Attack of the Lalaloopsy!

One day while KayTar was doing her homework, she mentioned that BubTar was creeped out by her Lalaloopsy dolls. We decided to give him a little scare and KayTar told me to put her in his bed, on his pillow, face up, body turned backwards. It.was.AWESOME! 

The first time was so fun that it turned into a little game and I started leaving it places to surprise him!

Keeping his shirt warm...

Practicing his sax...

He left her for me one night while I was showering...

One of my favorites!

Ready for school...

This one was THE BEST! He actually yelped.
He was looking around his room for her and
didn't look at the ladder until he was on it. AGH!

Hiding in his sock drawer...

Waiting for him to pack his lunch...

In the car, waiting for him one morning...

On his reading throne, enjoy Calvin and Hobbes...

One weekend, I let him help me hide her for KayTar, too!

Waiting in her wheelie...

Hanging out on the IV pole...

Hiding in her lamp...

The doll has been on hiatus for a couple of weeks now, because I think we were all getting a little too used to it...but I predict she will show up again soon! :)

She is on to me...

On Monday, KayTar was VERY chatty. KayTar is always chatty, but this was a lot, even for her. We went to Build-A-Bear to get her a limited edition sock monkey and she talked all the way there and all the way home and all the way through dinner. After dinner, we had the following conversation...

KayTar: Can I watch some TV now? 

Me (and my tired ears): Please do! 

KayTar: Alright, alright...I'll shut up. 

Me: I didn't say that!! 

KayTar: What you said was a NICE way of saying that. 

Me: *copious laughter* 

Josh: Well, there goes subtlety! 

That kid doesn't miss ANYTHING! Hilarious.

KayTar and Lily, the monkey with medical problems.

The cashier asked her, "Oh, it is a doctor monkey?" 

And KayTar said, "No, this monkey's got medical problems!"

Of course.

(Almost) Wordless Wednesday: Love Notes

A few weeks back, KayTar asked me to write her a little note to take to school and since then I've been writing little love notes and hiding them in her sweater pocket every day. This week I got a little more creative and went with a theme, ANATOMY! Or "doctor humor" as KayTar referred to it yesterday.

Bet you can't do this!

So KayTar has this little trick that her knee can do, wanna see?



Interesting, right? "It's like my knee is doing push-ups!" I'm not exactly a medical professional, but I'm pretty sure that is not the direction a knee is supposed to move on purpose. Anyway, I don't know how long she has been able to do this for, but sometime in the past couple of months, I would feel her popping it while we were cuddling at night. She also says that she does it in class when she feels bored (why twiddle your thumbs when you can dislocate your knee?). Then she showed her music teacher and class (poor Mr. N! he is a little sensitive about weird medical stuff), and he had her show the nurse, too. We kind of wrote it off as just one of those weird KayTar things (and musculoskeletal issues are soooo far down on the triage list around here), but as it was discussed more, I thought it might be at least a mention to her OT on Friday.

The verdict is: Nope! Not normal! And yup! It will cause damage and make her more prone to injury!

She said that if she keeps moving it that way, within a year or two she will start to have pain and she is likely to tear a ligament (ACL/PCL) and need surgery/bracing. She is going to talk to the PT and we'll start work on getting it tightened up and hopefully avoid pain/injury/surgery. Glad I asked!

Settling In

Well, I last left you on the edge of your seats (or so I like to imagine) waiting for the arrival of a FOURTH oxygen regulator and with KayTar's sats misbehaving at school. Since then, we regulator has arrived (though not on Thursday when I spent my whole day waiting for it...nope, I had to spend most of the following Friday waiting for it, too!) and it has been working, for the most part. We did have an issue with it losing its seal on the first day she used it at school, but KayTar got out the T-handle and shut the valve ON HER OWN! I didn't even teach her how, she just learned by watching. She called it "the axe method" because she thinks the T-handle looks like a mini-axe. What a big kid she is turning into! Since then we have been taking it off the tank after every use and putting it back on when she needs it and haven't had anymore issues (KNOCK ON WOOD!). We shouldn't have to take it off, except to refill the tank, but whatever...if it is working, I'm happy.

As far as her sats...meh. She is below the pulmonologist's cut off more often than we'd like and nearly every day in PE. The plan this week has been to put her on oxygen for 30 minutes to an hour before PE regardless of sats (as long as it doesn't put her at 100%) to give her body a break and perhaps increase its ability to meet her needs during the 30 minutes of PE. In addition, if her sats are low at her lunchtime check, we just put her on oxygen after lunch and keep her on until PE. If her sats are low in PE, then she gets oxygen at that point and keeps it on through music. So far, it does not seem to be making her sats any better DURING PE, but my hope is that giving her a body a break before/after that exertion will minimize any ill effects from it. She enjoys PE and I do think it benefits her to stretch her abilities (they encourage her to participate, but always allow her to self-modify)...this week she walked a MILE (or so she told me, 7 stamps=1 mile and she earned 7 stamps). KayTar walked a MILE! I probably would not have thought it possible and I definitely would not have allowed/asked her to push it like that in real life, but she did it (and besides her oxygen issues, she handled it well)...which is why I think there is a benefit to her participating in PE. I don't want to pull her out because of the low hanging sats, but putting her on oxygen during that madness (there are a TON of kids in PE) isn't feasible either. So for now, we're going to keep plugging along like this, tweak some things, and see how it goes. The pulmonologist might have a different plan for us when we see her in November, but we'll cross that bridge when we come to it.

It is a relief to finally have reliable equipment for her (though, I'm totally scared to try the regulator on the other 2 tanks we have because I'm afraid it will break!) and it feels good to be settling into a routine and have some rough form of a plan in place. It isn't perfect and we'll have to tweak it many times, I'm sure, but the worst part of new medical needs/new equipment is all of the unknowns. It feels like the answer to every question becomes "I don't know!" and I hate living like that. Once we get to a place where we have some idea of what direction to head and what our day to day might look like, I feel much better about it. Now we know that on most healthy days, KayTar will likely need oxygen at least part of the day, and on most sick days, KayTar will probably need oxygen most, if not all, of the day. We may not know ALL of the answers, but I can definitely settle for knowing one or two!

Catching Up: Summer Vacation!

I realized I never posted about our little trip this summer. We went to Jellystone Park (and brought Josh's littlest sister along, she is 9 months older than BubTar) and stayed in a cabin for a few days. The kids loved the water park and had a great time!

Regulators.

I am at home today, waiting on a FOURTH regulator from the home health company, as we have had THREE malfunction on us since last week. THREE!

The first one worked great initially. We used it on the E tank for about 3.5 weeks without any issues. Then we got the little M6 tank, put the old regulator on it, and sent it to school with KayTar...and it blew. It kept blowing. The HHC replaced it.

The second one worked great when we first put it on, but within an hour of being on the tank...it blew! And kept blowing. The HHC replaced it with an ADULT regulator, thinking maybe the pediatric regulators were faulty. The RT told me that we were the only ones having issues with these new regulators. Great!

The third one seemed to work great initially. I tried it on both tanks and it felt VERY secure. I sent it to school on the M6 tank...and it blew! I thought that maybe I hadn't secured it well enough (because it made a pretty tight seal and I bruised my hand with putting it on/taking it off the tanks the night before), because eventually the nurse did get it to run for KayTar at school for a while after reseating it a few times.When we got it home, I cracked the tank and turned on the regulator and KA-whoooosh! Grrr. We've been trying to get it to work, because I just can't believe we have had so many faulty regulators...but nothing is working. I even tried it on the E tank, but it KA-whooshed and it was like 10 times louder. I seriously JUMPED back.

I've been reading about regulators and trying to figure out if we might be doing something that is causing this to happen, but I can't seem to find any answers! However, I did realize that the only thing that changed when we went from Working Regulators to Non-Working Regulators was that we started using the little M6 tank. The tank itself looks fine. I don't see any imperfections. But I think possibly somehow that tank is causing these regulators to break..it is the only theory I can come up with that makes any kind of sense. If it was something WE were doing incorrectly, this would have been happening since the beginning...but we used her E tank for 3.5 weeks without any problems. If it was really faulty regulators, I would believe one...maybe even two...but THREE? In a row? It just doesn't seem likely. So I'm at home today, waiting for the RT to come by and either swap out a new regulator with the intention of ONLY using it on the E tank...or with a new regulator and a new M6 tank. It is almost 2 and I haven't heard from her yet. The tank and regulator are at school with KayTar in case she needs it (with the hopes the with reseating, she can get enough O2 without it blowing), so I need to go get it when the RT is headed this way. Hopefully she calls in advance and doesn't arrive when I am out picking KayTar up...like on Monday! Most of all, I hope we can get this figured out for good...so we can have a reliable portable oxygen system for KayTar!

She was patting her tank like she was burping a baby and
said, "My baby has gas!! Get it? Because oxygen IS a gas?!"

PS: While I was writing this, the nurse emailed me and said KayTar had low sats in PE and she was attempting to start the O2, but it wouldn't make a seal at all...so she had to go without. AGH! We have to get this figured out!

Oxygen! Part 2

I finally talked to the pulmonologist's nurse on Thursday. She said that Dr. J wants KayTar on oxygen when her sats hit 95% or below. I asked her the same question in about four different ways, hoping to get a different answer, but NOPE! 95% is when she needs to go on oxygen, no matter how I phrased it. The truth is that I was pretty deflated by this news. We've been checking her sats both at home and at school this week and she is RARELY over 95%...in fact, even with my low-ball order of at/below 92%, she still has been on oxygen twice at school this week! When I heard the official orders, I felt kind of like this...sideways and all. LOL!

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I understand the orders, I do. If KayTar's body is already struggling to make ends meet and running sub-optimally, then allowing her to sat low and experience chronic, even slight hypoxemia, is not ideal...especially when we have the ability to fix it for her. I get it. I just feel a little fussy about it! Initially I was worried about how KayTar would feel about it because when she first started overnight oxygen, she said, "I'm glad I don't have to wear this at school, people would think I'm weird!" but when I talked to her about the fact that her needing to wear oxygen in class might be more than hypothetical, she said, "That'd be okay...and I could build my muscles from carrying the bag!" I've obviously got a lot to learn from that kid, because I was not feeling so swell about it!

We didn't want to rock the boat at school too much, but the (best) nurse (in the universe) offered to check her sats a little more frequently on Friday, in case the two little snapshots (before lunch/during PE) of her oxygen levels were not entirely telling...but still, at 2/3 checks she was below the cut-off and she ended up on oxygen in the afternoon. I don't know what it means or what the best way to proceed is, honestly. Maybe her sats are running low due to the infection she had LAST week or maybe they are always like this. Maybe we should just keep her on oxygen all day at school when she is in the classroom and PE (and let her go off of it for lunch/specials), since she is low so often and it isn't feasible to monitor her frequently. Maybe she just needs a boost a couple of times a day. Maybe, maybe, maybe! At this point, I don't know what our plan for Monday will be (oh, and to complicate this further, the regulators on the small tank seem to be malfunctioning!)...but I've at least accepted that we do need a plan! So far today, her sats have been good at every check...so I am still holding out a little hope that this is a temporary set-back due to the respiratory infection she is just getting over and maybe she will just need additional supports when recovering...but if that isn't the case, we'll deal with it.

The tough part is that when we "lose" something with her (or add supports/machinery/whatever, depending on how you look at it) it is usually permanent...so unfortunately, I have FEELINGS about such things which distract me from the important things in life, like the fact that she is here with us and she is HAPPY and she is "healthy" and we have the ability to support her in these ways here at home or at school and we have precious people in our lives who help us put her needs first and care for her when she is out in the world...so many blessings!! So instead, I'm choosing to feel like THIS (okay, maybe not quite THAT happy, but you get the idea)!

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Oxygen!

KayTar has been on overnight oxygen for almost a month now and I think it is going really well. She started off being fairly bothered by the cannula, I had to cut the prongs down a little and use bandaids to secure to her face (tightly) so she would leave it on her face AND so it didn't wiggle and bother her. Then last week, she told me that she didn't think  I needed to tape it anymore and she has left it on perfectly since then! We switched out cannulas last night and I didn't need to cut the prongs down this time! From a compliance standpoint, she's doing great with it!

She wakes up easier in the morning (even school mornings!) and seems to be getting better quality sleep. Last year, she got her feed in her sleep, Josh dressed her while she slept, and he carried her downstairs and she slept some more on the couch. For the most part, she is awake by the time her feed finishes this year. This morning she was a little sleepier because she it is her first day back after a week out and she still isn't feeling 100%. Nighttime alarms (when healthy) have also been reduced since starting oxygen. She was originally prescribed 1/4 liter per minute for nighttime use, but a lot of times it is insufficient to keep her sats up. When she is healthy, she is using about 1/2 liter at night and satting about 99...but when she was sick, we got up to 1.5 liters and she was still satting 95-96 overnight. Obviously, when she is sick she needs more respiratory support than we knew prior to having a monitor here at home, but we are glad to be able to give her what she needs now! She has had some fairly low desats while sick, like down to low 80s/high 70s, and generally her sats are just lower overall, especially when sleeping. From a symptom management standpoint, she seems like she is doing great with it, too.

When the pulmonologist ordered the oxygen, she did so mainly for nighttime use, but also gave us the go ahead to use it as needed during the daytime. She said to keep her oxygen sats between 96-99 and be careful not to let her sit at 100% if on oxygen. Beyond that, it is kind of our call at this point. Prior to this recent illness, we hadn't used it during the day at all, but while she has been sick, we've used it on several occasions when we notice she is satting lower than she should be (usually under 95). At home, it is a really easy call to make. We have the oxygen available, she is just sitting around here, there is NO reason not to hook her up and give her a little boost. But she is back to school today and I'm SO uncertain as to what the right call is where her oxygen is concerned. I brought the pulse ox up to school and her tiny little M6 tank (which we need to get a pulse regulator for) just in case. I told the nurse that if she is at/below 92, go ahead and start her on 1/2 a liter. It is lower than we would let it sit at home, but at school there are more issues to consider, especially social issues. Oxygen is such an OBVIOUS sign that someone is sick and I don't really want her to have to draw that kind of attention unnecessarily. I know, I know, a g-button and feeding backpack don't exactly SCREAM normalcy, but it is subtler to me...or we're just both used to it and the necessity is undeniable. I also know that a wheelchair doesn't exactly announce HEALTHY CHILD COMING THROUGH either but again, KayTar clearly needs it when we are out and about AND she loves it. That makes it a non-issue for me. She isn't totally comfortable with the oxygen yet (though she is very accepting of it at home when it is needed and she has even asked for it at times) and when she first started using it, she said, "I'm glad I don't have to wear this at school, people will think I'm WEIRD." It is a harder call to make knowing that she feels self-conscious about it. In the end, her physical health is the most important factor, but it is easy enough for me to tell myself that she was managing before we started monitoring her and before we had oxygen to give her, maybe not managing well, but managing nonetheless...so is it worth it to make her wear it at school? And how low is low enough for it to be worth it?? So many things to consider! But for today, we set the bar at 92. I also put a call into the pulmonologist to get her opinion on what the cutoff should be and I'm waiting on a call back. I feel MUCH better about putting her on the oxygen during the day if it is the DOCTOR'S call, not mine. Sometimes it is hard to willingly put more on her little plate when there is so much there already! Luckily today her sats were good when checked and it was a non-issue. She is doing a lot better and I don't really expect she will need that kind of support this week, but it will be good to have some more detailed information from the pulmonologist, so I'm hoping she gets back to me soon!

Watch this!

I saw this short video at a moon, worn as if it had been a shell and fell in love! Definitely worth watching, especially if you are the parent of a special needs kid or one with complex medical needs.

PS: KayTar is still sick, we are going to the pediatrician this morning. Her school attendance is now officially 50/50 for the year!

First Fever!

The germs have landed! Man, those little buggers are quick. Friday evening we drove out to my parents' country house to spend a couple of nights. Everyone had a good time (and I took a LOT of photos that I really love), but on the last day, KayTar started coughing...then she felt puny...then she wanted her oxygen in the daytime...then her throat started hurting. Uh-oh! I was hoping that it was allergy-related so I gave her a dose of Benadryl, as she helped with the hay early in the day, but it didn't quite seem like allergies.

We headed home not too long after and had to stop on the drive to give her a dose of ibuprofen for her throat and hook up/turn on her oxygen (per her request). The requests for ibuprofen continued through the day and night when her previous dose wore off, so it was clear we were dealing with an illness and not allergies...and then the fever started yesterday. Last night it was up to 103.5 with ibuprofen...poor baby was so hot and her heart rate was on the high side, too. Her usual overnight oxygen dose is 1/4 of a liter and I had her on a liter and her sats were still lower than they usually are on 1/4 and dipped much more frequently. Nothing serious, but definitely showed her little body is working harder than usual!

She is missing her first day of school for the year today. She is a little congested, has a junky cough, sore throat, and fever. Pretty sure it is just our first viral visitor of the year...hopefully it won't hang around too long and she can get back to the business of being a second grader!

First Day of School!

Today was the first day of school for the kiddos! (I started yesterday.) Everyone was SUPER excited about their big day. KayTar was FINALLY going to have her own desk at school and BubTar was starting MIDDLE SCHOOL. Big, important stuff. KayTar had a rough night last night (and by extension so did I!); her oxygen sats were wonky, I had to jump out of the shower and go check her persistently alarming pulse oximeter (only a loose power cord, thankfully), and in the 5 hours I was asleep I had to tend to her 7 times or so for various reasons (monitor alarm/excitement/need a drink/too hot/alarm/is it morning?/stuffy nose). BubTar said he had trouble sleeping, too, because of his nervous excitement. In spite of the rough night last night, everyone woke up ready to face the day (except me, until my coffee kicked in)! Aren't they just the CUTEST?!

Second and Fifth Graders!

BubTar went inside KayTar's school with me and it was so nice for him. He got to see all of his favorite faculty members and get hugs and well wishes for his first day of middle school. KayTar was thrilled to go in and find her DESK! She has been waiting for a desk since Pre-K. Her teacher was just a tiny bit nervous about how the day would go, so I reminded her that I didn't have classes today and she could call or email for anything, big or small...but luckily, the day was total smooth sailing! After dropping KayTar off, we went to BubTar's new school and he walked himself in all on his own! I can't believe how big he is getting. MIDDLE SCHOOL!

After school, KayTar told me her day was "epic" and her desk was her favorite part, and second to that was EVERYTHING about second grade. On the way to get BubTar, the nurse emailed me that KayTar's Orajel was in the clinic (she has a nasty mouth ulcer right now), so we took a u-turn and headed back to her school, then back to his (roughly 15 minutes from campus to campus). It was a little nerve-wracking, but now I know how much time I have to spare between pick-ups! We got there in plenty of time and had to sit in the ridiculously long line for a while still. He was all smiles when I picked him up! That is a rarity! He had a great day, they didn't switch classes, but his homeroom teacher and classmates were nice. He told me about an upcoming school dance (dance!) and the rock wall in the gym. He said most of his classmates are GT kids, too. On the way home, I rolled KayTar's fingers up in the car door (ack!), but she survived. We ALL survived the first day! Then I came home and did mountains of back to school paperwork. Oy. (one of the forms was for permission for s-e-x ed class! school dances and s-e-x ed! AGH!) Aside from a few little blips, the school year is off to a great start!

Letter to the Teacher 2012

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.

I am an excellent reader. I’m almost done reading the Harry Potter series and I’ve read it all by myself! 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.

****
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. My audiologist wants me to use an FM system in the classroom this year.

****
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.

****
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. I use a wheelchair for long distances, so if we go on a field trip I will need it. Sometimes I fall down, because I'm not always steady on my feet, especially when I am distracted. I might 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. The muscles in my hands get fatigued and weaken easily, so I have special modifications in this area. 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, called mitochondrial disease. It may seem like I am being lazy at times, but my body just cannot always keep up. Even when I seem to be keeping up on the outside, sometimes my body is slowing down on the inside because it can’t keep up with all of the energy demands, so my mom and dad try to make sure I don’t burn too much energy on “outside” tasks so my body can use more energy for “inside” tasks and keep me feeling better. 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 and can help you make decisions about how best to care for me at school. 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.

****
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 (above 90 degrees), it is best if I do not do recess or outdoor activities in PE and I will need a quiet indoor activity while my class is outside. Sometimes being out in the heat causes me to run a fever, even if I'm not sick. It also makes my stomach have a harder time working properly and can make me feel badly in other ways, too. Sometimes if I play too hard even when the temperature is nice, it might make my stomach feel sick.  It doesn’t always happen immediately, but my tummy gets very slow when it is too tired and it makes me feel bad.

****
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!

****
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.

****
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. I have some other breathing problems and I wear oxygen at nighttime.

****
I don't like to eat much, so at breakfast or lunch 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. 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. If I say I feel too full or like I might throw up, send me to the nurse quickly and she can help me feel better by venting my tummy. I also need to keep my water with me at my desk so I can take small sips and get enough fluids during the day to help prevent headaches and other symptoms from getting worse.

****
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 [the nurse] immediately. I need to have 2 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.

****
Like the rest of my GI tract, my colon doesn't work quite right and I have to take medicines to help it out, because of this, sometimes I have small bathroom accidents. [the nurse] will have supplies to handle this if it is an issue. When I go see her before lunch, she will remind me to try to use the bathroom to help prevent accidents. Rarely, I may need to wear pull-ups when I am having more trouble with this, but I don’t want my friends to know! I am on new medications that are helping this problem more, so I hope we won’t have to worry about it much this year!

****

I know it sounds like I have a lot of things going on, but most school days go really well for me! I think EVERY day is the best day ever and I'm so excited to be in second grade this year. I love learning and I know I will have lots of fun in your class!

Your new student,
KayTar

You can find the letters for previous years here: 2011, 2010, 2009, 2008. 

[As an aside, I find it REALLY strange to call the nurse "the nurse" because she is SOOO much more than that to us these days!]

PFTs and Echo

KayTar's testing did not go so swimmingly on Monday. The pulmonary lab uses a different mouthpiece than our pulmonologist's clinic and KayTar started gagging straight away when she put it in her mouth. I was able to talk her through it, though, and with some encouragement she was able to to make it through the first few tests. Unfortunately, after the first try on a test where she had to hyperventilate and then attempt to exhale against a closed valve, she puked. Puking means the end of testing in the pulmonary lab, so that was that. We did not finish the testing without bronchodilators and we didn't even start the testing that is repeated after bronchodilators are given. I doubt we got anymore information than a typical in-office PFT...and that it will likely be re-ordered for her and she will have to be NPO beforehand. It also means we finished testing WAY ahead of schedule and had a huge gap between 10am when we finished and 1pm when her echocardiogram/bubble study was scheduled.

We went over to check in early, in case they had an opening...but they never did. We went to get lunch in the cafeteria and oh my gosh, do I ever LOVE KayTar's wheelchair. It is AMAZING! She can't push herself a LOT, but she can push herself some and it makes such a difference! In the cafeteria, instead of trying to push an unruly stroller and carry food and a drink, I just said, "KayTar, follow me!" and she could! If there was a tight corner, I could use one hand to help and the chair would move with ease! Just little things like being able to hold the elevator doors for her while she rolls in or opening a clinic door for her are SO much simpler. She loves the autonomy, too. I'm SO glad we opted for a wheelchair and not a medical stroller, she is very proud of it and it makes everything a lot easier for both of us. If you have a kid with limited mobility or even limited energy/endurance and are looking for a seating solution, I highly recommend the wheelchair route if they have any ability to self-maneuver. It makes more of a difference than I ever would have imagined and I'm SO glad that Heather gave me that advice when we were making our decisions. After lunch, we just hung out in the waiting area, hoping for a turn!

It was FINALLY our turn and KayTar was delighted to discover the orders had been changed so she did not need to have an IV. She said, "Yes! I wished it away!" Initially the orders were for a bubble study, but the cardiologist called the pulmonologist to see if she would change it to a normal echo because that should be sufficient to diagnose the problems she is looking for (which is what my wise friend Amber had told me! Mito moms always know the right answers!). The echo itself was no big deal, we just relaxed for about a half an hour while the tech looked at her little heart. I know nothing about cardiology, so I had no idea what I was looking at. I can tell you she has a heart and it was beating, but beyond that I'm clueless. I tried to get the tech to tell me if things looked mostly normal, but she was tight-lipped. Darn! I'm not sure when we will get the results, hopefully this week, though. I expect it to be normal. None of her docs have ever been concerned about heart problems and I think the pulmonologist ordered this as more of a rule OUT than a rule IN sort of test. It will be nice to get the results, though.

The end of testing days is always our favorite part, or as we like to call it New Monkey Time! :) This time around, I had asked KayTar if I could surprise her with a special sock monkey I found online and she initially said yes, but after such a long day of testing, she wanted an immediate reward and decided to go to the gift shop. We walked in and there was the SAME monkey I had picked out for her and it was her first choice, too! I love it so much! It was meant to be, I guess! On the way home, she said, "I just love today!" Not many people feel so fondly about a day that starts with puking and is spent at the hospital, but that is just how KayTar sees the world...the glass is ALWAYS overflowing, never half-full or half-empty!

Changes!

It has been a big week at the 'Tar household. Last Wednesday, KayTar received her awesome new wheelchair and her pulse oximeter. Yesterday, she received her oxygen concentrator and started on nighttime O2. A lot of changes and new routines to get the hang of. It might be a little sad and overwhelming if we hadn't been working towards these things for so long now (it was LAST summer when we started noticing KayTar's weird breathing...or lack thereof, and she has been too big for her stroller for AGES), instead I feel a lot of relief and maybe just a touch of new equipment anxiety. I'm relieved that insurance has readily agreed to cover what she needs and thankful we have time to adjust to the new stuff before the school year starts. I'm glad we have some new supports in place to help her feel better and have more restful sleep and more daytime energy, hopefully.

The wheelchair has been a very simple transition. KayTar loves it, so I love it. It takes more time to put it together and break it down to get it in and out of the car (which isn't exactly fun in this August heat), but the ease of use for both me and KayTar makes it WELL worth it. It takes about 4 steps to break it down, remove the seat cushion, remove the wheels (just have to press a button), flip up the anti-tips and the foot rests, and pull up on the handle in the middle of the seat. To put it together, you just reverse the process. Simple.

The pulse oximeter has been pretty simple, too. KayTar likes the probe on the big toe of her right foot at night. We only get 4 probes a month, so we've learned that after the first couple of days, we need to wrap it in a bandaid to keep it secure. I bought her some cute girly bandaids so her glowing toe can look cool. She doesn't have any complaints about using it. It has alarmed on several occasions, but she has resumed breathing on her own each time. It alarmed earlier this week on vacation and when I stood up to go check it, I discovered my leg was TOTALLY asleep and I collapsed. It was a spectacular fall. For the most part, she is satting a little lower than the pulmonologist wants her to...but not super low. We are going to do some spot checking at school (especially during PE) to see how she is managing there, too.

Oxygen is going to be the trickiest adjustment. She was very compliant during reading time and when I was cuddling with her at bedtime, but every time I went to check her, the cannula was out. It was a combination of it getting knocked out when she moved and her moving it in her sleep. I found it on her forehead and chin several times and once on her blankey. It is going to take some trial and error to figure out a good way to keep it in place! She said she didn't feel any better this morning, but I suspect you actually need to keep the cannula in to get the benefits of oxygen therapy! ;) We have a Respironics EverFlo compressor and an Ultrafill system to fill her portable tank if needed. It is pretty quiet and didn't seem to put off a lot of heat, which is a relief! BubTar did say that it sounded like Darth Vader was using the toilet (we are keeping it in the bathroom near their rooms)!

Monday is her echocardiogram, bubble test, and full pulmonary function testing at the hospital...then we may know a bit more about this respiratory stuff. In other news, her tummy has been giving us daily trouble recently (vomiting, feeling too full, stopping feeds early, venting out LOADS of air)...I don't know if we overdid it on vacation and things will normalize or if it is just something we will continue to deal with at this time of year. It is much less stressful this year, though, since we now have experience with dealing with it!

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Oxygen update: I cut the ends off of a bandaid and used them to secure the cannula near her nose and threaded the line up her pajama shirt and it worked! I don't know if it will be a long term fix, but she wore her oxygen all night last night! Of course we had to color coordinate with her pulse ox bandaid! :)

Wordless Wednesday: BubTar on Vacation

"Why are you in that wheelchair?"

KayTar's answer, "Because I can't walk a lot or I get too tired...and anyway, it is awesome! Want to see me to a wheelie?"

She amazes me with her outlook on life and she is so very proud of her wheelchair! We took it to the hospital yesterday for her audiology appointment and she was in heaven. SO happy to be out of that baby stroller so people won't think she is a baby! And for the record, she cannot wheelie yet, but she can lean back on the anti-tips for about 1 second and she thinks it is the coolest move EVER! :)

Wordless Wednesday: New stuff!

Big Pulmonology Appointment

Hey there! Long time no blog, right? We've been pretty busy having lots of summer fun and there hasn't been a whole lot to report (except that I turned 29 since I blogged last), so I haven't taken the time to write for a while...but our pulmonology appointment yesterday changed that!

1. She is ordering oxygen for KayTar. Based on KayTar's sleep study and prolonged central apneas, she is ordering O2 for nighttime use. It won't ventilate her when she stops breathing, but it will keep her sats higher at baseline and hopefully prevent big desats. Oxygen is generally more tolerated than BiPAP or VPAP, so it is an easier fix. We will also (HOPEFULLY) have her on a pulse oximeter (waiting for insurance to approve it), so we will know if she drops below 90 and won't be flying blind like we are now. The central apneas, strangely enough, match the same type of breathing (or NOT breathing) we see KayTar do during the day. Breathe-HOOOOOOOOOLD-Breathe a few times-HOOOOOOOOOLD. It is a long hold, too, like 30+ seconds. The pulmonologist said she tried holding her breath with KayTar on the video, but couldn't go as long as she did. She said she couldn't tell from the video if the nighttime apneas are like the daytime apneas in that she holds her breath after an inspiration, but it might be the same there, too. That may also mean that the little miss might be needing daytime O2 as well. In the office today, she sat at 90-91 for a while before coming up to 99. When I spot check her with our little pulse oximeter, I often see her low like that for periods of time. The sleep study showed her hanging out at low 90s when awake and asleep. While it isn't grossly abnormal, it is much lower than "ideal" and for a kid like KayTar who is already running on a system with some deficiencies, it may be having a bigger impact on her that it would a "normal" kid. So once we have the pulse oximeter and can get some solid daytime data, if we are seeing desats and lower-than-ideal sats much of the time, she wants her on daytime O2, as well. The catch here is getting insurance approval. Dr. J said it would be much easier if KayTar had an official mito dx, but hopefully we can get it covered anyway.

2. She is ordering an echocardiogram and bubble test, as well as full cardiopulmonary function testing. She doesn't really know why KayTar's sats are lower than they should be, so she is going to do some investigating before chalking it up to another symptom of KayTar-itis. KayTar will be having an echo to check her heart function and a bubble test to make sure there isn't any shunting or defects that might be contributing to her lower sats. KayTar said, "I get to blow bubbles?!" Unfortunately, no. ;) The cardiopulmonary function testing is evidently pretty involved, much more so than the little PFTs we do in the office. Dr. J said it would be a pretty tiring day for her.

3. Her PFT was abnormal. KayTar's previous PFTs looked good, but this one had a bit of an anomaly on it. One of her levels was considerably lower than it should have been and the pulmonologist said it is the one part that it is impossible to "fake" or affect by not giving enough effort during the test. So KayTar had to have a breathing treatment and repeat the PFT. The second one looked much better, but the Xopenex made her dizzy and have a headache. :/ The take home from this is that KayTar can't be off her Advair anymore...she's been off for a month or so because her asthma has been well-controlled without it and she hasn't been sick (knock on wood) without being in school, so we were letting her have a break since it seemed unneeded (we've done this in the summer before). Whoops! Guess that isn't the case and she needs to be on it year-round now.

4. Treating for Mycoplasma. KayTar tested positive for mycoplasma in her last lab panel. Mycoplasma is a bacteria that commonly causes walking pneumonia (but can do lots of other "neat" stuff, too). The labs indicated a previous/inactive infection, but Dr. J doesn't fully trust that to be the case and so she is treating KayTar with 14 days of clarithromycin to rule it out with certainty. However, she has a possible allergy to drugs in that class...she broke out in a full body rash during her one and only course of azithromycin as a toddler. I have never been sure it was a true allergy, I lean towards thinking she was treated with abx for a viral infection and the rash was due to the virus, not the antibiotics...but we've steered clear until now to be safe. The only other antibiotics to treat mycoplasma are quinolones and they are much harder on kids, so we are going to try clarithromycin first and see how it goes.

5. KayTar is funny. We had trouble finding parking yesterday and KayTar finally said, "I wish we could find ONE parking spot!" and we instantly found one. Then she quickly shouted, "And I wish I had a new car!" Alas, the second wish did not work! Also, a resident met with us before we saw Dr. J. At the end of reviewing the case, she asked KayTar, "Do you have any complaints? Anything I can help you with?" And KayTar said, "Well, I just wish it would stop raining so much so I could swim more!!" The resident laughed and said, "I'm sorry, I just don't have that kind of power!"

So that's that for now...this afternoon we brave the dentist (AGH!) and Thursday we see audiology!

Dumbledore!