Christmas 2012!

In spite of KayTar being so sick, we DID have a great Christmas. Sure, we missed out on things like going to a candlelight service on Christmas Eve and having dinner with my in-laws (at least, KayTar and I did, the boys were able to go)...but KayTar stayed out of the hospital and at home, so that was enough for me! We had a VERY low key Christmas Eve, basically resting while KayTar was on the feeding pump 24/7 (mostly clears and a small amount of formula periodically). Twinkle left the kids' Christmas PJs out for them in the morning along with a new Christmas movie...ELF! Of course! Usually the elves drop the PJs and the movie off on the doorstep, but Twinkle said (in an email) that since he was already "stationed here", he got to be in charge of it this year. 

My parents came over in the evening, while the boys were at dinner, for their normal Christmas Eve tradition of sleeping over. Once the boys got home and the kiddos put on their PJs, we let them exchange gifts with each other. BubTar got KayTar the Marcel the Shell book. She was SO excited. She is crazy about Marcel the Shell and can even talk like him. It was a perfect gift! KayTar got BubTar a Domo dressed up in a sock monkey costume, which BubTar was thrilled with, too. She REALLY wanted to get him that toaster that toasts an image of Domo on your bread, but it was over her budget. They were both very happy!

That night, while we slept, Twinkle made it SNOW while Santa filled stockings and put out presents. Santa brought KayTar the Sorting Hat and Elder Wand and he brought BubTar the PotatOS and long-fall socks from Portal 2. They were both exceptionally happy for kids that did not get what they asked for from Santa. (KayTar had been asking for a real motorcycle she could ride and suddenly changed her mind to a DSi on Christmas Eve, and BubTar had been asking for a real teacup pig and a PS3. Oy.)

Usually presents at our house are a free-for-all. We don't take turns opening or watch everyone (partially because I HATE being watched when I open gifts...my reactions are lackluster even when I am thrilled!), but this year we had given both kids something extra special that we wanted them to open one at a time, first. KayTar went first and was ecstatic about her American Girl doll! She hugged it so quick she was a blur!

Then it was BubTar's turn to open...his XBOX 360! A little backstory, we used to have an XBOX 360, but it broke three times on us and Josh swore we would never get another because of the issues they are prone to. BubTar has been asking for one for years and Josh always says, "I am not buying one of those pieces of crap again..." So this year BubTar gave up and started asking for a PS3 and we bought one. In the photo below, he was saying, "Oh, so you bought me one of those things you call a 'piece of crap'?!" He was THRILLED though and has been playing it regularly.

I love this one.

Matching hats and wheelchairs! :)

Those were the big highlights for the kids, even though there were many other wonderful gifts to be opened for all of us! Once the big stuff was over, I kind of abandoned my camera, but here are some Instagrams I did manage to snap.

My mom and the canvas I got her of her and the grandkids.

My dad and the canvas of him and KayTar fishing together.

Josh and his personalized pint glasses.

Alcohol was kind of a theme this year, don't know what that says. ;)

My awesome new shirt!

How BubTar has looked for days.

KayTar and the doll curriculum she bought with her BN gift card.

Sorting Hat, Elder Wand, Time Turner, and Gryffindor scarf!

Soooo cute! :)

KayTar said, "It is the best day of my life!" and "Only 365 more days until next Christmas!" I hope that each of you had an equally blessed Christmas with those you love!  :)

Merry Christmas from The 'Tars!

We had a great Christmas and KayTar was able to stay at home. It was iffy for a bit, but we were able to manage her at home, thankfully!

Gastroparesis, ketosis, and an abscess...oh my!

It has been a rough few days! We are currently fighting against a return trip (we were already in the ER on Saturday) to the hospital because KayTar still isn't doing well.

It all started Thursday afternoon when KayTar made me stop her feed and she promptly vomited it ALL up while I was rushing to get her venting equipment. We did clears that evening and slow formula on Friday morning. We managed to get her to school for part of the day and part of her party before going to get her already scheduled flu shot (maybe we should have skipped this!). Friday she got about 16 ounces of Elecare plus 8 ounces of Powerade over night for a total of 24 ounces, rather than her normal 32 ounces in a day. Normally a deficit like that isn't a big deal, but when we checked her urine on Saturday, she was already spilling a large amount of ketones. Not good! It has been years since she has decompensated like that and I was quite worried we would end up in the hospital on Christmas if we didn't get her buffed up, so I called the on call neuro and he agreed we should bring her in to get fluids.

This was our first time in the ER with our protocol letter and we were taken back quickly! The rest of it was sloooow once we were back and hooked up, though. KayTar was not thrilled with any of it, except for the Angry Birds toy she got for a reward for the IV and the teddy bear we got at registration. I was a teeny bit frustrated that they forgot to order half of her urgent labs until hours after she had been on D10 and fluids, so they were all normal by then...who knows how they were when we got there! We were discharged around midnight and headed home. It was a long afternoon/night. (And I was forced to watch Santa Paws. Good Lord.)

Sunday morning, I noticed that KayTar was wincing when I gave her meds and plugged in her feed, which is totally weird. I consulted the collective wisdom of my tubie parent friends and Heather suggested that it may be an abscess and to feel around for a lump or ridge. Bingo! There it was...right where it hurt worst. I took a photo at the pediatrician's request and she decided to treat her with oral and topical antibiotics. We started them midday yesterday. I don't know if the brewing abscess caused the earlier vomiting, feed intolerance, and decompensation, but we are hoping that treating it will help. Unfortunately, last night she was spilling ketones again!! And when I tried to vent her, I pulled out a lot of old formula. It is like nothing is moving through. We can run feeds for a time and it is fine until it hits maximum capacity and then we can't get anything more in. Ugh! We hooked her up to her pump last night to try and get 16 ounces of Powerade in over 12 hours, but she unplugged herself in the night (and now there is red Powerade everywhere!!) and I don't know how much she really got. Grrr.

This morning her glucose was low-ish (62) and she was spilling ketones still. We are trying to alternate 4 ounces of Powerade (dye-free!! I learned my lesson!) and 2 ounces of formula at a rate of 60ml/hr (2 ounces an hour for those of you that don't speak this language). At last check, she was still spilling ketones, but her glucose was at 80. She has diarrhea now, though. She is also getting congested. I am at a loss as to what exactly is going on and we are struggling to avoid a bounce-back to the ER. I don't think they will let her go unless she starts tolerating normal feeds if we have to go back. This is the first time we've dealt with both a gastroparesis flare AND metabolic problems and they are both working hard against us. So if you are the praying type, please pray that we can get this under control and avoid another hospital trip. KayTar would be heartbroken to miss Christmas at home!

If I should die...

A couple weeks back, I was driving across town to purchase a special Christmas present for KayTar. Between school being downtown and KayTar's docs being in the medical center, I'm on the freeways nearly every day of the week, usually without incident. But on this day, that wasn't the case. I was in the process of changing lanes when the car in front of me (in the lane I was leaving) slammed on his brakes, so I had to hit mine so I didn't clip him on my way out. I'm sure I've done this loads of times without any issue, but for some reason THIS time, my car started fishtailing across THREE lanes of traffic on I-45. I was definitely not in control of the car and did not know how to fix it. I remember thinking, "When you are hydroplaning or skidding, you are supposed to turn into it..." but I couldn't remember what to do about fishtailing! But then the car was okay again and somehow, I never got hit. It could have definitely ended badly with the way my car was careening around. My first thought after I had control of the car again was, "OMG, there are so many things about KayTar's care that exist ONLY in my brain!" If something had happened to me, poor Josh would have been lost. He is very involved in her daily care, don't get me wrong...but I do all of the remembering. I know her schedule and when she needs feeds and meds and when her doctor appointments are and who her doctors are and who writes what prescriptions and what home health companies handle what and where all her records are...and and and!

As soon as I got home, I got to work on compiling some pertinent information for Josh. A lot of it was already fairly accessible, as I keep and online copy of the start of her medical binder on Google Drive and a physical copy by my bed, but it wouldn't have helped him any since I've never mentioned it to him or shown him where I keep it. The medical binder already had the following info (and the physical copy also has her latest notes from clinic, sleep studies, audiograms, ect):

-List of physicians/therapist/insurance case worker and all contact info
-Copy of her insurance card and SS number
-List of all meds, what she takes them for, when she takes them, and if they are PRN or daily, as well as her formula and oxygen information
-Equipment and supplies list (and I added what HHC handles what equipment and when to contact them, as well as how to find her glasses script info online)
- An updated Visual Guide to KayTar

In addition to this, I wrote up a walk-through of an "ideal" day in KayTar's life, a non-sick, run-of-the-mill sort of school day:

5:00am Nexium
6:15am Give 7 ml Augmentin and start feed ((dose) 240 ml @ (rate) 480ml/hr) of 8 ounces of Elecare 3 tsp Miralax, and 1 tbsp cornstarch
6:45am Feed over. Get dressed. Turn off O2. Brush hair and teeth. Pull hair into ponytail. Give 2 puffs of Advair. Socks/shoes on. Prep school feed (8 ounces Elecare, 1 tsp of cornstarch and water). Make sure glucometer bag is packed and is in the front pocket of feeding backpack. Pack lunch. Write note for her jacket pocket.
7:20am Leave for school. Bring backpack, lunchbox, jacket, pulse ox, and feeding backpack. If it is Monday, bring O2 tank and supplies (check with Mrs. H about the Augmentin that stays in the clinic to see if/when she needs more.). Drop pulse ox, feeding backpack, and oxygen in clinic.
11:00am She gets her glucose check and tube feeding at school.
3:05pm Dismissal. Pick up pulse ox from clinic either before or after dismissal time. On Friday, bring home O2 tank and supplies.3:30pm Give 7ml of Augmentin and start another tube feed. Do homework. She does her handwriting work on the paper that I have stored on my computer. [My Documents->My Pictures->September 2011->Hi-Write Paper] Most things she can do on her own, but she often needs help remembering the steps for ABC order. We do it this way (if you don’t understand from reading it, just read it to her and she’ll show you what it means): Write the alphabet on the paper. Go down the list and circle the letters of the alphabet that the words start with. If there are multiple words with the same first letter, then she writes 2, 3, 4, ect. near the circled letter. Then she goes down the alphabet and stops at every circled letter, finds that word, gives it the proper number. After all the words are numbered, then she puts them in order on her blank paper.
6pm Shower or Bath. Pajama time. Braid hair. Teeth brushing. 2 puffs of Advair.
7pm Give 10ml of Benadryl and dose of Nexium. Reading time.
7:30pm Bedtime and cuddles. Start oxygen at ¾ liter.
8:30pm Mix Elecare; 27.5 ounces of water + 22 scoops of Elecare. Lay out clothes for next day (both kids).
9pm 7ml of Augmentin and tube feed.

This is an ideal day...we both know it doesn’t always go like this, though! :) On the weekend, it all gets shifted around. Feeds are typically 4 hours apart, so set an alarm until it becomes second nature. Be sure to check her oxygen saturations periodically, if she is BELOW 96, start her on ¾ liter of oxygen and increase until sats are appropriate.

I also wrote a "troubleshooting" guide for if she is sick, kind of the thought-processes I go through when deciding how to treat her when sick. It won't cover everything, but these are the most frequent things we encounter:

Ketones/Hypoglycemia:
*When KayTar is sick, periodically check her urine for ketones. If positive, check every urine until they resolve and occasionally thereafter.*Check glucose in the morning when sick and when she is symptomatic during the day (lethargic, nauseated, dizzy/wobbly, “legs don’t work”). If lower than 70, give 2 ounces Gatorade. Recheck in 15 minutes. Give 2 more ounces of Gatorade. Continue until glucose is appropriate. If below 50, go to ER at Children’s Memorial Hermann and give them her protocol letter.
Coughing/Congestion:
*First line of treatment is Benadryl (10 ml every 4 hours) and Albuterol (2-4 puffs if coughing is not bad, a nebulizer treatment if it is bad, every 4 hours.*If the cough is not responding well to that, you can give her 10ml of Triaminic Long Acting Cough (dye-free). The other OTC cough meds make her manic, beware! If you ever have to use a different brand, do not give it after 2pm!*If coughing does not resolve after a viral illness or if she gets better (no more fever) and then spikes a new fever 1-3 days later, take her to see Dr. H...she either needs oral steroids or has pneumonia. This is her pattern.*When sick she needs increased oxygen support, make sure to increase her oxygen dose so her sats are in range and keep her on 24 hours until she is doing better.
Gut Stuff:
*Give 5ml of Ondansetron every 6-8 hours for vomiting.*If she feels too full after a feed, draw some out with venting/decompession tube.*If she is not tolerating formula feeds due to illness, slow the rate down (try 120ml/hr). If she still is not tolerating it, try slow drip Gatorade instead (a rate of 60ml/hr and a dose of 240ml will run in 8 ounces of Gatorade in 4 hours. Try to get 2 of these in during the day. Then run the pump overnight at 30ml/hr with a dose of 240 ml and she will get 8 ounces over 8 hours to keep her glucose up. Try formula at this rate the next day. When running formula over long periods of time, hang an ice pack with it. Continue to work the rates up from there until she is back to (or close to) normal, which is rate of 480ml/hr with a dose of 240ml.
Fever:
*I do not usually give meds for fever unless it is at/above 102 or she is bothered by it.*First line of treatment is 10 ml Motrin every 6 hours. *If Motrin does not break the fever or if it spikes back up prior to the 6 hour mark, you can give 10 ml of acetaminophen every 4 hours. Write down what time you give which med, it gets confusing in the middle of the night. If you know she needs both meds to keep the fever down, try to get into a schedule of alternating them every 3 hours.
*If she is feverish and ketotic/hypoglycemic and not tolerating feeds...or if she stops urinating or isn’t cognitively herself...take her to the ER at Children’s Memorial so they can manage her.

I put all of it on Google Drive and shared it with Josh. I also showed him how to braid KayTar's hair...you know, the important stuff. ;) It isn't everything and I don't think I can EVER cover all of the bases, but I feel like I got enough of the important stuff down in writing to make it considerably easier for everyone if something were to happen to me. I probably should have done it ages ago, in all honestly, but thinking about and preparing for your own death just feels sort of grim. Realizing how quickly and unexpectedly something terrible could happen was the little push I needed to finally take care of this!

GI and Eyes!

I'm so terrible at this blogging thing these days. I remember when I used to write almost daily, just because...now even when I have something to say, it takes me forever to find the time to sit down and do it! Of course, I used to have a lot of readers so I felt more of an outside compulsion to keep up. Now it is mostly for me and it turns out that ME is a little lazy at times! ;) Time to play catch-up once again!

On October 18th, KayTar had her GI check-up. She was 49 inches tall and 50 pounds...if I remember correctly. I do know that she is getting taller SO quickly these days. The doctor was very pleased with her growth and the continued success of the Augmentin for her motility and said we can just keep things as-is until her next check-up...then we might consider upping her daily calories. The Augmentin is working really well on a daily basis and has perhaps made the biggest difference in her stooling habits (keeps things loose and we have soooo many fewer accidents now)...but it is not enough when she gets sick or is recovering. It took us nearly an entire month to work back to normal feed rates after her crash at Mito Camp. But yay! She's back to normal feeds now! She's also fighting with a new bug, so we'll see how long it lasts. I think we may eventually need to move on to something else to help her motility, but I'm at least satisfied with the way it has helped her intestinal motility, even if her tummy still gets very sluggish when sick.

She had her ophthalmology check-up on October 30th. I was SO impressed by her in that appointment. For all of these years, when he would ask if she was having any trouble, I had to give my best guess based on my observations, but this time when he asked, she replied, "Well, the numbers on the calendar at school just look like blurry dots from my desk." It was such a little moment, but she seemed so grown up in it! Then they told her they had to dilate her eyes and she lost her mind and had to be restrained while she screamed...so that tempered it a little. ;) She actually said, "Don't do this to me, it is worse than the Cruciatus Curse!" Oh, drama and wizardry! The doctor said he myopia is rapidly progressing and her prescription went from a -3.25 R and -2.50 L to a -4.25 R and -3.75 L...no wonder she couldn't see the numbers! He also recommended bifocals. We got her new glasses in next week and I think they are gigantic and resemble space goggles even though I ordered the smallest bifocal frames, but she loves them and is so excited to be able to SEE clearly!

We flew to the North Pole!

This past Saturday, KayTar and I were invited to do something REALLY cool! We got to participate in United Airlines Fantasy Flight to the North Pole! The Fantasy Flight is mostly for muscular dystrophy kids, but since mito falls under that larger umbrella, our mito clinic had a handful of slots for their patients and we were chosen to go. The boys were busy with scout stuff that day and the invitation was for one patient and two accompanying adults, so I invited our friend/KayTar's school nurse to join us. It was wonderful!

I didn't tell KayTar in advance for two reasons; first, I didn't want her to get sick and us have to cancel and make her the saddest kid on the planet, and second, I didn't think she could make it through the rest of the week of school and concentrate AT ALL if she knew we were going to the North Pole! Friday night, I told her that we were doing something the next day with Mrs. H, but I wouldn't tell her what. She tried guessing and started with things like the movies or the museum, but I told her she wasn't guessing big enough...so she guessed London, the Eiffel Tower, and THE NORTH POLE! I was sure the jig was up at that point, because I didn't deny it, I just said, "I can't tell you!" and she moved on.

On the drive in, she made more guesses and asked us to tell her, but we didn't. Though BOTH of us made oopsies when talking to each other...she said something about "airpo--" before catching herself and I said something about "fly--" before stopping myself. KayTar just kept up her guessing the backseat, none the wiser. As we got closer, we told her to look for clues as there were big airplanes flying overhead and signs about the airport, but she didn't notice any of that. She started guessing, "The Parking Spot??" "$3.99 breakfast?" "Ramada Inn?" "Park N' Fly?" When she got to that one, I said, "No, but there is a clue on that sign!" She still didn't get it. Even when we passed the big airport sign, it didn't quite click. She said, "What are we going to do at the airport?" Hmm, what do people usually do at the airport, kiddo?! It was all very innocent and entertaining.

When we parked, we ran into our friends the P's, and her boys had been before and were just dying to tell KayTar where we were headed and so I gave them permission. She was STOKED! When we got inside, they routed us over to get our tickets (which said North Pole as the destination) and KayTar got a t-shirt and Santa hat. Our tickets were not all together, unfortunately, so I asked if they could fix it and they did it right away so the three of us could sit together on the flight. After getting our tickets and going through security (easiest security check in a looong time!), we rode on a tram (while KayTar princess waved to people from the front seat) over to a waiting area where they had snacks and drinks for everyone. The kids played while we waited and some of the airport security dogs came to visit. There was face painting, too, and KayTar got a hot pink mustache. Soon enough it was time to go, so we headed to our gate...which really said North Pole!

I love this picture of the boys whispering North Pole secrets to K!

As we boarded, they gave the kids a little bag with snacks in it and once we were on they were each able to meet the pilot and take a turn in the cockpit! The flight attendants were all dressed up and sang carols and were so friendly with the kiddos. On the way to the cockpit, KayTar sweet-talked a male flight attendant out of his blinky light necklace with her go-to phrase, "I wish I could have one of those..." It is unbelievable how often that works for her! When it was time to take off, KayTar clapped and woohoo-ed and flapped her arms like a bird. She LOVED it! (We basically flew in a circle around the city for an hour before landing back at the airport/North Pole.)

With our awesome Mito Camp director!

Admiring the necklace she just acquired...

When we landed and deplaned, all of the volunteers were lined up at the gate and they cheered for all of us. KayTar ate it up, of course. She would be thrilled if someone just followed her around and clapped for her all day long! She was smart enough to know where we were, but it didn't matter...it was still super exciting. She got a snowcone, plain, about which one of her friends said indignantly, "You got ICE flavored ICE?" Then she decorated a cookie before we went to see Santa. The picture they took was very cute and they printed it and put it in an adorable frame for us to take home. She also got to pick out a couple of toys, a little castle and a Barbie. After Santa, she made an ornament, we had some NFL players sign a football for her, then we got pizza and another plain snowcone. She had a lot of fun all day hanging out with her buddies the P's! On our way out, they gave KayTar a 16 GB iPod Nano! She was amazed! They gave her a yellow one, which she was totally cool with, but we ran into the P's again on the way out and one of her boys had gotten a pink...so a trade was arranged and everyone was even happier, if that is possible!

It was a really, really fantastic day...one that I know we will always remember. There was so much thought and effort and money poured into making this a really marvelous day for these kiddos. Thanks, United Airlines and all of the awesome volunteers that helped make it such a memorable day. KayTar can't wait to go back next year (hopefully)!