posted so we can plan on when we need to be here, and we can reach him personally via cell phone, if needed. It still isn't going to be a cheap fix, but I feel a million times better paying this guy for the work than I would have paying the original company. We may actually have a stove, oven, and hot water by the end of the week...fingers crossed!
The moral of the story is that the John Moore jingle did ring true in our experience. If you call John...you do get Moore...more headaches, more waiting, more debt, and more incompetence. Learn from our mistakes...even when there is a seemingly emergent situation, do not just go with the first name/company you know in the field. Shop around. If we had gotten multiple quotes when this first happened, we'd probably have gas by now.
Disclaimer: This post is meant to relate my personal experiences and opinion, it is not intended to malign any organization, company, or individual.
Edited to add: John Moore did release the permit like we asked, so we didn't have to file paperwork with city hall. They also refunded us the $300 we paid for the permit to be pulled originally. So we lost 12 days to this fiasco, but at least we didn't lose any additional money!
I had to cancel KayTar's pulmonology appointment yesterday (long story for another day), but since I had planned to miss class, I stayed home anyway. KayTar's feeding pump was in need of service, so I stayed here to get the pump taken care of and to wait for someone from the city/plumbing company to get the inspection done. I kept the pump at home with me, because I didn't know exactly when the tech would come by, so after I got an ETA from the company, I left the house for 30 minutes to bring it to KayTar's school so she could get her feed and I could then bring it home to be serviced. I left a note on the door saying, "HHCName/PlumberName/City of CityName, if no one is home call CellNumber. Will be right back!" When I got home, there was a sticker from the city on the note...but no one had called me. AGH! So Josh got on the phone again with the plumbing company and raised some hell. They assured him someone would come back out after 12:30, so I made plans to stay home for the rest of the day.
At 2pm, a city inspector arrived and said, "Yes, I'm here to do an annual foster home inspection..." I didn't even realize what he said at first, I was just so happy to see him! I brought him to the backyard and he said, "Is this a foster home?" I said, "No? This is a residential home with a broken gas line." He said, "I am here to do an annual inspection for a foster home." WHAT?! The stupid plumbing company had pulled the wrong permit, in fact, NO INSPECTION NEEDED TO BE DONE until after the work was completed. This was maddening, because we asked the plumbing company how the city was going to inspect/test a clearly broken gas line, but they kept telling us it had to be done. So absolutely nothing has been done because we have been waiting on this supposedly mandatory inspection. The city inspector was nice and helpful and pretty disgusted by the apparent idiocy of the plumbing company. He went ahead and looked at our in-house gas apparatus to be sure it was up to code so we wouldn't face another delay after the work is completed...and it wasn't up to code. Of course. We need all new valves, too. At least we know on the front side, though, I can only imagine how long it would have taken if we found out about it after the rest of the work was done. He left a business card, as well as detailed notes on what needed to be done and told me how to get the permit switched, in case we wanted to choose another more competent plumber to do the work. He was the first competent person we have spoken to about this whole mess in the 12 days we have been without gas.
Yesterday evening, the plumbing company sent someone new out to look at what needed to be done. They blamed the error with the permit and delay on the person they sent out to do the original quote. Whatever. You would THINK that in the 12 days we have been calling and asking for assistance and complaining about the lack of work, someone would have actually bothered to read the notes on our order and realize it was a broken gas line and an error had been made! The new guy gave us a new quote...SIX GRAND to replace the line. The first guy they sent out said it would be $300 for the permit and $200 for the work. First, they pull the WRONG permit and now we were being told SIX GRAND for the work?! The other option was basically a patch job with no warranty for $2300. They needed half of the payment up front, too. We are not the type of people to have thousands of dollars lying around waiting for something like this...we are the type of people who have two kids at home...who have had to take a pay cut to qualify for the ONLY insurance that will cover our child with complex medical needs...who are both university students...and who have one job between the two of them. We do fine, I'm definitely not complaining, but we don't have piles of money lying around, unfortunately. I suggested to Josh that it wouldn't hurt to look around a little, because it isn't like anything was happening QUICKLY to resolve this. We were both a little dumbfounded about it all and I griped on Facebook, as I am prone to do, and a friend saw it and put us in contact with a plumber they know from church. He told them to have Josh call last night (even though it was 9pm) and he seemed intelligent, helpful, competent, and told us he could come out this morning between 8:30-8:45am (a fifteen minute window!) to look at what needed to be done. He came by this morning, inside the time window he gave us, and quoted us a price for a total line replacement and new valves that was less than the patch job we were quoted last night. He will have diggers out here tomorrow morning to get this going and we will not need to be here until he is doing the indoor work and the inspector needs to come back. He will keep us posted so we can plan on when we need to be here, and we can reach him personally via cell phone, if needed. It still isn't going to be a cheap fix, but I feel a million times better paying this guy for the work than I would have paying the original company. We may actually have a stove, oven, and hot water by the end of the week...fingers crossed!
The moral of the story is that the John Moore jingle did ring true in our experience. If you call John...you do get Moore...more headaches, more waiting, more debt, and more incompetence. Learn from our mistakes...even when there is a seemingly emergent situation, do not just go with the first name/company you know in the field. Shop around. If we had gotten multiple quotes when this first happened, we'd probably have gas by now.
Disclaimer: This post is meant to relate my personal experiences and opinion, it is not intended to malign any organization, company, or individual.
Edited to add: John Moore did release the permit like we asked, so we didn't have to file paperwork with city hall. They also refunded us the $300 we paid for the permit to be pulled originally. So we lost 12 days to this fiasco, but at least we didn't lose any additional money!
Friday, September 09, 2011
To Do:
Cal I -> 1.1-1.4 (by Wednesday)
Medical Writing -> Read chapters 1 and 2 in The Complete Guide to Medical Writing (quiz 9/15)
HIST -> Review chapters 17-21 for exam (either 9/15 or 9/20)
POLS -> Read pgs. 354-62, 367-86, 401-16; make cheat sheets (exam 9/14)
CSP -> Call zoo RE: group volunteering; read pgs. 7-122 in Service Learning; read pgs. 219-245 in Navigating Research; post to discussion threads for chapters
Personal -> Call pulmonologist RE: visit cost as self-pay; call insurance RE: reimbursement policy; do income verification check for insurance; call HHC RE: pump servicing and coverage under possible new plan, call HHS RE: switching plans; call possible new plan RE: coverage of therapies and DME
Drudgery -> Laundry; waiting for the city to come inspect the gas line so the plumber can start work on it (yes, STILL NO GAS HERE!)
What are you up to today?
Medical Writing -> Read chapters 1 and 2 in The Complete Guide to Medical Writing (quiz 9/15)
HIST -> Review chapters 17-21 for exam (either 9/15 or 9/20)
POLS -> Read pgs. 354-62, 367-86, 401-16; make cheat sheets (exam 9/14)
CSP -> Call zoo RE: group volunteering; read pgs. 7-122 in Service Learning; read pgs. 219-245 in Navigating Research; post to discussion threads for chapters
Personal -> Call pulmonologist RE: visit cost as self-pay; call insurance RE: reimbursement policy; do income verification check for insurance; call HHC RE: pump servicing and coverage under possible new plan, call HHS RE: switching plans; call possible new plan RE: coverage of therapies and DME
Drudgery -> Laundry; waiting for the city to come inspect the gas line so the plumber can start work on it (yes, STILL NO GAS HERE!)
What are you up to today?
Wednesday, September 07, 2011
Following Up.
Today was KayTar's follow up with her mitochondrial specialist. It wouldn't be a visit to that particular clinic without a little insurance drama, so at check in they told me AGAIN that they don't take our insurance and I explained AGAIN that the doctor is in network for our insurance and we have seen her successfully before and our insurance has paid for it. She called billing and said that we would have to pay for the visit out of pocket and then file for reimbursement...it is never awesome to hear you are going to have to pay 300-400 dollars our of pocket as a surprise, but we didn't want to back out of the visit at that point, so I agreed. I have no doubt my insurance will pay as I've called them about 15 times about this situation and they always, always insist the doctor is IN NETWORK and needs no further authorization. It is a very frustrating situation, but hey...a few years ago we didn't even have insurance to get frustrated about, so I know it could be much worse than this. And the truth is that insurance is more than willing to pay, the clinic just doesn't seem to want to do the legwork.
On to the actual follow-up part of the appointment...R came with us again, in case KayTar needed a little attention while I was talking to the doctor, but it was unnecessary (but fun to have her company, as always) as KayTar was completely entertained with the two brain models that were in our room, along with a clear plexiglass head to put them in. She pretended to do brain transplants for most of the visit. At one point she changed from a brain surgeon into a zombie and cut the brain into "brain pie" and served it up to us from the head/bowl. So many fun things to do with brains! She really, really wants her own model brains (and tuning fork) now. As for the medical part of the visit, KayTar's labs came back within normal limits and her MRI was read as normal, too. I'm somewhat confused about the MRI as she has had 2 previous MRIs that were abnormal. I'm not complaining about a normal brain, but I'm not really sure how it went from abnormal to normal. She hadn't looked over her previous films (she didn't realize she had them), so she couldn't really explain it to me. She did say that certain metabolic diseases can present with brain abnormalities that later normalize. Also, two vials of KayTar's blood from last time was lost, so we had to re-draw labs for the acyl-carnitine panel and glycosylated tranferrin panels. KayTar was not a fan of the lab work, BUT the tech got it in one stick, so I was pretty pleased. The doctor said she is not going to diagnose her with mitochondrial disease because in looking through KayTar's medical files, she thinks that KayTar may have a treatable metabolic disease and she isn't ready to stop looking at this point. After mitochondrial disease is diagnosed, the search is off and we're not there yet. I nodded my head and said, "Yeah, okay." and she said, "Wow, you took that better than I thought." I guess some people come in there really looking for a diagnosis and take it hard when it isn't there right away....or maybe she is secretly reading my blog (yeah, right) and knows how much I want an answer for all of this. Yes, I'm looking for a diagnosis, I practically dream about it...BUT I want the right diagnosis when all is said and done. We started seeing this doctor because we were told she is the kind of doctor who cares about finding the right answer, whether it is mito or something else, and thinks a diagnosis is important. In our experience, many doctors don't feel this way, so I'm glad that she is committed to helping us figure it out, regardless of what the ultimate outcome is. She is referring us to a metabolic geneticist that she works with regularly and after we see her, the two of them will formulate a plan together...it will likely include another fasting study which is my absolute least favorite test of all time. I wonder if *I* can be sedated for this one. ;)
After the appointment, M (who is my savior in this clinic, she has been so patient and helpful through all of this which allowed me to keep my sanity!) came in and said we didn't have to pay up front, because she told billing they had to bill my insurance, because we already have proof they will pay. She told them that they either need to get their doctors pulled out of our plan so we can apply for out-of-network care or just agree to bill the insurance. Yay! But then I came home to a message about KayTar's pulmonology visit next week at the same facility...they said if we don't self-pay up front for the visit, they won't see us. The same goes for further appointments with the doctor we saw today. Since the metabolic geneticist we are being referred to also works out of this office, I'm sure the same goes for her. AGH! It took over an hour to get KayTar's pulmonology visit scheduled because the schedulers were insistent that they do not take our insurance...so I know the same will happen when I call to get her in with the geneticist. All of these doctors are in our provider directory, but that office just doesn't want to deal with our insurance because the clinic is not contracted with our plan. So now we are looking at possibly switching plans to see if we can get both our hospitals and all of KayTar's medical team covered, which span the two different hospitals and affiliations with two different medical schools...but I'm a little scared to switch based on a provider directory, as I've learned just how WRONG they can be! All of KayTar's doctors are listed in our current directory, but we are still having major issues with it. It doesn't really seem right that if insurance is willing to pay, the clinic can still keep us from being seen, but it seems there is little that I can do about it. I guess I should look at it as a learning experience, because by the time I am on the provider side of the medical billing process, I'm going to know more than I ever wanted to know about things like this!
On to the actual follow-up part of the appointment...R came with us again, in case KayTar needed a little attention while I was talking to the doctor, but it was unnecessary (but fun to have her company, as always) as KayTar was completely entertained with the two brain models that were in our room, along with a clear plexiglass head to put them in. She pretended to do brain transplants for most of the visit. At one point she changed from a brain surgeon into a zombie and cut the brain into "brain pie" and served it up to us from the head/bowl. So many fun things to do with brains! She really, really wants her own model brains (and tuning fork) now. As for the medical part of the visit, KayTar's labs came back within normal limits and her MRI was read as normal, too. I'm somewhat confused about the MRI as she has had 2 previous MRIs that were abnormal. I'm not complaining about a normal brain, but I'm not really sure how it went from abnormal to normal. She hadn't looked over her previous films (she didn't realize she had them), so she couldn't really explain it to me. She did say that certain metabolic diseases can present with brain abnormalities that later normalize. Also, two vials of KayTar's blood from last time was lost, so we had to re-draw labs for the acyl-carnitine panel and glycosylated tranferrin panels. KayTar was not a fan of the lab work, BUT the tech got it in one stick, so I was pretty pleased. The doctor said she is not going to diagnose her with mitochondrial disease because in looking through KayTar's medical files, she thinks that KayTar may have a treatable metabolic disease and she isn't ready to stop looking at this point. After mitochondrial disease is diagnosed, the search is off and we're not there yet. I nodded my head and said, "Yeah, okay." and she said, "Wow, you took that better than I thought." I guess some people come in there really looking for a diagnosis and take it hard when it isn't there right away....or maybe she is secretly reading my blog (yeah, right) and knows how much I want an answer for all of this. Yes, I'm looking for a diagnosis, I practically dream about it...BUT I want the right diagnosis when all is said and done. We started seeing this doctor because we were told she is the kind of doctor who cares about finding the right answer, whether it is mito or something else, and thinks a diagnosis is important. In our experience, many doctors don't feel this way, so I'm glad that she is committed to helping us figure it out, regardless of what the ultimate outcome is. She is referring us to a metabolic geneticist that she works with regularly and after we see her, the two of them will formulate a plan together...it will likely include another fasting study which is my absolute least favorite test of all time. I wonder if *I* can be sedated for this one. ;)
After the appointment, M (who is my savior in this clinic, she has been so patient and helpful through all of this which allowed me to keep my sanity!) came in and said we didn't have to pay up front, because she told billing they had to bill my insurance, because we already have proof they will pay. She told them that they either need to get their doctors pulled out of our plan so we can apply for out-of-network care or just agree to bill the insurance. Yay! But then I came home to a message about KayTar's pulmonology visit next week at the same facility...they said if we don't self-pay up front for the visit, they won't see us. The same goes for further appointments with the doctor we saw today. Since the metabolic geneticist we are being referred to also works out of this office, I'm sure the same goes for her. AGH! It took over an hour to get KayTar's pulmonology visit scheduled because the schedulers were insistent that they do not take our insurance...so I know the same will happen when I call to get her in with the geneticist. All of these doctors are in our provider directory, but that office just doesn't want to deal with our insurance because the clinic is not contracted with our plan. So now we are looking at possibly switching plans to see if we can get both our hospitals and all of KayTar's medical team covered, which span the two different hospitals and affiliations with two different medical schools...but I'm a little scared to switch based on a provider directory, as I've learned just how WRONG they can be! All of KayTar's doctors are listed in our current directory, but we are still having major issues with it. It doesn't really seem right that if insurance is willing to pay, the clinic can still keep us from being seen, but it seems there is little that I can do about it. I guess I should look at it as a learning experience, because by the time I am on the provider side of the medical billing process, I'm going to know more than I ever wanted to know about things like this!
Friday, September 02, 2011
It must be Community Helpers week.
On Monday, I found out my credit card had been cloned. Awesome, right? Last week, I tried to buy something in the school bookstore and my card was declined. No big deal...our credit union card is notoriously bad at not scanning correctly. Later in the day, I tried to get lunch at Smoothie King and the card was declined again. I called Josh to be sure there was money in the account and there was plenty. The next day, I tried to get gas and the pump gave me attitude about going in to see the cashier. I was alone, so I did...and the charge went through just fine from inside. I chalked it up to another bad scan. I bought groceries this weekend without issue. Then on the way to the GES on Monday, I stopped for gas. It didn't take my card again, but I had KayTar with me so I just paid with a different card. Then in the parking garage it didn't take my card, but that one only takes my card once out of every 15 scans...so it wasn't odd. Then we stopped at McD's for breakfast on the way home and my card didn't work. I had them try a second time...no dice. So I called Josh, who called the bank, who told him my card had been used in Ohio last week and was shut down due to suspicious activity. Oy. How did I not notice it?! Because I usually use debit and that was working fine, only the credit section had been locked down. So places that auto-run it as credit were the places that it was being declined. When I went into the gas station, I paid with debit. When I bought groceries, it was debit....and so forth. Monday night we had to go to the police department and file a report so the bank will give us our money back. Thankfully, they didn't go wild with it, because our financial aid had just been deposited and they sure could have done some damage. Instead they spent $70-something at a feed store and $6-something at Walgreens. Big spenders!
Yesterday, on the heels of an already rough afternoon involving my asthma/traffic/nearly running out of gas/being late to pick up the kids, we walked into the house after school and I thought I smelled gas. I called Josh, who is out of town and couldn't be of much assistance, and then called my dad. He came right over and said he didn't really smell anything, but he checked the gas outlets in the house and then headed to the backyard. He came back in and said, "Grab the kids and their stuff and get outside." YIKES. We had a major leak back there, the drought has caused the ground to shift and it pulled the gas line completely away from the pipe that goes into the house and gas was just pouring out. My dad backed his truck out of the driveway and took the kids to sit in it while I frantically grabbed important KayTar things like her pump bag, feeding bags, and formula. I went to sit with him while my dad unhooked my garage door from the automatic opener and backed my van out. I tried called our gas company while my dad called the fire department. It took me forever to get a REAL PERSON on the phone and then they kept passing me around. Finally, in a loud and exasperated voice said, "I HAVE A MAJOR GAS LEAK AT MY HOUSE AND NO ONE WILL TALK TO ME!" She apologized and took my information, but by that time the fire department was already pulling up. My dad told me the fire department had reported it already. I guess the gas company will actually take calls from the fire department! I begged my dad to run in for KayTar's blankey as she was getting hysterical about it being in the house. As we were sitting in the car, our cat Peanut ran in the house and poor BubTar started crying. I went and brought the cat out, but our guinea pig, dog, and snake were still inside and BubTar was so worried about them. I tried to reassure him that the firemen were taking care of the problem and the animals should be fine, but I was going through a few list of things that I desperately wanted out of the house in case it was all going to go KA-BOOM at any moment, so my reassurances were probably a little strained. Evidently my internal list of priorities is: the kids, KayTar's feeding pump and formula, KayTar's blankey, the animals, alllllll of our photos from my hard drive, KayTar's meds, and my camera. The fire department shut off the gas and checked the house for gas levels and we got the all clear. WHEW. The gas guy arrived and took our meter away. We have to have new piping laid from the fence where the meter is to the back wall of the house where the pipe comes out of the ground and enters the house. The plumber said that they have to pull a permit before starting work, so hopefully it will get done later today and we will have gas restored in a day or two. It was frustrating and a little frightening, but it could have been worse. KayTar flipped the lights on before I smelled the gas (which is a no no) and I just cringe to think what could have happened! We are all safe and sound, though, and very thankful things played out the way they did.
But seriously, if we could get through the rest of the week without any additional run-ins with community helpers, I'd be pretty pleased.
Yesterday, on the heels of an already rough afternoon involving my asthma/traffic/nearly running out of gas/being late to pick up the kids, we walked into the house after school and I thought I smelled gas. I called Josh, who is out of town and couldn't be of much assistance, and then called my dad. He came right over and said he didn't really smell anything, but he checked the gas outlets in the house and then headed to the backyard. He came back in and said, "Grab the kids and their stuff and get outside." YIKES. We had a major leak back there, the drought has caused the ground to shift and it pulled the gas line completely away from the pipe that goes into the house and gas was just pouring out. My dad backed his truck out of the driveway and took the kids to sit in it while I frantically grabbed important KayTar things like her pump bag, feeding bags, and formula. I went to sit with him while my dad unhooked my garage door from the automatic opener and backed my van out. I tried called our gas company while my dad called the fire department. It took me forever to get a REAL PERSON on the phone and then they kept passing me around. Finally, in a loud and exasperated voice said, "I HAVE A MAJOR GAS LEAK AT MY HOUSE AND NO ONE WILL TALK TO ME!" She apologized and took my information, but by that time the fire department was already pulling up. My dad told me the fire department had reported it already. I guess the gas company will actually take calls from the fire department! I begged my dad to run in for KayTar's blankey as she was getting hysterical about it being in the house. As we were sitting in the car, our cat Peanut ran in the house and poor BubTar started crying. I went and brought the cat out, but our guinea pig, dog, and snake were still inside and BubTar was so worried about them. I tried to reassure him that the firemen were taking care of the problem and the animals should be fine, but I was going through a few list of things that I desperately wanted out of the house in case it was all going to go KA-BOOM at any moment, so my reassurances were probably a little strained. Evidently my internal list of priorities is: the kids, KayTar's feeding pump and formula, KayTar's blankey, the animals, alllllll of our photos from my hard drive, KayTar's meds, and my camera. The fire department shut off the gas and checked the house for gas levels and we got the all clear. WHEW. The gas guy arrived and took our meter away. We have to have new piping laid from the fence where the meter is to the back wall of the house where the pipe comes out of the ground and enters the house. The plumber said that they have to pull a permit before starting work, so hopefully it will get done later today and we will have gas restored in a day or two. It was frustrating and a little frightening, but it could have been worse. KayTar flipped the lights on before I smelled the gas (which is a no no) and I just cringe to think what could have happened! We are all safe and sound, though, and very thankful things played out the way they did.
But seriously, if we could get through the rest of the week without any additional run-ins with community helpers, I'd be pretty pleased.
Monday, August 29, 2011
Gastric Emptying Scan
KayTar had her gastric emptying scan today, or as she describes it, "I was taped to a table and shoved in a machine FOR HOURS!"
She was NOT a fan of being restrained. She let out a few peals of her patented, eardrum-rupturing KayTar screams as they taped her down, but she calmed pretty quickly with some help from Spongebob on the monitor. She couldn't use her hands, though, so I had to do things like rub her eyes or scratch her nose or wipe her tears. :( We rigged up her Gee so she could rub her lips on it as needed for comfort. Once she resigned herself to her fate, which happened fairly quick, it was an easy enough test.
We didn't get any results at the appointment, but our fabulous pediatrician called me with them this afternoon. A normal result is half-emptying in 60 minutes, KayTar half-emptied in 73 minutes, which is only slightly longer than normal. However, she was only given 3 ounces...so it took 73 minutes to empty out 1.5 ounces, which seems like a long time to move such a little amount. We've never done one of these before and the pediatrician doesn't have much experience interpreting the results, so she can't say if the rate of emptying is volume specific or stable across the board...so I don't know what to make of it until we see her GI on the 13th. These tests are the sort you take with a grain of salt anyway, so we'll see what her thoughts are before changing things up. For the time being, her 4 ounce feeds every 2 hours seem to be well-tolerated so we're sticking with it. Oh, and they saw her refluxing again in this scan, too. We may need to add in another medication to help control that. I'm on pins and needles for her appointments the next few weeks; we follow up with her mito doc next Tuesday, have our first visit with pulmonary the following Monday, and follow up with GI the day after that. Here's hoping we learn something new and useful from all of this testing!
She was NOT a fan of being restrained. She let out a few peals of her patented, eardrum-rupturing KayTar screams as they taped her down, but she calmed pretty quickly with some help from Spongebob on the monitor. She couldn't use her hands, though, so I had to do things like rub her eyes or scratch her nose or wipe her tears. :( We rigged up her Gee so she could rub her lips on it as needed for comfort. Once she resigned herself to her fate, which happened fairly quick, it was an easy enough test.
We didn't get any results at the appointment, but our fabulous pediatrician called me with them this afternoon. A normal result is half-emptying in 60 minutes, KayTar half-emptied in 73 minutes, which is only slightly longer than normal. However, she was only given 3 ounces...so it took 73 minutes to empty out 1.5 ounces, which seems like a long time to move such a little amount. We've never done one of these before and the pediatrician doesn't have much experience interpreting the results, so she can't say if the rate of emptying is volume specific or stable across the board...so I don't know what to make of it until we see her GI on the 13th. These tests are the sort you take with a grain of salt anyway, so we'll see what her thoughts are before changing things up. For the time being, her 4 ounce feeds every 2 hours seem to be well-tolerated so we're sticking with it. Oh, and they saw her refluxing again in this scan, too. We may need to add in another medication to help control that. I'm on pins and needles for her appointments the next few weeks; we follow up with her mito doc next Tuesday, have our first visit with pulmonary the following Monday, and follow up with GI the day after that. Here's hoping we learn something new and useful from all of this testing!
Sunday, August 28, 2011
Making Play-Dough!
Last Sunday, KayTar and I made some pink play-dough with an online recipe a friend shared with me. I'm not a crafty-type, but it seemed simple enough. The hardest part of the whole thing was finding cream of tartar! I seriously couldn't find it in the store, so I just stole/borrowed a little from my mom's pantry. Making it was so simple (we made some purple today!), and the play-dough was so soft and fun, I thought I would share the recipe here! You get a pretty good yield from just one batch (it fills two of these little tupperware containers).
1 cup flour
1 cup water
1/4 cup salt
1 tbsp vegetable oil
2 tsp. cream of tartar
And the food coloring of your choice!
Put it all into a pot and stir it together, then cook it over medium heat until it globs together.
Once it congeals, drop it out onto wax paper to cool, then knead it a few times as it cools.
Once it cools, it is ready to be stored or played with!
I hope you enjoy it as much as we have! :)
Friday, August 26, 2011
Letter to the Teacher, 2011 edition
Hi! My name is KayTar. I'm so glad to be in your class this year! My mom helped me write this letter to tell you a little bit about me that might help our year go more smoothly.
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If you've read the previous years of her Letter to the Teacher (2008, 2009, 2010), you may notice that we took her neurological episodes off altogether this year. It has been over TWO YEARS since she has had one. Whoa. The letter may be growing a little every year, but it still feels good to cross that one off.
I am an excellent reader. I usually read 1 chapter book every 2 days, so I will be taking a lot of AR tests and checking out a lot of library books this year. I learn very well from written word, especially because I don't always hear verbal words or instructions as well. When I watch TV at home, I like the captions to be on, so I can follow what is happening. I think it would help me a lot if my reading skills were used in class to help me keep up with what is happening in our room! Sometimes I get distracted or forget what I am supposed to be doing, so my other teachers have provided written instructions for classroom tasks and schedules and it helps me a lot.
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I can't hear with my left ear. I used to wear a hearing aid, but my hearing got worse and it stopped helping. Because I don't hear as well without it, make sure you speak clearly to me. If you are helping me do something, stay on my right side. It is hard for me to filter out background noises and I might have a harder time focusing, especially if the room is noisy. This is another reason it helps me to have written instructions.
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I wear glasses to help me see clearly. I am nearsighted, so my glasses help me to see things that are farther away. I like to be very close to what I am looking at usually, because my eyes work best when I am up close.
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I am a little slower than my friends and I get tired easily if we are walking long distances so I might need extra help. Sometimes I fall down, because I'm not always steady on my feet, especially when I am distracted. I often have a difficult time keeping up with the class when we have a fire drill and I might need 1 on 1 help from a grown-up when that happens. My doctors think I have a disease that causes me to be weaker than my friends and causes me to run out energy much quicker than they do. It may seem like I am being lazy at times, but my body just cannot always keep up. Because the muscles in my hands get fatigued and weaken easily, I am supposed to trial a word processor to help me with writing work. If I get very run down or tired, I may need to rest in the nurse's office or have my glucose checked. The nurse is very familiar with my medical needs. I get tired much quicker when I'm even a little bit sick and there may be times I need to sit out of PE during the year. If I ever complain of being dizzy or wobbly or say my legs aren't working, I need to see the nurse right away.
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I am very sensitive to heat and cannot be outside for very long in the heat of the summer months. While it is so hot out, I may not do so well during recess if it is in the afternoon. Sometimes being out in the heat causes me to run a fever, even if I'm not sick. If I am having trouble with the heat at recess, I may need a quiet indoor activity while my class is outdoors.
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Some days throughout the year, I am very light sensitive and can't bear to be out in the sunlight. I have magic lenses in my glasses to help, but some days they don't help enough. If my friends are going outside and the sunlight is bothering me a lot, I might need to go sit in the nurse's office or with another class while my friends play outside. Other days it doesn't bother me as much and I enjoy playing outside with my friends very much!
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I get migraine headaches and if I ever complain of head or eye pains, or changes to my vision, send me to the nurse immediately for medication, even if it doesn't seem to be keeping me from participating. It is important I get my medicine at the beginning, so they do not get much worse.
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I have asthma and if you notice me coughing a lot or coughing so hard that I gag/vomit, I need to be given 4 puffs from my Albuterol inhaler with my yellow spacer mask.
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I don't like to eat much, so at lunch or snack time I might choose not to eat. My mom will send something that I like every day, just in case. The textures of some foods might make me gag, either by sight or touch. I try my best not to touch these foods or get too close, so if I ball up my hands or say "No!" it means it is probably the kind of texture that will make me gag. If it gets too close to me I might push it away from me to protect myself. Sometimes just thinking about these things might make me feel sick. I have a g-button and a special feeding backpack that give me all the things I need to be strong and healthy. I also need the nurse to check my glucose to be sure my body is getting enough of what it needs. There are times when my tummy just doesn't work right and I vomit even when I'm not sick. The nurse knows how to help me and will call my mom if she thinks I may need to go home, but many times I finish the school day even if my tummy is acting funny.
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My lips and tongue have gotten VERY big a few times and my doctors aren't sure why this happens, if you notice my lips swelling, or if I say, "My tongue hurts." it means I'm having an allergic reaction. Take me to see the nurse immediately. I need to have 1.5 teaspoons of Benadryl per my g-button. If I have trouble breathing or stop breathing, I need to be given my EpiPen Jr. Call my mom immediately if I have signs of an allergic reaction.
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My colon doesn't work quite right and I have to take medicine to help it out, because of this, sometimes I have potty accidents. The nurse will have supplies to handle this if it is an issue. At bathroom breaks, it might help if you reminded me to try to use the bathroom even when I say I don't need to. I may need to wear pull-ups some days when I am having some trouble with this.
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I'm so excited to be in school this year and I know I will have lots of fun in your class!
Your new student,
KayTar
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If you've read the previous years of her Letter to the Teacher (2008, 2009, 2010), you may notice that we took her neurological episodes off altogether this year. It has been over TWO YEARS since she has had one. Whoa. The letter may be growing a little every year, but it still feels good to cross that one off.
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