Wednesday, November 30, 2011

You're It!

Earlier in the school year, KayTar's nurse and her PE teacher started playing a little game of tag. The first time I heard about it, Ms. B had snuck into the Nurse C's office and stuck a bunch of balloons all over the clinic that said, "You're it!" Of course, KayTar saw the balloons and wanted to know what was going on, so the nurse filled her in...and then they started plotting to get Ms. B back. They hid a balloon in a bag that KayTar took to PE and she got Ms. B to look in it. She sure wasn't expecting to get "gotten" by one of the kids!

Since then I guess the game has continued, but I hadn't heard much about it. But this weekend, KayTar was reading through her old emails and came across one from Nurse C about their previous plotting against Ms. B, so on Monday she went to school ready to get back into the fray. She came up with her own scheme in which Nurse C would put a bandage on a pretend ouchie and write "IT!" on it, then KayTar would get Ms. B to look at it during PE. That is exactly what she did! She went to PE with her fake wound and said, "Ms. B, I can't play in PE today because I've got a bad you want to see?" And then BAM! KayTar got her. Hahaha! Sneaky little lady.

Then today in PE, KayTar really fell and got hurt and Ms. B knew that if she sent KayTar to the nurse, she would think it was a rouse, so instead she iced KayTar's knee in the gym and then they doctored up a different fake wound (complete with and "IT!" note and fake blood!) and went to the nurse together. They told me that this plotting really cheered KayTar up from her actual ouchie. So as they got close to the clinic, KayTar started moaning and wailing about her injury (for dramatic effect), then she sat down in the clinic, pulled up her pants leg to show the nurse and said, "Gotcha!!!" and laughed herself silly! Then the nurse tended to her real injury before sending her on her way.

She is having such fun being in on this little game! She loves the scheming and playing her little parts. I enjoy hearing about the stories, both in emails from the nurse and from KayTar's retelling on the way home from school. Beyond that, I am so thankful that she is in a school where so many of the staff have really gotten to know and embrace KayTar's silly, joyful, happy-go-lucky personality. It can be tough and worrisome to send a kid with complex medical issues off to school everyday, but the truth is that when I send KayTar to school I know that she is in wonderful hands. Her nurse is truly an angel and she doesn't only make sure KayTar's medical needs are taken care of, she makes sure she is happy and well-loved every day, too. I could not ask for more!

Here she is "helping" me take photos of BubTar.

Sunday, November 27, 2011

Thanksgiving break!

We've had a really great week...too bad we're back to the real world tomorrow!

Saturday we went out for lunch at Cici's Pizza and then went by the animal shelter...just to look! I've been asking for a puppy for Christmas ever since our new neighbor puppy found her way into our backyard and spent a couple of afternoons with us until her family got home. There were so many cute animals at the shelter, so we chose a few dogs we were interested in, but as we stood in line, most of the dogs we had chosen were claimed by other folks. There was one left, the one BubTar was really interested in, so we asked to see him. They told us he was "snappish" when he came in and maybe not a good idea with the kids, but another worker said he was VERY sweet and had warmed to him quickly. So we went ahead and asked to visit with him. He was SO pitiful! He just cowered in the middle of the sniffing, no licking, no wagging. Nothing. He just laid still, probably hoping no one would hit him. :( He definitely wasn't aggressive towards us, though. Not a growl or snarl or anything. He was too scared to move, I think. He wasn't available to be adopted yet, since he had only been in the shelter for a day, but we filled out a non-binding application so we would be first in line if we decided to get him. Since we already have a dog, they told us we needed to bring her up so they could meet before we could adopt him, so we made plans to do that on Monday.

I can't remember much of Sunday, which probably means it was a pretty lazy day! I think it was a grocery shop/do laundry/finish my history review kind of day.

I had class on Monday, but I skipped. I had tests in both classes the previous Wednesday and I knew we wouldn't really be doing much that day, so I stayed home with the family. We cleaned up the house; KayTar went to make cookies with my mom; Josh, BubTar, Penny, and I went to meet with Number Twelve at the shelter. The meeting went well enough. No aggression, just mutual avoidance. Fair enough. We housed a dog for a while this summer (a lost dog roaming our street, until we found the owner) and Penny was VERY aggressive, so avoidance was an improvement. They hadn't processed our application yet, so they said they would call when they had. That night we went to a birthday dinner for my father-in-law. The shelter called and left a message saying we were approved! I was still a little unsure...he hadn't been really warm towards us, because he was still so scared and submissive. I also still really wanted a puppy, and he was about a year and a half old. But things were moving along and everyone approved of him, even KayTar, who hates dogs and their jumpy, waggy, licky behavior. So I just let things unfold.

Tuesday morning, on my way to class, I went by the shelter to pay the adoption fees and they told me he had already been sent out to be neutered and we could pick him up that night. After my exam/class, we went out to Chuck E. Cheese to meet up with KayTar's little Kindergarten boyfriend from last year for an hour or so. Then KayTar spent the night with my parents that night and the rest of us went to pick up the doggy. He was so pitiful! He was all sad and drugged from surgery, awww! That is when I kind of started to fall in love with him. What a cutie! He was still a little aloof, so we just let him get used to the house and us and he started to warm up to me pretty quickly once we got him here. I went out and bought his kennel and he slept in it, no problems! He was housebroken, too, no accidents!

On Wednesday, we had one of BubTar's friends from school and her family over, they were picking up a big castle they were buying from us, and the kids ran around and played for an hour or two. As they were leaving, Josh opened the front door and the dog took off! I took off after him at full tilt (oh my gosh, you guys, I do NOT run, but I was booking it. I nearly died. LOL.) and evidently Josh and BubTar ran off after me, leaving KayTar in the yard with our guests. I chased him down the block and around the corner and then he just stopped and looked at me. Like, "Oh, I have home now." so I scooped him up and we went home. Now we are SUPER careful about opening the front door. Penny will NEVER run away, in fact if the back gate is open, she comes to the front door and scratches to let us having a runner is a new thing for us. That night the kids and I played Clue and he napped in the Clue box. It was adorable. He also started coughing a lot...kennel cough. Oh, and we decided to call him Dobby (from Harry Potter). So far, it has stuck. He is such a little sweetie! He is exactly what I wanted; a small, sweet dog who loves to cuddle. Everyone in the family approves, though Penny is a little cranky about the change and Peanut (the cat) and Dobby are still figuring each other out.

Thursday was Thanksgiving, so we had lunch with my parents and dinner with Josh's parents. KayTar ate TURKEY at lunch! First year EVER! It was awesome. That night, Josh's littlest sister spent the night with BubTar.

My parents picked me up at 4:30 the next morning for our traditional Black Friday shopping. We went to Academy, Big Lots, Target, Kohls, Best Buy, and Barnes and Noble. I wasn't going for anything specific, but I did pretty well and got quite a bit crossed off my list. Between that and online shopping later in the day, I finished BubTar and got pretty close to being finished with KayTar, too! I took the best nap I've had in YEARS later in the day. It was glorious. KayTar started to get sick on Friday, too, probably thanks for Chuck E. Cheese...there is not enough Purell in the world to keep her well in that microbe convention.

Yesterday, we mostly hung out at home, letting KayTar get the rest she needs. She and Dobby are both on the same cough medicine (Triaminic), so I keep joking that she's got kennel cough, too. In the evening our friends came over to hang out and we played Mexican Train and had mudslides.

Today Josh is working on a literature review, I'm doing laundry to prepare for real life tomorrow, KayTar is resting, and BubTar is watching a lot of Doctor Who. Later in the day we are going to put up the tree and Josh is going to make Pioneer Woman's meatloaf tonight. Then it will be back to reality, bright and early tomorrow morning. AGH!!

Wednesday, November 23, 2011

Sunday, November 20, 2011

Sleep Study Results

We saw the pulmonologist on Tuesday to get KayTar's sleep study results.

She was asleep for 86.9% of the study. (norm is greater than 90%)
She had 189 arousals or 20.9 per hour. (norm is less than 14 per hour)
Her O2 saturation was usually 97% with desats to 91%.
Her EtCO2 was as high as 52 mmHg, but usually 45-49 mmHg (norm is below 45)
She had 15 central apneas lasting between 8-16 seconds.
She had 3 obstructive hyponeas.
She had a slightly slow occipital rhythm on EEG.

So, she had some abnormalities...but nothing too dramatic, and nothing to current pulmonologist wants to treat. It is a little frustrating...on one hand, we are glad she had no major abnormalities...but on the other hand, we are tired of living in the gray area! It is also frustrating because I've talked with a few parents whose kiddos see the pulmonologist who specializes in these metabolic/mito kids (the one we were supposed to see) and she treats at lower thresholds, because these kids tend to be more affected by these subtle changes, so kids with more normal results than KayTar are being treated. I'm especially concerned about her EtCo2 being mildly, but consistently elevated all night. That, plus the fact that she holds her breath so much of the day, makes me worry a bit about hypercapnia. Seems like there is a chance that headaches and fatigue could be stemming from that and I'd like to rule it out for sure before we ignore it as a possibility. The truth is that if nobody truly knows what is going on inside KayTar's body, they really don't know if these slight changes are causing problems for her. Alas, getting a doctor to return a phone call or email these days evidently requires an act of I'm not going to hold my breath that anyone will actually follow-up on this. Pun intended. ;)


In other news, KayTar has had a couple of good weeks, school-wise. She hasn't really needed to make any extra trips to the nurse during the day (with the exception of an odd earache complaint), so that is good. But she is still having issues at home...headaches a couple of nights this week and more abdominal pain tonight. I've been playing phone tag with the GI office since Friday before last...10 days now. I've spoken with a couple of nurses in the meantime, the one I mentioned in the previous post, and a different one who seemed at least familiar with KayTar's case and was reading comments that I could tell actually came from her GI. She basically asked what I felt was appropriate and I said that I just want to make sure we aren't overlooking a physical problem before writing this off as her new baseline. We decided to order a KUB and get a referral to a motility specialist. The last thing she said was, "Let me call [clinic location] to get that KUB scheduled. I'll call you right back." That as WEDNESDAY. Sooo, we're getting nowhere quick. I'm really hoping someone gets back to me this week, though, so we might have a shot of figuring this out for her.

Sunday, November 13, 2011

Almost, but not quite.

 KayTar had a really great week this week. She is back on 8 ounce bolus feeds four times a day and she went all week without extra visits to the nurse for abdominal pain or headaches! Thursday night, I was contemplating writing an email to the pediatrician to tell her how well things had been going...then 20 minutes after I had this thought, KayTar called out that her tummy was hurting. Blurg! I cannot adequately explain how much I want to get her back to baseline. We are getting close, several months and two new meds later, and I'm glad we are getting close...but we just can't get her all the way there.

I called her GI on Friday and spoke to the nurse. Before we just accept that this recurring pain is just part of her new normal, I want to be sure we aren't missing anything we can fix. When she saw the doctor last, there was no pain, just decreased feed tolerance and increased I wanted to make sure she had all the information. The nurse spoke to the doctor and called back, but I was out and she spoke to Josh instead. She said to take KayTar off her motility medication for the weekend and start her on probiotics and call to update on Monday. The problem is that KayTar's pain preceded starting the motility meds, and it actually the big reason we went ahead and started the medication, so I already know that isn't the cause of the pain. I'm not going to risk ruining the fact that she is finally on normal feeds again without them having all the information, so I called back, but no one returned my call before end of day Friday. So, I started her on probiotics, but didn't take her off the motility meds...not until I talked to them to clarify the order of events a bit better.

We have had a good weekend. Josh's birthday was Friday and he had the day off, so we spent it together. We spent half of it at the kids' school, eating lunch with the kids and helping out with Jump Rope for Heart, then had dinner with Josh's family in the evening. Yesterday, we went to Turkey Trot at the kids' school, my niece's birthday party, and then Josh and I went out to eat with our best friends for dinner. It was a fun night! We picked up the kids after and shortly after we got home, KayTar grabbed her eye and said she had a headache...and a tummy ache. I gave her Motrin and heated up her rice bag for her tummy. She fell asleep pretty easily spite of it. She said it had been hurting for a while, but she wanted to wait until she got home to tell someone. I reminded her that she needs to speak up as soon as she starts feeling bad, so we can help her feel better sooner.

I hate that she is still having pain for no discernible reason. I hate to think that we may really have lost her baseline for good...which makes the possibility that she has something progressive carry a bit more weight. In truth, I've spent a bit more time thinking about that lately than I'd like. I still have no idea what I'm going to do next semester yet, though registration for classes is open now. But, I'm glad her feeds are back to normal. I'm glad she had a great week at school and only had pain twice. I'm incredibly glad she is still happy, bubbly, bouncy KayTar and she takes these little bumps on stride. That is truly a gift.

Monday morning update: She didn't tolerate her 8 ounce feed this morning. She called down and asked me to turn it off because she was feeling pukey. She only got a little over half of it before feeling yucky. We're trying 8 ounces again for her midday feed at school, so we'll see how it goes. I really need to knock on wood when posting good news of any sort...when will I learn?!

Wednesday, November 09, 2011

Honor Roll Kids!

The first grading period for the kids ended a couple of weeks ago and both of my little smarties made Honor Roll! BubTar has always been on Honor Roll, so that was not a surprise, but since KayTar has never made real numerical grades before this year, it was her first time!

BubTar was especially excited to see her first report card and had it out of her folder and was reading it aloud before we even left the school parking lot. He announced, "KayTar made the Honor Roll!" and I said, "Well, what about Math?" because of all of her subjects, she has the hardest time with that one because unlike reading and other verbal skills, she doesn't just KNOW the answer is tough to transition from automatically knowing-it-all to having to do actual figuring in your brain! But BubTar said, "She made a 90 in Math...almost a B!" He said it with just a hint of condescension in his voice, too. So it was QUITE funny to pull out his report card at home and discover they had identical grades in Math, 90, an almost B as BubTar called it. In fact, they had identical grades across the board (in the subject KayTar gets grades in), except for Spelling, where she beat him by 2 points. They were both pretty entertained by their matching grades! Which, for the record, were as follows:

Language Arts: 98
Reading: 99
Writing: 96
Math: 90
Social Studies: 98 for B/S for K
Science: 96 for B/S for K
Spelling: 97 for B/99 for K
Conduct: A

KayTar's report card said, "KayTar is such a smart and talented girl. She is a joy to have in class. Keep up the good work, KayTar!"

BubTar's said, "BubTar is a pleasure to have in my class this year. Honor Roll!"

KayTar missed 6 out of 36 days this 9 weeks, and BubTar missed 0.

And the best part was the KayTar FINALLY got a certificate during Pod Awards. Every 9 weeks for the past two years, she has cried on Awards Day, because prior to numerical grades the only certificate the kids could earn was Perfect Attendance...and that is an unattainable goal for our sweet girl. When she got her award, she said, “Oh my gosh!  I’ve never received a certificate before!” 


Speaking of school, KayTar had a homework assignment in which she had draw and label different kinds of nouns, ie. person, place, thing. This is the picture she drew for her things (glasses, blankey, vanity, and pump):

My favorite part is her, pushing her little IV/pump pole.

Monday, November 07, 2011

Thoughtful Sock Monkey.

I am in love with this photo.

Friday, November 04, 2011

Third Tube-iversary!

Today is KayTar's 3rd tube-iversary! She has now had a g-button for just as long as she ever lived without one. It is hard really remember what life was like pre-tube, but I do remember it was A LOT more stressful for all of us.

In the hospital, after placement...

Last night when I was tucking her in, I told her, "Tomorrow you'll have had a g-button for THREE YEARS! Half of your life!" And she looked very concerned and said, "Oh? Will that thing happen to it?" I said, "What thing?" She said, "Like with the milk, when you have to throw it away?" Then I realized what she meant, "You mean, is it going to expire?" She nodded seriously and I assured her that wasn't the case, "YAY!" she said in reply. She loves her tube, it has made her life so much easier, healthier, and more pleasant. We were SO worried about it before we she had it placed, but it has TRULY been the best decision we have ever made for her. This morning she walked out to the car singing her little tubey "Happy Birthday!" :)

Here is a video from right after she had it placed, explaining it...such an adorable, wee little thing she was!

Thursday, November 03, 2011

Sleep Study!

KayTar's sleep study was last night and it went better and worse than I expected. It went better in that she didn't have any major allergic reactions to the adhesives, so the no-Coban/limited adhesives plan worked. It was worse in that there wasn't much sleep happening during that sleep study. She slept enough for them to get the data they needed, but it was not a restful night and she moaned a lot and woke up confused a few times. She usually sleeps right through the night, even when we've been inpatient, but it is tough to get rest when you are hooked up like this! EEG, EKG, nasal cannulas, bands around the chest to measure expansions/contractions, sensors on her legs and chin, pulse oximeter...yowza!

That being said, I'm certain she got more sleep than I did. I was not feeling my best in the first place, but when you add in the freezing room, hard mattress and pillow, sleeping fully clothed with a hoodie on, and a kiddo who isn't sleeping...well, it was not a recipe for successful snoozing. We got through it, though, and it was definitely not the worst test we've ever been through!

The techs would not tell me anything, so we have to wait 3-4 days for the report from the doctor. I'll call on Monday to check on things, because I'm very curious about how it looked on their end. I know from watching the one monitor in the room that her ETCO2 stayed in the 45-49 range for the most part and I saw her RR drop below 10 a few times. Of course, I didn't watch the monitor all night...I did attempt to catch some Zzz's, though they proved to be quite elusive. KayTar and I spent the day here recuperating and I am SO looking forward to a good night's sleep in my own amazingly comfy bed tonight.

Wednesday, November 02, 2011