Kaylee Stuart: I love my sissy

9/25/10

OMG! My last post was 5/18/10, WOW – time flies when you’re having fun I guess! So after figuring out how to log into my blogspot account again, I’m ready to give you all an update and some new photographs! I just rolled back into Hays last evening after a 3 month check up and I’m happy to report that all is well – I still need to concentrate on packing on the lbs, but I’m too busy crawling all over the place and pulling myself up! I eat just about anything I can get my grubby little meathooks on – everything from sweet potatoes, to prunes, bananas, cereal, you name it and boy is Bosco my best friend! I’m especially interested in whatever mommy and daddy are eating and they’re really good about sharing! Guess who else is good about sharing? My best bud bosco – we watch each others’ backs when it comes to food! I feed him regularly from my high chair and he returns the favor! Since becoming mobile on Labor Day, I’m into everything under the sun and I enjoy a little Nutro dog food from time to time – my skin is super shiny and I have very little tartar buildup on my two bottom pearly whites! However, my diapers have been nice and stinky with no blood – so we are getting to add gluten back into our diet and more to come if all remains well! I don’t have another checkup until the middle of January 2011, so I’ll blog with you next year! JK, I’ll do better! Later Alligators, Love, Bean!

5/18/10

Home at last! Wow, whatta day though! My day began bright and early bout half past 5 this morning! Breakfast was the only thing good about that time! I had the pleasure of being stuck 3 different places by 2 different nurses all to find out that they failed – and miserably I might add! The folks and I are taking a stand : you want my blood, you find a phlebotomist – otherwise, NO DICE! After that it was off to have my chest x-ray, which turned out beautifully! No concerns with fluid on my lungs, enlargement of my heart, etc. After the field trip to the radiology department, it was time for my echocardiogram. That also turned out great, and I didn’t even yell at the poor lady – for too long! I was pretty hungry by this time, so we snuck in another breakfast before I had the staples in my chest removed! Everyone should get the privilege of having that done atleast once in their life! Then the docs rounded late in the morning and reported that all the tests looked good, except for the blood, but I think they got the hint and didn’t push the issue on re-re-re-testing! All that was left was waiting for the discharge paperwork and my drugs for the ditch (or road)! We took off about 2 pm and I slept till about Salina, and then for the most part enjoyed the remainder of the trip home. Bosco bolted out the door to greet us at 5:30 and all has been well since! I’m pretty stoked about not getting assessed, poked, or harassed tonight! Thanks for all your love, thoughts, prayers, and support you’ve given me and my family over the past 6 months – we are truly blessed to have you all in our corner! I’ll update periodically, but probably not every night – I gotta enjoy these nice evenings to the fullest! Love, Kaylee

5/17/10

Hey blog readers! How was your Monday? Mine was uneventful so far, but I guess there’s still a couple of hours left! Last night after I blogged, I squeezed in another scream session before midnight! Yup, that IV they strapped to my squash with two rolls of tape – it went south! They did manage to get my meds in it after unkinking it, but it wasn’t worth trying to retape! God knows I lost enough hair and tears with that one alone! The team decided that I was doing well enough that I could have my meds by mouth from then on, and I’m happy to report that all is still well!

Today, I had to skip a couple of doses of oxycodone if I wanted to go home tomorrow, which I gladly agreed to! I wouldn’t have” needed the dosages I took these past couple of days if they hadn’t irritated me so much! I’ve got another bath scheduled for tonight, a nurse assessment, late night snack with mom, and bed! As for tomorrow, I’ve got a busy day tentatively scheduled! We have another chest x-ray at 6am, blood draw, and then an echocardiogram. If that isn’t enough, I’m scheduled to have my staples taken out, discharge papers signed, and say my goodbyes! If I get things my way, they’ll sneak me a little goodbye oxycodone for the voyage home! Oxycodone or not, I’m ready to go home cause I hear Bosco’s missin me and there’s ribeyes defrosting (no I don’t eat steak yet, but I suppose I’ll enjoy in a roundabout way)! XOXO, Kaylee

5/16/10

Happy Sunday! I hope you all had as good of a Sunday as I did! I got plenty of beauty sleep and even a sponge bath! I didn’t like having to tell my family goodbye, but I’m gonna be headed west soon! Originally they thought that I’d be here until Thursday just to have my staples removed, but they’ve reconsidered! As long as I keep progressing and my vitals / sat #’s hold, I’ll be back in Hays on Tuesday the 18^th! They tell us that the plan is to remove the staples on Tuesday and use some glue rather than steri strips for a little longer hold. If that all goes down, I’ll be playin with Bosco Tuesday night!

Overall, today was night and day different from yesterday! My family’s made the comment on numerous times today how I’m back to my old self again – don’t know if that’s good or bad, but I’m back! Anyways, gotta go, it’s family movie night! I can’t say thank you enough for all the thoughts and prayers – they truly do work miracles! Love, Kaylee!

5/15/10

OMG, this was a Saturday I’m happy to put in my past and thank God he made tomorrow the day of rest! I know I’m gonna take advantage of it and I’m sure my family will do likewise!

My day started and ended well, I guess you could say – I got to nurse from momma! My bloody diapers are being chalked up as a temporary post-surgical result, for now. I survived the blood sticks (in the scalp) with negative results on all tests! However, breakfast was interrupted while we waited for the results of the tests and the report to come back on the abdominal x-ray (don’t worry, it was just a scout film or KUB - all is well)! So after brunch with ma, we got the news we were moving up to 4^th floor – Hooray! I also had my zippa bandages on my chest removed while still in the PICU!

We finally made our way upstairs bout mid-afternoon and that’s when all Hades broke loose! Upon arrival, the nurses were skeptical as to whether the IV’s in my feet were working properly – I lit up like a Christmas tree every time they pushed anything through them! Kaylee loves needlesticks, so guess what, I got a new IV stuck in my squash – atleast maybe now I’ll get a little better transport of my meds! In the process of two nurses and dad holding me down, I managed to finagle my one remaining chest drainage tube out! Everybody freaked, but we’d overheard talk of it being yanked tomorrow or Monday so I just got the ball rolling myself! This brought in another couple of nurses and interns to help hold my wirey 12 lbs. down and remove the sutures that were “suppose” to be anchoring the tube to my flesh! Anyhow, another chest film later, and 95 different people listening to my lungs leads them to believe that I’ll be just fine – duh! And now for the grand finale! After I was all settled down and telling the family good night, it was time for my meds. That IV in my noggin, yeah well, it wouldn’t flush (nothing getting through)! This was probably partly due to the fact that they used bout 2 rolls of tape stickin that bad boy down and it got kinked! However, two nurses and both the folks managed to get all that tape off (along with some locks o’hair), unkink the kink, and securely re-fasten it to my melon. I was not in the mood for a new IV – good save gang!

I’m sure I’ve forgotten a whole bunch, but I’m tired, sore, and frankly my dear, I just don’t give a – until next time, this is the Bean! Over and out!

5/14/10

TGIF or more like TGFO (Thank God Friday’s Over)! Today I was a tad fussy with everything! I expressed my irritability and disapproval by tugging on nearly every cord, tube, and wire I could get my grubby little meat hooks on! I even managed to pull one of my chest drainage tubes out without consulting the docs first – they assured the folks and me that it would not be a problem, that’s one of the reasons they put two of them in to begin with! I did get several doses of morphine and oxycodone to help everyone cope with the situation.

I have yet to “hang out with mom” but I have fed from the bottle several times since late last evening – it’s better than nothing! I have been taken off all of my IV meds and my PICC line is out as well! I’m still on a bit of oxygen, but I’m pretty close to going room air anytime – my O2 sats have been holding well! I did have a couple of pretty bloody diapers this evening, which mom recalls me also having after my heart catheterization procedure. They are a little concerned because of these diapers, so I get the joy of having my blood drawn again tomorrow, which will ultimately lead to a good scream session! They say that if all goes well, I’ll be moving up to the fourth floor tomorrow - meaning we’re even closer to going home! Later alligator, Kaylee

5/13/10

Yippeeee – surgery #2 of 3 is done! All went well and now the recovery process begins! I first got to see mom and dad about 2:00pm after I was moved to the PICU, although I was still pretty groggy! I am in the process of trading this “grogginess” for “crankiness” as the anesthetic wears off! They tell me that hopefully I’ll be taken off of the ventilator later this afternoon / evening. If that all goes well, mom and I are going to hang out for a long overdo feeding – talk about hungry! Overall, they say that my numbers are very stable and I’m progressing as expected! I don’t know much else other than I already miss my crib at home and bosco – I am so ready to hit the road! Thank you so much for all your thoughts and prayers – they work miracles! Lots of love from KC, Kaylee!

5/12/10

Good news – I don’t have any blood disorders and surgery is on for tomorrow morning at 8 am! Pre-op was going great, or as well as can be expected, until they decided that they wanted more blood. My pinky toes are starting to shrivel cause of all these stinkin blood draws – LOL! Anyways, we did manage to complete pre-op this time, which is more than I can say for our last shot at it!

Well, I'd better go and get my rest with the rents today cause I gotta feeling that none of us are going to sleep the best tonight – for one, our nerves are a little edgy and two, I’m gonna be “on the wagon” so to speak (no mo’ milk) from 3am till after surgery! I just might be a little cranky! Those poor people won’t be able to get me sedated fast enough – rest assured I’ll be givin them a piece of my mind till they do! I hope this finds you all well, I’ll pray for you – please keep me in your prayers! XOXO, Kaylee

5/11/10

Hello from KCMO, my old stomping grounds! Well, our stay has already been three times as long as the last “surgery” date I had – HA! Now, to bring you up to speed! The preliminary test they ran to screen me for Von Willebrand’s disease last Thursday was negative – Woohoo #1! However, they still weren’t satisfied, so we headed down here after church on Sunday for another blood draw/test yesterday – Boohoo #1 (either I’m one good guinea pig for people to practice needle sticks or they’re extremely thorough – we’ll go with the latter)! If you recall, this test was to go one step further and check my blood platelets for any abnormalities. We just received word that all the levels were within normal range – Woohoo #2! There was one test (Ristocetin Cofactor Test) in which they’re still interpreting but I got on the horn to my fam back home and they did a little research to pretty much assure me that I’m just a normal little firey female with A+ blood!

Tomorrow is pre-op (again) at 10 bells! We’ll hope that this time we get a little further than we did last time! Oh well, like I’ve babbled bout before, everything happens for a reason! As long as the Woohoo’s keep outnumbering the Boohoo’s, we’ll be fine! I’ll be back tomorrow, I love you all – Kaylee.

4/29/10

Well, today was supposed to be my second surgery day, but we were thrown a curve during pre-op yesterday! While I was being examined, I had a bad diaper (more blood than usual)! They had a pow-wow with all the docs and decided that I needed more testing done before proceeding with surgery! To make a long story short, we headed back last night so we could await the results at home! They drew some blood before we left to check for a couple of different things! They are concerned that I may have Von Willebrand Disease (a blood clotting protein/factor issue), a blood platelet issue, or this was just one BIG false alarm (my food sensitivity issues flaring up)!
So for now, we are back in Hays waiting to hear the results, which won’t be until late next Thursday or Friday! Regardless, they are tentatively scheduling surgery for the 13th of May. Talk about a tailspin – but I guess everything happens for a reason! The good Lord has a plan for all of us and all I can say is that he deemeth me not done with this shunt yet! I will pray for all of you, please pray for me and my family – this isn’t easy on any of us! Love, Kaylee

4/17/10

What’s up my peeps? Well, I’m another month older and energetic as ever – must be this nice weather that we’ve been having! I can barely wait to go camping at the lake this summer – I’ve heard so much about it! Before we get to go wake-boarding, I gotta get this second surgery over with. I had my heart cathetorization on the 25^th of March and everything looked great, but it took forever to get a surgery date scheduled which would explain my tardiness in updating the blog – Sorry! Anyways, we’re headed to KC the 27^th of this month for surgery on the 29^th! They tell me to expect about 5-7 days recovery at Children’s Mercy before returning home – nothing like the first one!

Good news, the blood in my diapers has improved to where it’s almost nonexistent, but that’s come at a price! It was improving with mom and dad’s no-dairy diet, but they had to step it up another notch! They have since been put on the 6 food elimination diet (NO dairy, eggs, fish, gluten, nuts, or soy). What do they eat you might be wondering? Any meat (excluding fish), lots of fruit and veggies, and rice based products! Mom feels great and dad’s cranky cause he thinks he’s hungry all the time! He’ll survive - he was pudgy and his allergies were out of control anyways! To say the least, this diet has benefited all of us – how long we continue it will remain to be seen!

I know I’ve promised to be better about updating the blog and I’ve fallen short, for that I apologize! I could type all sorts of excuses but they’d all stink like the innards of my diaper genie, so I’ll spare you! I will update the blog near daily once we arrive in KC, so check back often – notice I put the “near” disclaimer in there just in case – HA! I love you all and appreciate your continued thoughts and prayers - Kaylee

3/14/10

Holy cow, I haven’t updated my blog in over a month – talk about slacking! Speaking of Holy – I hope everyone remembered to set their clocks ahead so they didn’t sleep through church! My mom and dad really don’t sleep on a set schedule anymore - I’ve taught them that time is irrelevant, and the world revolves around ME!

Where do I begin? Well, just to jog your memory – my name is Kaylee Jean Stuart and the rents have given me the handle of “BEAN”! I’m a scorpio with dirty blonde hair, blue eyes, and I pack an 11 lb. punch. I enjoy long stroller rides around the city, interacting with my puppy Bosco, sittin big in my bumbo, and attention! Turnoffs include tummy time (I’m getting better about it), nap time interruptions, Bosco’s intense head shake (scares the beJesus out of me), and cow’s milk protein. Cow’s milk protein you ask? Well, I’ve been having some issues with some blood in my britches – my docs seem to think that I’m sensitive to cow’s milk! So guess what – ma and pa are on a non-dairy diet! Dad’s not too bright and told mom that he’d do the diet with her – I have to question this man’s intelligence! It’s been an adjustment for everyone to say the least, but has definitely helped – both with my tummy and temperament! My last appointment was 2/19/10 in KC and everything looked satisfactory on the repeat echo, so I’ll have a heart catheterization done on the 25^th of this month to lock down the second surgery date. Right now it is looking like I’ll have my Glenn procedure performed towards the end of April or first of May.

As for life in general – all is well! I’m growing fonder of Bosco all the time – I watch his every movement and really like to pet him! I hear that we’ve got plans to go camping this summer at Lake Wilson – my momma picked me out a very figure flattering green two-piece with a matching hat, I be stylin! My dad might get his garage done one of these months – talk about one sweet oversized doll house (mom and I still let him think that it’s a mancave though)! I promise to be better about updating the blog! I love you all and look forward to getting out and meeting more of you now that the weather is warming - Kaylee

1/16/10

Happy 2010, just a little late! Wow, where does the time go – I’ll be 10 weeks old on Monday (1/18/10)! They say time flies when you’re having fun, and boy have I been having fun with my family! Since I last blogged, I’ve grown up a bit and gained some mad skills! I weigh just over 9.5 lbs and still have the title of momma’s little milk monster. I coo and caw a good deal of the time – especially when I’m getting my diaper changed. I frown bosco down when he gets a little too close and I crack smiles at mom and dad all the time! I’ve also acquired a new ninja skill – I pretend swallow my meds and when mom and dad least expect it, WHAMMO – I spit it in their face!

Yesterday I made a trip to the big city to see my docs! All went very well with minimal testing! They were pleased with my weight gain and didn’t feel the need to repeat my echo and EKG. Now for the bad news – I got my second Synagis (RSV) shot and WOWZERS it hurt! Nothing that my momma and a bink couldn’t calm down after a good scream session! I’ll pull through, but I told Bosco that I wouldn’t be doing any high kicks or roundhouse kicks for the next few days! FYI – I practice kung fu and even dabble in a little break dancing when I’m in my bouncer! To make up for my tardiness on blog updates, I’m gonna post a few more pics! I wish everyone a happy and safe 2010! All my love, Kaylee

Christmas Day

Merry Christmas peeps! I hope this fat chewin session finds you all well and with loved ones! Well, we beat the “storm” in our travels to and from KC – whatta joke (we pushed through worse on my original pilgrimage home)! I’ll have to admit that I was a little nervous about my two week checkup – I poo through about 5 diapers before my appointment at 12:45 on Wednesday (12/23/09)! I had myself all worked up for nothing cause my first outpatient visit went well (pic attached) until the nurse tore the leads from my flesh after the EKG and echo! I did not settle down from this until the folks confided that I would not be harpooned with any sharp, pointy objects at this visit! In retrospect, I guess it could’ve been worse? Dr. Kaine was his usual thorough, gentle self – I really like that guy! He was pleased with my progress – looks like mom and dad get a gold star for my care these past two weeks! I gotta go back to Kansas City on the 15^th of January for another checkup, but other than that, all is well with the Stuart family in Hays! Mom brought it our attention that I’ve spent more time in KC than Hays – how crazy is that?! Not for long though cause I like home and I’ve got a great support network with all you wonderful people! I hope that jolly fat man I’ve been hearing all about visits you – I know I’ve been good (a girls entitled to a couple of mulligans right)?! Anyways, don’t forget to wish the baby Jesus a happy birthday! I gotta belly full o milk and I plan on sleepin through this cold spell we’re having! Until next time, Merry Christmas, Love Kaylee

12/18/09

Hey blog readers, did you think I left you high and dry?! Notta chance, just been busy teaching mom and dad how to be parents! I heard through the grapevine that they used to pull some late nighters back in the day, so spare me the concern with me being up all night and sleeping all day?! Our schedules are really mashing well – as long as I get what I want when I want it, all is copasetic! The folks seem to forget that I’m running the show from time to time, but that’s nothing that a little tantrum won’t fix!

What’s new, you ask? Well, I’m gaining weight – tipping the scales at over 8.5 lbs, which is great! I had an appointment with Dr. Pope last Monday, and she was very pleased with my progress thus far! Mom and I had chiropractic appointments today, it’d been too long since my last adjustment! Somehow I acquired a very slight scoliosis – evident on the plethora of chest x-rays I’ve had over the days! We’re traveling to KC next Wednesday for a checkup with Dr. Kaine and probably a little last minute Christmas shopping – cmon a girls gotta shop when she goes to the city!

Don’t really know anything else, just ready for Santa to stop by my house! I hope this finds you all well and everyone has a very Merry Christmas! Love to all, Kaylee

12/9/09

Ahhhhhhhhhhhh! Home at last with my family! It was well worth the wait! I was released first thing this morning after the doctors rounded and advised to travel at my own risk so I gave dad the go ahead to drive us home! The roads weren’t too bad but the smokies were thick – don’t worry, we managed to avoid any run ins with them. We made it home late this afternoon and unloaded the family truckster before settling in for the day! We couldn’t get inside quick enough cause it was colder than a well diggers, well u know! I finally got to meet Bosco, and boy can that guy kiss! He’s super curious and he slobbers – A LOT! I thought that I was going to be able to meet everyone as soon as I got into town, but the docs ixnayed that in a hurry – they informed me that only family was to visit until my next check-up on the 23^rd of December! I am not happy with their decision, but it could be much worse – we didn’t think we’d be home for Christmas this year! So I’m gonna get fat over Christmas, enjoy some quality family time and then be giving out kisses over New Years – I plan on going out and kicking up my heels a little bit! I’m also going to devote a little more time to my family now that I’m home so I won’t be updating the blog on a daily basis. Don’t worry, I’ll still keep the gun smokin – I really don’t have a choice cause without all you wonderful people praying for me I would never have made it this far – I THANK YOU all so much and will keep you and your families in my prayers! XOXO from Hays, Kaylee

12/8/09

Whoa! What did I do to deserve today? I think I met every staff member at Children’s Mercy today and every one of them stopped by every time I was about to break bread! Talk about frustrating for me and mom especially – and dad too I guess; now he has two women in his life to give him an earful! Since I met every tom, dick, and harry around here today they’re going to let us go home tomorrow – HECK YEAH! One problem, somebody ordered a plethora of snow and bad weather………………….how am I gonna make it home to meet this Bosco fellow I’ve heard so much about? To stay positive and celebrate this festive event, mom and dad gave me another bath tonight after weigh in. I gained some weight, but I’m embarrassed about my puny gain - so we’ll just say that I’m a little under 8.25 lbs! I’m pretty tired from all the meetings today and I need my rest for the big excursion tomorrow – yes, we are FOR REAL leaving Children’s Mercy tomorrow and hopefully heading west! I had to make sure that I fit in my car seat with my snow pants and stockin hat, so enjoy the pic! Hopefully the next time I blog, it will be from my crib in Hays! Everyone stay warm and watch the weather, I know we’re going to – maybe we’ll get to do some 4 wheelin on the way home! As always, thanks for your thoughts, love, and prayers – my family is so fortunate to have you all in our lives! Love, Kaylee

12/7/09

Hope nobody had a case of the Mondays today, I avoided it for the most part! I say most part because my nursing habits were a little unorthodox today, but mom sat me down and had a talk with me! We worked out our differences and all is well now – I even put on some ounces today (1.58732828 to be exact cause we’re all counting)!

It was brought to my attention that I mislead some of my blog readers with my last entry about my whereabouts! The folks insisted that I make the whole car seat training into a road trip scenario. I told them that it was stupid and misleading, but they gave me some mumbo jumbo about age and wisdom? I gave in knowing that today would come and I could throw it back in their face, so just to clarify we’re still in KC til sometime this week!

Now, on with the news – I met my follow up cardiologist today Dr. Kaine today and we’re gonna get along real well! He’s impressed with my progress and says that I’ll be going home strong and soon! I had my emergency travel oxygen delivered today with my oxygen saturation monitor and training on how to use it, just in case. I haven’t needed any oxygen since the day following surgery, but better safe than sorry I always say!

I hear that it’s snowing back west, I hope this storm doesn’t screw up my FOR REAL travel plans – I’m more of a warm weather woman myself! Anyways, I hope everyone’s stocked up on the milk and bread just in case this storm hits as hard as they say – I’m set with the milk and carb conscious in case you were wondering? Stay warm, sled hard if allowed, and we’ll be home after the storm clears! All my love, Kaylee

12/6/09

I hope everyone went to church today, I couldn’t – they wouldn’t even give me a day pass?! Well, I said my prayers for everyone anyways and I know that many are being sent my way! Today I was placed on PCS (parent care status) – better pray EXTRA hard for me (JK)! Basically, it means that I’m making good enough gains that they feel I’m about ready to go home as long as dad and mom demonstrate enough parenting smarts! All joking aside, they’re doing the same thing they’ve been doing in caring for me – we’re just signing off on a bunch of red tape so to speak.

I am pleased to announce that I am road worthy! What does that mean you ask? Well, basically I had to sit in my car seat (in the room) the amount of time it would take to get from KC to Hays (~3.5 hrs.) with as many breaks as I deemed necessary and I passed! We did hit a couple of proverbial potholes along the way thanks to dad, but we made it safely in the end! The rents even dressed me for this occasion; I bet you all thought I only took pictures in my diaper and socks?! Where was I, oh yes, the potholes! So we’re west bound and down around Salina when I gotta eat! Dad pulled over and presto, mom had lunch ready to go – whatta lady! After my nutritiously delicious lunch, I needed a changing. Here’s where the snag comes in! Mom was busy, so dad decided to take the reigns! Dad couldn’t seem to hold the horses and jumped the gun on changing the diaper. Right after he had me all cleaned up and the new diaper in place getting ready to put the cream on my bum, I let him have it (#2)! His catlike skills, caught it all with the second diaper – mom and I thought my actions were cute; dad, well, not so much! After cleaning the cream from his hands, getting more wipes/diapers dug out, and calming down – he proceeded to clean me up again. Shortly after he placed the second clean diaper under me, I let him have it again with pee! There was nothing speedy about his reaction time on this one – he just stood there in awe as I peed all over the bed, my outfit (including the socks), and him! I just smiled and mom laughed – HARD! Dad couldn’t help but laugh after a while – he’s a total sucker already and I’ll be 1 month old tomorrow! Anyways, he finally got me cleaned up and we eventually arrived in Hays a half hour later than scheduled (in my diaper and new socks – mom had to make an outfit run later in the day)! All for now, XOXO, Kaylee

12/5/09

Hola, mi amigos, como estas – yes I’m bilingual thanks to the help of my old roomy! Well, I’m officially staple free as of this morning – I tolerated this session much better than the one before! I’m continuing to work on the nursing, which is progressing - although sometimes the progression is painful for both mom and me! It’s hard having to work for your food, I got spoiled with that NG tube! It’s also hard on mom – poor lady has to get up with me, on my schedule, throughout the night for girl time! Little does dad know that he’ll never sleep another restful night for the next 20+ years – it’s probably best we just leave him in the dark! However, he is becoming more useful every day, not only does he make a good custodial engineer but he also makes a rather nice backrest – see photo. The hearing test says I can hear, but that doesn’t mean I’m gonna listen – just FYI! Mom and dad passed their infant CPR training class, kudos to them! All I have to do is pass the car seat test and we are almost homeward bound! Oh, almost forgot, I did get a bath tonight with real water, not just a quick “wipe down” – talk about fun! Well, don’t have much else, other than the anticipation of meeting everyone is driving me crazy – but that’ll be a short drive if you know my folks! As always, please send me your thoughts/love/prayers and know that I’m always sending them to you all as everybody has their own cross to bear! Love from the city of Kansas - Kaylee

12/4/09

TGIF – maybe the last Friday I spend here, you never know?! Well, my morning began bright and early with a hearing test! I slept through most of it and have yet to hear the results, but the nurses tell me that most times no news is good news? Shortly after that I had the joy of having every other metal staple pulled from my chest, now that’ll wake a girl up! We met with the docs this morning and they felt that I was feeding well enough on my own that I could have my NG tube removed. I’ll have to admit that it wasn’t the most fun experience in the world, but then again it wasn’t my first rodeo! So now, it’s up to me and mom to get this whole feeding deal comfortably and productively coordinated! I’ve taught the folks a lot so far! I’ve taught them that the patience they had for each other doesn’t touch the patience they’re gonna need for me – HA! I think mom has realized that pound for pound I could be messier and smellier than dad – @ times! I’m still assessing dad’s usefulness, but that guy can field strip and clean a breast pump faster than greased lightning (talk about a tough guy – HA)! Anyways, I hope everyone has a good weekend, I plan on lying around and packin on some ounces! Please continue to pray for me! My family and I see proof that it’s working everyday! Thank you for your continued support, I love you all so much - Kaylee

12/3/09

Good evening blog readers! I got a change of scenery today – I moved to Room #4 on the 4^th floor of the Sutherland Tower at Children’s Mercy. My parents and I are extremely excited, we’re one more step closer to going back to Hays! This floor is so much more relaxed than the PICU – you getta use your cell phone, you have your own private bathroom with shower, and you also have a minifridge (unstocked of course)! Moving up to the 4^th floor meant I had to get another bed – a big, big girl bed, but I look pretty tiny in it! I wonder if it’s just so there’s more bed to catch my binkies when I spit them out – I think I burnt through 5 or 6 yesterday?! As for now, I am continuing to figure out this whole eating on your own deal? As long as dad, mom, and I all get our rest and no one gets frustrated, we all get along rather well! Oh snap, it’s about 6 bells, and you know what that means – the gravy train with biscuit wheels is near and I’m NOT gonna miss it! XOXO - Kaylee

12/2/09

Hi everybody, how’s it going – can you believe another week is ½ over! My day went pretty much as planned! I had my chest tubes taken out early this morning along with a little morphine to help me through that ordeal. Not bad, just spent a couple of hours in lala land afterwards! Occupational therapy (OT) stopped by early this afternoon and checked to see how I would take to feeding from a bottle? Mo, the OT lady, said I did extremely well – I put down 10mL’s in about 5 minutes! The plan for now (the next few feedings every 3 hours) is to do a combination of feeding – I’ll nurse for extra calories from mom, bottle feed an increasing given amount, and then receive the rest by way of my feeding tube. You know what that means – SLEEPOVER w/ the rents! I think I’d do better with mom and the bottle if I had that stupid feeding line out, but I’ll be cooperative for the time being – I’ve progressed far beyond where anyone thought I’d be considering I had surgery a week ago yesterday!

The next big “hurdle” is basically my feeding. Bottom line, I need to take in more calories than I burn to put on some size! They say that I need to gain between a ½ and 1 ounce per day to progress satisfactorily. I’m catching on to feeding from mom and the bottle but my throat is still kinda scratchy and sore from all the tubes being put down my throat, but that will get better with time! I’ve got everyone’s dream diet, I eat as much as I want to gain as much as I can……..maybe they could sneak a DQ blizzard down the tube (that’s milk right)?! Good night to all, forget about counting sheep – I’m countin cookies! Keep praying and sending love my way cause I’m doing the same for you all – Kaylee.

PSS. My music therapist scared up an IPOD today – I guess some Mary chick had a little lamb?

12/1/09

As Lynard Skynard would say, Tuesday’s gone and I had a good Tuesday – hope you all did as well! This morning I got to drink some yummy contrast and have an upper GI study (the scope job) performed to check for acid reflux and I passed – YEAH #1! However, the orders did not get put through in time for occupational therapy to evaluate me, so that will be first thing in the morning! The nurse said that by the way I pulled down the contrast, she thinks I’ll have no problem eating on my own – YEAH #2! I had a routine echocardiogram over lunch to check the status of the re-plumbing and am awaiting the results, but not worried about it as well as I’m feeling! The docs consulted and informed us that I will probably have my chest tubes removed tomorrow that were draining off excess fluid from the surgery – YEAH #3! My meds are well adjusted and I’m on full feed through the feeding tube with zero probs. Hopefully tomorrow I’ll be eating on my own and we can see about getting this feeding tube removed from my nose, esophagus, stomach, and small intestine! I don’t really have much else to blog other than I’m ready to go see my room and my puppy at home! I love you all dearly and ask for your continued thoughts and prayers – Kaylee

Ps.The Nuge has my approval – mama told me of a concert her and dad went to somewhere in the black hills at a little place called the buffalo chip and what a good time it was!

11/30/09

Bad news………………..I got kicked out of my private suite, JK – actually I’m doing well enough that I had to move rooms and get a roommate! Today I made a lot of progress and received more good news! I had my arterial and PICC lines removed early this morning and have been increasing on the milk each hour throughout the day (I’m up to 14 mL / hr. as I blog – target is 16). Dad and mom could not believe it when they came to visit me this morning and see that I was only on one continuous iv – milk! That’s quite the improvement from yesterday (check out the stands o’ drugs in the ccchhheeeeeeeeeeeezzz pic from yesterday)! Late this morning, I had the pleasure of having another tube snaked down my nostril to check out my vocal cords. Why they had to do this is beyond me, the nurse on 4th floor could’ve told you my vocal cords were fine by the way I was whaling during the “procedure”?! None the less, they confirmed that my vocal cords are intact and functioning anatomically. I did a lot of bonding with mom and dad today and gave them plenty of practice changing diapers and bedding, my input and outputs (both ends) are working satisfactorily! Late this afternoon, the nurses received orders to remove my central chest line which wasn’t painful at all, except when they tore the tape from my skin – that only leaves one iv in place on my left wrist!

CONSUMER ALERT : podsafes are defective cause somebody ninja swiped my IPOD or child life just felt that I didn’t need one at all, looks like I may close the chapter on this uncle ted guy after all! Tomorrow, I get a scope job from the top down and a suck eval from occupational therapy to see when I start feeding by mouth! Anyways, they say the roommate deal is temporary and we’re that much closer to going home since I’m stable enough to make the move(s)! I could never have made it this far without a lot of thoughts/prayers/love from you all – for that I am forever indebted! After while crocodile, Love Kaylee

11/29/09

Today was a sad day for me, my granddads and grandmas had to drive back home while my two aunts jetted back to Denver. I don’t know who the goodbye was harder for – me or them, but everyone rest assured that the good Lord is watching over me and the folks while we are here! Not a lot of news for today; had to tweak the blood pressure meds and my milk consumption a little, but that is par for the course. I’ve been a little cranky today trying to adjust to my new big girl crib, but mom and dad ain’t seen nothing yet – I’m still flexin the pipes little by little since having my breathing tube removed!

Tomorrow they are planning on removing the last two pacemaker wires that were left in place for an emergency situation. IPOD status = still busted (the motor city madman is still unbeknownst to me)! Not much else – check out the pics below! Love you all and please keep prayin for me – KJS

11/28/09

Hey everybody, how’s it going? I had a real nice, relaxing Saturday! I’m blogging tonight from my momma’s arms :-)! Today was very uneventful compared to yesterday! However, tonight the docs said I could be held – oh how I missed everyone holding me, especially my mom and dad! I don’t know if I’m gonna let them go home tonight?!

They did take me off of all my nitro heart meds and I am responding extremely well! The drs are talking about bumping me up to 4 ml’s of milk / hour via iv depending on how my system responds. Tonight they are going to swaddle me and monitor my temp – if all goes well I will be in a big girl crib tomorrow! Oh yeah, that IPOD I was telling you about, I gotta bunk set of batteries and child life’s got the weekend off – maybe I can borrow dad’s and figure out who this Mr. Nugent guy is?

I’ll post some pics tomorrow, ain’t gonna take the time tonight, this holding thing is a forgotten treasure! Hope everyone has a safe rest of the weekend and my family all makes it home safely tomorrow – I sure am gonna miss them! I love you all and appreciate your continued thoughts and prayers – Kaylee

11/27/09

Whew, whatta day – but probably my most productive day! This morning Dr. O’Brien sewed up my chest after they covered most of my body with betadine – boy was I good and sterilized! Mom and dad gave me a bath and changed my bedding immediately after and that was a good time – I think they enjoyed it more than me, I was still pretty drowsy! I pretty much took the rest of the morning off and caught some z’s while the nurses signed my family in and out and in and out and in and out – JK, I love them so much (mom and dad tell me all the time how fortunate we are for our family and friends caring for us)! Early afternoon I woke to greet my family and started to get my game face on for extubation. As an added bonus today, they decided to take out my catheter around supper time – what a relief to have that thing out! Lastly, around 9pm they felt I was breathing well enough on my own that it was time for the breathing tube to come out. I was tired of having that tube in my nose and throat anyways, not to mention how uncomfortable it is was every time they decided to suck out the boogs!

Oh, I almost forgot, I got an IPOD today with some tunes. The music they loaded on it is debatable and it’s only 2 channel stereo (notice the gigantic speakers in the pics), but it’s a start! Mom keeps telling dad that it is good to have soft lullabies but dad keeps leaning towards Ted Nugent – who is Ted Nugent anyways!?

Like I said, it was a GREAT day – more proof that everyone’s thoughts and prayers are being answered! Hopefully, with everyone’s continued prayers, I’ll be home sooner than later – until then, Love from KC - Kaylee

11/26/09

Happy Thanksgiving everyone! I hope everyone ate responsibly today – I didn’t really have a choice! However, I did get started on some electrolytes (more less Gatorade) and some lipids (cheeseburger and fries in a sense) today. The docs even said that I was doing well enough that I could start getting 2 mL’s of milk / hour via iv :)! I also had my temporary pacemaker disconnected today because I’ve been over-riding it for about the last 24 hours. I could not have asked for a better first Thanksgiving – given the situation! I got to visit with my family lots today and got plenty of attention!

Tomorrow morning at 9am I get my chest sewn back together – my swelling is under control (I have 3 oz. of fluid left to lose to get back to pre-surgical status.) I am improving extremely well, all my meds helping me maintain my numbers are at minimal doses! After my stitch job tomorrow, mom and dad are going to give me another bath to wash off the betadine – hopefully I’m in a better mood after this bath! The nurse told us today that if I keep improving at the rate I have been that I could possibly be off of the ventilator by the end of the weekend! Guess what that means – holding time with mommy and daddy and that much closer to nursing again (mom calls me her little milk monster)! Check out the pics I’ve attached below – I appreciate the continued prayers and support as does my family! XOXO, Kaylee

11/25/09

Hello everyone – hope this finds you all well and that your day went overall as good as mine! After I blogged last night, I went a little unstable around midnight and had to have some help from my temporary pacemaker - my rhythms weren’t so rhythmical, so to speak! Anyways, I got some help from the pacemaker and some medicine, but have since recovered with no real issues today. Mom and dad slept (kinda) in the lobby last night after finally leaving my side around 3am! Today, I’ve been visited by a lot of family multiple times and I love it – I know this because I witnessed it on occasion with my own two, groggy eyes! Although I’m still heavily sedated, I can move my arms and legs around as well. Today, since mid to late morning, has been a restful day for everyone – myself included!

This just in, I’ve been weaned off my heart medicine for my arrhythmias! The pacemaker is still hooked up, even though my heart is doing all the work, it’s there in case of an instability issue! I wish everyone a happy thanksgiving – I’m gonna get some more rest, watch some football, and enjoy my iv turkey dinner! If all goes well – they’re gonna zip up my chest on Friday which means the next step is getting off of the ventilator! Please keep praying for me, Love to all, Kaylee

11/24/09

Greetings from 2^nd floor (PICU) in recovery after surgery! I’m settled into my new room since about 2:00 pm this afternoon, with my family keeping a close eye on me along with all my docs and my very own, full-time nurse!

I’ll give you the lowdown on today’s activities. First mom and dad came to bathe me at 6am (which I did not appreciate to say the least…….they woke me up) but they totally redeemed themselves by holding me for about an hour! Then it was off to surgery with Dr. O’Brien and his cardiac team, my recollection becomes a little fuzzy at this point! From what I’m told, surgery went quicker than expected with no real problems or complications – my whole family was eagerly anticipating my return! Mom and dad were there quickly after I arrived on 2^nd floor in the PICU to greet me, although I’m still heavily sedated and probably will be for the next several hours to day(s)! I’ve been strong and stable for the most part, although I had a little hiccup upon mom and dad’s initial greeting – my blood pressure dropped rather quickly! Not to worry – my docs and nurses worked quickly to help me regain my ground and then some. They tell me that my first 24 hours are the most critical and that this sort of thing can happen? Anyways, my numbers are strong now and the parents are sleeping over with me tonight - we could all use a little rest! Words can not begin to express how grateful I am for all your love, thoughts, and prayers but please continue to remember me as I recover! Good night, don’t let the bed bugs bite - Love, Kaylee

11/23/09

Woohoo, I’m feeling good and ready for my surgery early tomorrow morning! I’m two weeks old today, can you believe it! I had the best day yet today – I know everyone’s still pullin for me and we all appreciate it so much! Mom and dad would not put me down today, probably cause they won’t be able to hold me for a while after surgery! I was baptized today by the Methodist Chaplain at 4pm as scheduled and all went well with all my grandparents in attendance! I also got to meet my Aunt Kelsie for the first time today and my Aunt Roxy also came in from Denver!

I am scheduled to begin prep for surgery around 7am tomorrow morning – the surgery is suppose to take around 3 hours! I have grown incredibly tired of my plastic hood and have begun to tear it apart – it’s a good thing surgery is on the horizon! Pretty please, pray especially hard for me tomorrow and the days to come as I recover! I love you all and look forward to meeting you – SOON, Kaylee! Ps. Below you’ll find some pics from my baptism today!

11/22/09

Sunday, the day of rest, and what a good day it was – thank you for your prayers and support! I had another strong day today and am continuing to rest up for Tuesday! Dad, mom, and I met with the chaplain again today and set a time for my Baptism tomorrow at 4:00pm. I will have both sets of grandparents their in attendance and my other two aunts will be landing shortly thereafter from Denver – I’ve enjoyed my Uncle Landon and Aunt AK these last couple of days! I can’t wait for my family to arrive and be here for support during my surgery and recovery! It’s late – I think we could all use a little shut eye, more details to come! Later alligator, Love, Kaylee

11/21/09

Hi everyone! Just a quick note today to let you know that my stats were okay today – my pH levels needed a little tweaking! Not a big deal, just had to have a little acetate and sodium bicarbonate added to my electrolytes to help out! I found a replacement for my binky today – check out the pics! Mom and dad held me a lot today and I got a lot of good rest as a result – I know I’m gonna need it with my upcoming surgery! Thank you for your continued prayers and support! Catch you later, lots of love, Kaylee

11/20/09

Greetings from Children’s Mercy in KCMO! I hope everyone’s week went as well as mine did – hopefully everyone can get a little R & R this weekend! I know I say this all the time, but THANK YOU very much for your prayers and concerns, because of it I continue to receive good news! I heard through the grapevine today that my first surgery (Norwood procedure) is scheduled for Tuesday (11/24/09)! I don’t know where on Tuesday’s schedule I fall, but tentatively I will have surgery on that day. If an emergency should occur before me or my condition lessens, I could be put on hold but hopefully not for long! I know it was a big relief for everyone to know I would have surgery before turkey day – the care is EXCELLENT here but we all want to go home to our family and friends! I really don’t have much else to report other than I hope and pray my #’s stay strong, gets lots of holding time with the rents, and see plenty of family before the big day! I miss you all and love you all - lots, Kaylee.

11/19/09

Well, tomorrow’s the big day – I’ll hopefully find out when next week I’ll have my surgery! A definite date would make everyone’s life the easiest, but we’re not expecting that at all! I really have no news to share with everyone other than I had a really strong, stable day! Mom and dad held me for about an hour each today and got to give me kisses when they put me back in my bed! I really miss them and I know that they miss me by the way that they look at me! Please keep me especially in your thoughts and prayers tomorrow as I would really like to get this first surgery underway ASAP! I appreciate all the wonderful things everyone is doing for us; mom and dad tell me how lucky we are to have such a great family and group of friends! Below, you’ll find a couple more pics of me and the folks, and yes, that is a needle (iv) in my noggin that I like to tug on! All for now, gotta get some shut-eye. XOXO, Kaylee

11/18/09

Hello everyone, hope your week is going well – ½ way through! My week continues to go well, thank you for your continued prayers and support! I had another chest x-ray today and my lungs are somewhat congested despite what everyone hears, but it’s nothing to be concerned about they tell me! They’re going to give me another dose of lasix to help with the fluid – I’ve still got some swelling in my face, hands, and feet. My echocardiogram came back even better than the previous two – my tricuspid valve continues to get stronger everyday!

Guess what? Mom and dad got to hold me today and we all very much enjoyed it even though I had to stay under my hood! I’ve been behaving for the most part, but my binky is not as satisfying as it used to be – I’m ready to go back to nursing! Anyways, we’re eagerly waiting for Friday (11/20/09), that’s when my cardiovascular team meets and hopefully sets a date or at least gives us an idea when my first surgery will be next week! I’m ready to go back to northwest Kansas and see all my family and friends!

11/17/09

Happy Tuesday! I received a lot of good news today! I really appreciate everyone praying for me! We learned today that my “infection” and concern over extra needle sticks was more worry than necessary, so I have been taken off of all my antibiotics! I’ve also been taken off of my dopamine which was to help with my perfusion and my prostaglandins are at a minimum! My lungs continue to remain clear of any fluid and I’m giving mom and dad plenty of opportunities to change my diapers! As long as I’ve got my binky, I’m happy – but if not, I let the F-pod or wing at Children’s Mercy know it! Love to all, Kaylee!

11/16/09

I had another good day today, other than I was stuck several times in unsuccessful attempts to get a peripherally inserted central catheter or PICC line going. They tried a couple of times last night without success, and decided to let me rest until a specialist PICC nurse was on duty today. She tried two additional times late this morning without success – I found much comfort in my binky while being stuck with that gigantic needle and remained surprisingly calm until they pulled the restraint tape off my arms – OUCH! Finally, they decided to have a doctor insert the PICC line with the use of an ultrasound and video fluoroscopy to find a suitable vein early this afternoon! I have since settled down and am recovering from my eventful day.

The nurses have been watching my stats closely and examining me routinely! As of this morning, they heard no fluid on my lungs – probably cause I’m peeing like a race horse thanks to the lasix! I’ve had a couple of diapers weighing over 200 grams with pee only! They also told the family today that my so called Staph infection was only a contaminant and not an actual infection, but since I’ve been stuck with so many needles they’re going to have me finish my ten days of anti-biotics – I’m on day six of ten! Below, you’ll find some pics we took today of my crib – I’m cuddlin with my bear shoog! All for now, love you guys!

11/15/09

I had a really good weekend - especially Sunday, your prayers are working! My blood gas levels are cooperating better as are my oxygen saturation levels. My goal before surgery is to maintain a strong, stable balance of all my vital stats/numbers! I've had clean blood cultures (staph infection free) since 11/11, so ten days of anti-biotics from that date and then three to four days on my own with clean blood cultures before surgery. All is well, I see mom and dad often and have excellent care from all my nurses and doctors watching over me!

Bringing you up to date

My status as of right now is stable! Somehow or another I contracted a staph infection and am on antibiotics to help clear up before my first surgery (the norwood procedure). So far I am on my 3rd day of negative blood cultures so that is good! The nurses and doctors are continuing to watch my blood gasses, O2 saturation levels, and other vital statistics.

On Thursday, mommy and daddy got to hold me and I really enjoyed that! Mommy and daddy really enjoyed that too but the doctors and nurses say that I need to stay close to my bed and under my hood to keep my O2 saturation down. If my levels don't cooperate I may have to be put on a ventilator but I will need that for surgery anyways - so if it happens, it happens!

In order for me to have surgery, I need to be infection free and off my antibiotics for 3 days so we are looking at the 1st of 3 surgeries in about a couple of weeks around Turkey day. After surgery I will have about 3 to 8 weeks of recovery time which I will be up and down since they are essentially re-plumbing my heart!

Daddy and Mommy are coming to visit me several times everyday and are staying at the Ronald McDonald house. They tell me that everyone there is really nice and very supportive. My parents have also told me that they receive countless calls from all their friends and family who are concerned! I know that they feel bad for not returning a lot of calls, but they really appreciate the support! I thought the least I could do was set up a blog to keep everyone informed while here at Childrens Mercy Hospital.

That is all for now and I will try to keep you updated often! Thanks for all of your prayers and thoughts, I love you all!

My Story!

Hi, my name is Kaylee and I was born on November 9th at 12:02am via C-section! I weighed 7lbs. 14 oz. and was 21" long. I have dark curly hair and steel blue eyes. It's hard to believe by looking at this picture that I was born with only the right side of my heart - I have a condition known as hypoplastic left heart syndrome or hlhs for short. We didn't know this until about a day and a half after I was born when my pediatrician, Dr. Pope, noticed I had a heart murmur at a routine exam. Dad was busy helping mom get ready for the day so we could rest up to go home the next day (Wednesday - 11/11/09), when the news was broke. Daddy and I were flown to KC downtown airport and then rushed to Children's Mercy were I had an echocardiogram and other extensive testing done. My Grandads both made sure that my mommy and grandmas were there as soon as possible to help care for me - you'd have thought they were Nascar drivers by the way they were driving from what I hear!

Kaylee Stuart

Tuesday, September 3, 2013

I love my sissy

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Blog Archive

About Me

9/25/10

Rub-a-dub, dub, Bean in the tub

Stop! What mess?!

Bean in a basket!

Rhinosaurus

Wedding danced myself to sleep!

Organizin the diaper bag while we wait on the docs!

MOM, STOP taking pictures!

5/18/10

Waitin on the paperwork!

Ready to roll!

5/17/10

Readin to mama!

6 mos goin on 16

Dr. Beans gonna remove the patch!

5/16/10

My head ACHES!

Sleepin in with mamma

Really? Pictures again?!

Clownin Around

What's bigger? My size 3 pamper or dad's double chin?!

Nice tape job!

Still got it!

Bath time!

5/15/10

5/14/10

5/13/10

Game Face is ON!

Dad needs to ZIP IT!

Momma and me post-op

5/12/10

Afternoon siesta with my momma!

5/11/10

HAHA, Bob thinks he's goin!

Another Needlestick?!

4/29/10

4/17/10

Bosco's on Cleanup

Self-Medicating

Mom and Me Waiting for the Easter Bunny

Me and the Easter Bunny

T-R-O-U-B-L-E

You Flinched

3/14/10

Happy St. Patrick's Day!

Love the view!

U thinkin what I'm thinkin?!

Cathcin Rays with Mom

Spit Happens

Helpin the lady out with the echo

Now that's funny!

1/16/10

Me and Bobby - we're tight!

Bean in a bumbo

I love this lady!

Check-up

They think I'm sleepin!

It's gonna curl

COOOOOOOOO

Mischief

Merry Christmas

A little drafty in the front!

Is this necessary?!

Christmas Day

Vogue

So fresh and so clean clean

Rockin out in my swing

12/18/09

Me and slobberbox

NOT a fan

West bound and down

12/9/09