Surprise! Surgery!

Wednesday night: I noticed that the closure nub (seriously, there has to be a better name for it, but I can't think of one!) on KayTar's g-button was breaking. Except, I noticed it in the middle of the night and by morning, I thought it was a dream!

Thursday: After school, I remembered the dream, so I checked her button to reassure myself...except that didn't go to plan! It was breaking and almost completely broken off by then. Oops. I called the surgery clinic and left a message that her button was breaking and it wasn't urgent yet, but maybe they could get us on the schedule for Monday?? It felt a little too hopeful to me, but I REALLY did not want her to miss another performance. I bandaged her button up, so it wouldn't get tugged on during costume changes and off we went to the musical! I was the backstage parent that night so Josh would watch the play with his family, but evidently it was a PACKED house and the applause went on FOREVER! We could hear it from where we were! So cool. 

A picture a cast mate drew for KayTar backstage. 

Thursday night: When it was time to hook KayTar up for her last feed, I called Josh upstairs to show him what condition the button was in, except when I opened the button the closure nub was GONE. It had broken off and was lodged inside. Ack. Josh used the venting tube to push the nub through, then we fed her, then we hooked an extension to her tube, clamped it off, and secured it to her belly to keep stomach contents from leaking out. Normally it doesn't matter if the nub is broken, the internal anti-reflux valve should keep stomach contents in, but her valve has been blown since she got this button which complicated things a bit. I secured the tubing to her with hypoallergenic paper tape, BIG MISTAKE! I think that was the worst part of this whole ordeal. She broke out in hives in the morning and her skin is still damaged from it. Josh had the brilliant idea to use an ACE bandage instead and it worked like a charm!

With her new surgery buddy...

Friday morning: I called surgery again and left a message that the button was totally broken and we would need a replacement sooner than later and was told the nurse would call me around 8am. I gave KayTar Gatorade and cornstarch to keep her glucose up, but also get her closer to NPO status in case she was going to have surgery. Around 9, nobody had called me, so I called and left a message and marked it as urgent, only because I needed to know if I should keep KayTar NPO or not, it is a dangerous game with a kid who deals with hypoglycemia. Nobody returned my call, so around 10:30, I called again and was in the process of leaving a message when the nurse beeped in. She was SUPER rude at first, "Mrs. 'Tar! That tab breaking is NOT urgent! Unless stomach contents are shooting out of her tube, it is NOT urgent!!" To which I replied, "The internal valve has been been blown since she had this button placed, so YES, stomach contents WOULD be shooting out if I hadn't attached and clamped off an extension tube and secured it to her belly, but that is not the urgent part...the urgent part is that I've only given clears to a child with ketotic hypoglycemia in case she has to be NPO for surgery today." Then she was sweet as pie to me and very helpful. People should not mistake me for an imbecile, honestly. She said to keep KayTar NPO and she would call me back within an hour with more information. She called back and said that KayTar's surgeon couldn't do it, but she had called the on-call surgeon and would call me back as soon as she heard from her.

Friday afternoon: A bit after noon, the nurse called me and said the surgery load was light and we could come down and go to day surgery right away. We signed in, went through all the pre-op paperwork and interviews, talked with Child Life (which triggered a very sad little breakdown from KayTar about the gas mask they use), and all of that jazz. During her history, I mentioned to the NP that KayTar had had a possible bad reaction to LR during her sedated MRI (this is important later) and it caused persistent hypoglycemia/labile blood sugars for 24-48 hours. I guess she did not document this in her chart. (hint: foreshadowing )I spoke with the resident and asked him if they could start an IV for her and give her fluids, because her glucose was sitting at 70 which is the bottom of okay for her. He said that they would give her saline and D5, which is exactly what she needs in that scenario, so I thought that was that. (hint: more foreshadowing) In the holding area, KayTar decided that she would rather have an IV that be put to sleep with the gas, so the nurse anesthetist gave her one, complete with a "rainbow fist of power" as KayTar had requested. I got a call shortly after from the vice principal of the kids' school asking if BubTar could stay for detention to finish a delinquent assignment. AGH! For the record, this is not how I had imagined my Friday. Once they took KayTar back, I went back to the waiting area and updated Facebook and watched The Office via Netflix while I waited. She was in and out quick, as usual.

Friday night: When I went to see her in recovery, one of the first things I noticed was the bag of fluids she was connected to....LR! Agh! I told the nurse that she had had a previous possible adverse reaction to LR and he shut it off right away and called the anesthesiologist. Turns out the NP hadn't made a note of it and the resident who was supposed to be in her surgery and told me that he would start her on D5 and saline was not in her surgery, because she was moved to a different OR. The anesthesiologist was very apologetic and from now on I will tell EVERYONE on her case that she shouldn't have LR, so this won't happen again. Thank goodness it isn't a super serious life threatening thing, but crazy blood sugars are no picnic! Her glucose was 71 when she came out of surgery. I gave her 2 ounces of Pedialyte. Her glucose was 69 at the next check. Then I gave her some Sprite. Her glucose was 62 at the next check. WRONG DIRECTION. I gave her 2 ounces of apple juice and it finally came up to 90. I wanted to wait for one more check before we left, and it was down to 80 just 15 minutes later. 80 is a perfectly fine number, so we decided to book it, even though it wasn't looking incredibly stable. I didn't want to sit there all night because of the what ifs. By the time we got home, about 45 minutes later, her glucose was already 60! Unless something is wrong, her glucose stays well above 70. I was able to get it up to 90 again before she fell asleep with a melted popsicle/formula mixture and then I hooked her up to the pump and set it to give her 45ml every hour through the night, so her glucose wouldn't have time to drop. She tolerated it well and it was a perfect solution! Her glucose was 111 in the morning. 

New button!

Saturday: We kept her on interval feeds for most of the day and she spent most of the day sleeping...until shortly before we went to the high school for the final run of Oliver! but more on that later... :)

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!

The operation was a success.

KayTar's didn't have surgery this time...her baby did! A friend sent us an unopened, expired g-button so we could place one in a doll for KayTar. I spent Friday night trying to figure out if we could place it in Baby Alive and maintain her GI function, but without some sort of tiny doll MRI machine, it was highly unlikely. (We did try placing her in front of a super bright flashlight to try to visualize where her internal tubing was, but no luck. Do we know how to have fun on a Friday night or what?!) So today I picked her up a new chubby baby and prepped her for surgery...

I marked her incision site with a sharpie.

Surgery was a success!

Recovering well post-op.

Waiting to see her parents.

Ready for discharge!

So, do you think I can put this on my med school applications? ;)

KayTar had surgery, again.

On Wednesday night, while on my volunteer shift, I remembered that I hadn't told Josh which meds KayTar needed so I gave him a quick call. After my shift, I noticed two missed calls on my cell, so I called Josh back. He said, "Hey! I've got great news!" a little too enthusiastically. I said, "Really? Great news?" and he said, "No. Not great news. I figured out why we've been having some leakage issues with KayTar's tube." I was walking out to the parking garage by this point, so I stopped, wondering if they would be coming to me instead of me to them. He explained that the outer portion of the g-button was detaching from the inner tube.

Image borrowed from http://bieho.blogspot.com/

That flat portion lies on top of her skin, and the tubing goes down into the stomach, where the mushroom hold it in place. Well, the tubing was splitting off of the outer portion and if it had full split, the inner tubing would have falling in and the stoma (hole in her skin/stomach) would begin to close rapidly. Josh said it was only about 25% split, so I headed home and we decided to deal with it the next day. I looked at it when I got home and it was actually about 50% split, and every time we looked at it, it seemed to split more. I emailed our pediatrician and she said to call the surgeon's office when they opened.

The office didn't open until 9am, so I took KayTar to school (with her tube taped, so that it wouldn't get pulled or tugged and split further) and I volunteered in the library as usual for a Thursday morning. I started calling a little after 9am, initially I left a message with the nurse, but because my cell gets TERRIBLE reception at the school, I called back after 10 minutes or so, trying to get someone to tell me what we needed to do. The person who I spoke to said that if it needed to be switched in the OR (which is does, because it is held in place by that hard mushroom which they have to jam a rod into and then jerk the thing back out through the little hole, then do the same thing in  reverse to place the new one), then we needed to go the ER to be admitted to surgery. I told her that last time, we came in through the clinic and were sent to day surgery, but she said they couldn't do that. We had to go to the ER. Then she transferred me to the nurse, which was voicemail again, so I called back. I talked to someone else who told me the same thing, then transferred me to the nurse, which was STILL voicemail. I called back again and talked to someone, maybe one of the same people, maybe not...explained the situation and the instructions I'd been given, and they said to go to the ER as well. So we went.

Luckily, our nurse friend M was on! I asked for her at registration and she came and walked us through triage. We waited in the lobby for about 10 minutes before getting called back to finish registration, and by the time we were finished there, M came to tell us she had a room open up! Thank God for small favors. KayTar loooooves M, so having her as a nurse would make the day loads easier...and it really did. She came and chatted with us, took KayTar on walks around the floor, played blocks with us...all sorts of fun stuff. We had absolutely ZERO reason to be in the ER...she didn't need an IV or meds, she didn't need monitoring, she didn't need vitals checks...we were JUST sitting and waiting for surgery to see us, much like we would have done IN CLINIC. KayTar was NPO and acutely aware of this because it was only a week since her fast, so every time she would start to get bored, she would get a little worked up about the no food/drinks thing. The surgical residents came to see us early on, one said they might do it in the ER without sedation and I wasn't coo with that. She sees too many doctors to be majorly traumatized, which is what OUR surgeon has told us many, many times. The rest of the day, roughly 11am-7:30pm was spent WAITING FOR THE SURGICAL ATTENDING. He refused to come down or give anyone instructions for hours. Everyone was frustrated and apologetic, from the nurses to the ER doc to the surgical residents. I was in touch with our pediatrician by phone and text, and she was annoyed with the situation, too. He finally came down a little after 7pm, tried to talk me into letting him do it bedside, which I said no to, and then he basically told me he had enough cases for 12-24 hours and he didn't know what to do with us. I said, "Can't you just send us home and give us a day surgery slot?" It was like he hadn't even thought of that! It took him one phone call and about 45 seconds to get her on the schedule and we FINALLY got out of there.

On the way out, I got a Facebook message from our nurse (who had gotten off shift before we were released) inviting us to dinner at her house with her and her husband. The first thing KayTar had said to M was "I need a BURGER!" and they were having burgers for dinner. I asked KayTar if she wanted to go and she did, so off we went. It was so nice and fun, and it made KayTar forget all the yuckiness of the day. She didn't eat a burger, of course, but she had a little sweet tea and a couple pieces of bacon dipped on mayo (she's all about the saturated fats, that girl). She had been NPO for over 13 hours, so eating anything was good. We hung out for a bit and then headed home, exhausted, but much happier than we were a couple of hours before.

Yesterday was the actual surgery and it was a BREEZE compared to the recent fasting study and day in the ER. There was brief confusion when the surgeon told the anesthesiologist that he wasn't going to do her surgery, so the very kind anesthesiologist found another surgeon for her, but at the last minute the original surgeon decided to do it after all. I got a certain not-so-wonderful impression of that particular surgeon, judging from the level of exasperation EVERYONE who was working with him exhibited over the course of both days. He did his job eventually, and that's all that really mattered in the end. On the way home, we stopped at my mom's for ice cream and then we all went to dinner at KayTar's favorite tex-mex joint. It was wonderful and she ATE. When we got home, she had a fever...not from surgery, but from the virus that had caused her to wake up all congested that same morning. I'm so glad it waited until night to start, because if she had woken with it, we probably wouldn't have been able to do the surgery.

Anyway, that's the latest drama. I missed school the past two Thursdays because we were in the hospital. I was supposed to shadow the pediatrician the past two Fridays, but didn't because we were in the hospital. It sort of makes me wonder what the hell I'm doing with all this school and medicine-related insanity, when I clearly already have enough medicine-related insanity right here at home. I don't know. I don't know what I'm doing...but I do know it kind of makes me want to do it all the more, because the ONLY thing that makes all of this bearable are the wonderful, kind people who are caring for KayTar. The system sucks, there are a lot of jerks and idiots out there and a lot of hoops to jump through, a lot of unfairness in how medical care is provided...but there are a lot of wonderful people in the system who go above and beyond. There are nurses who invite you to dinner after a long day, pediatricians who will talk to you on the phone while they are at home with their own kids, school nurses who research different types of g-buttons for you and send encouraging emails when you are stuck in the torturous throes of a fasting study, ER doctors who are attentive and apologetic when the issue at hand is completely out of their control. There are good people who are passionate about medicine and about caring for people and I want to be one of those people. The system is a mess, but those people...they make it a beautiful kind of mess.

This is what KayTar wore to surgery yesterday. It was QUITE a conversation starter.


PS: If you have g-button experience, I'd love to hear what kind of button you have and how you feel about it. We use a Bard, which requires the OR switch. The two defects we have encountered are common issues according to the surgeon, and replacement is a HASSLE, clearly. We like the Bard because it is lower profile than the Mic-Key and because although the swaps are a hassle, they are much less frequent than balloon ruptures, especially with a normally active kid like KayTar. We've been looking into the minis made by AMT medical and they look pretty nice. They have balloon and non-balloon versions that seem to address some of the issues with the Bard and Mic-Key. Anyone used those? If we have another Bard failure, we're looking to switch...so we want to research and decide before we get to that point.

My new best friend...

Otherwise known as KayTar's portable enteral feeding pump.

Zevex Enteralite Infinity.

I love this thing. KayTar loves this thing. Josh loves this thing. BubTar is even excited about it and had me train him on how to work it. He is also campaigning for his own hydration pack now, because he wants a cool backpack like KayTar.


We were out of the house from 10:30am-6pm today. In that time span, she needs two 8 ounce Pediasure feeds. In the past, we would be lucky is she drank 1/2 a Pediasure by mouth when we were out and about...to accomplish that, we'd have to say, "KayTar, drink." "KayTar, you have to drink your Pediasure!" "KayTar, don't forget your Pediasure." We'd plan our day around being home in time for her feeds most of the time. Today, we were out for HOURS and she was free to be active, participate in everything we did and she still got in two full feeds, and she also ate with us at meal time. It was awesome.



KayTar has grown so well that now she needs more calories and carbohydrates to keep up. She has recently gone from 3 Pediasure feeds to 4. Now that we have the pump, we can slow feed her the 4th while she sleeps. With bolus feeding, we couldn't do that.

The pump is very light. It comes with a small backpack that KayTar can easily wear while we are out and it also attaches to an IV pole for stationary/at home feeds. It is not gravity fed (unlike the Kangaroo Joey) when in the backpack so KayTar can do anything in it, even somersaults, and it would keep right on going. The programming is very intuitive and we haven't run into any problems with it. It was even covered by insurance. If you are looking for a portable pump, we highly recommend this one!

Well, that was unexpected.

Yesterday, my big plan involved buying myself new socks and resting a bit to fight off a cold. Instead, I spent the day at the Children's Hospital because KayTar needed urgent surgery!

Yesterday morning when Josh tried to give KayTar her usual morning feed, he couldn't get the Pediasure to run in. He tried flushing the tube with a syringe of water, thinking maybe there was some build-up in the tube, but it ran back out. He called me to look at it and I discovered that the stopper on the closing latch was missing...probably stuck in the tube, causing the blockage. DANDY! I emailed our pediatrician who told me to call our surgeon. I left a message with the answering service and started getting ready. While waiting for a call back, KayTar woke up and started coughing and vomited some. The coughing was causing fluid to leak out of her tube (the stopper seemed to have lodged itself in the valve, causing her stomach contents to spill out. Yummy, right?) I got a call from the pediatrician who had texted the surgeon who told her that he could squeeze us in between cases and to call the clinic and tell them that. So I did. While I was on hold with them (they had to page him to verify what I told them), the pediatrician called back and told me that the surgeon said to just show up at the clinic and they'd get us in, so I hung up on the clinic and started packing up for a day at the hospital. The clinic called back and said they could see us as fast as I could get there, so off we went, with everyone on the same page, finally.

KayTar has a Bard button, so it has to be switched out by the surgeons. It doesn't have an internal balloon to deflate, it has a hard mushroom that is difficult to remove and requires some force for both removal and insertion, so the surgeon has always told us that it is best done under anesthesia in the OR, so when we arrived at the clinic I made it clear that I did not want it done while she was conscious. The second consideration was her hypoglycemia and the fact that she had been NPO for a while, and the longer she was NPO, the more she was at risk for becoming hypoglycemic. That left us with two possibilities, going down to the ER, get an IV set-up, get admitted to surgery and wait for a surgery time to be scheduled or try to get her into day surgery as soon as possible, sidestepping the ER and admission, but possibly facing too long of a wait without any sort of carbohydrates or fluid. The surgeon we saw said that it could go either way, depending on the day and the case load in the OR and ER, but after talking to his colleague who was in the OR that day, he felt that our best bet was going over to day surgery and getting to prevent hypoglycemia.

We discovered the clog about 7am. We left home at about 9am. We arrived at the clinic at 10am. We were in the day surgery waiting room by noon. They took her back at 3pm. She was in recovery by 3:20. We gave her a test feed of Pedialyte at 4, and we were released at 5, after she kept it down for an hour. We were home a little after 6pm. It was a crazy day, definitely not what I expected when my alarm went off yesterday morning, but I'm glad it went as smoothly as it did. KayTar came through surgery like a champ, her biggest complaints yesterday were discomfort from her tummy leakage and the removal of her chest electrodes (she's actually still wearing one today). My little cold took the opportunity to morph in to bronchitis, it seems, but all in all, everything went really well. If it had to happen, at least it happened yesterday when my major finals were already over!

Happy birthday, Button.

A year ago, I thought that I would miss the sight of this unblemished belly, but I haven't.


I look at you, Button, and think of the wonderful things you have done for my KayTar.

Growth,

Development,

Nutrition,

Hydration,

Decrease in episodes,

Decrease in illnesses,

Fewer hospitalizations,

Fewer absences,

Freedom to discover food on her own terms,

And so much more.

Happy birthday, Button, we love you so.

You tell me...

This time last year, KayTar was approximately 29 pounds and 37 inches tall. She was wearing a size 3T and could still fit into many of her 2T clothes.



This time last year, we were in quarantine, preparing for a feeding tube placement.



Today, KayTar is approximately 35.4 pounds and 41.5 inches tall. She wears a size 5. In one year, she has gained almost 6.5 pounds and grown 4.5 inches. She went up two clothing sizes.





What do you think made the difference?

Wordless Wednesday: Pants

In case you didn't see it on Facebook or Hopeful Parents already, KayTar is now in SIZE 5 pants! She's gone from a 3T to a 5 since getting her g-button (it has been 9 months)! Have I mentioned that we love the tube? Because we really, really do.

The Great Big Medical Round-Up

Last week, KayTar saw a new geneticist. Our old one has moved away, following a job offer. This is the first specialist we've been forced into switching, though we've switched a couple (neurology/ophthalmology) for our own reasons. I was a bit nervous about the switch, but the appointment went very well. He had read KayTar's mammoth chart and was QUITE surprised to meet our bubbly, intelligent little girl after first seeing her on paper. Her last genetics appointment was over a year ago and her development has really taken off since then. It IS surprising! He ordered another chromosome microarray (the test has improved by leaps and bounds since her first one two years ago), and an acylcarnitine panel (for disorders where the body cannot properly breakdown fats). He fully expects the latter to be negative, but wants to rule it out definitively because her episodes seem to have a nutritional component. Unfortunately, this meant that KayTar had to have a needle stick, which she had been worrying about since she woke up. It went BADLY, poor kid, but we got the blood we needed and then got a special treat.

He also suggested, in a sidestepping not-exactly-my-area kind of way, that we bring her in for her next episode and attempt to get an MRI and EEG while she is in the throes of it. He said that some of these migraine variants cause observable changes in the brain that can be picked up on MRI, and the reason behind the EEG is self-explanatory. The pediatrician agreed, but said getting the MRI portion might be impossible, though we can try. The neurologist said that he doubts the MRI will show anything of value, but thinks the EEG is a good idea. So if her next episode falls between 8 and 5, Mon-Fri, I will take her in to the ER and see what we can get done. I hate the thought of it so much! I love the emergency department as a volunteer, but as a parent? IT SUCKS. The thought of bringing my writhing, vomiting, screaming, light-sensitive kid into a busy, bustling ER with insane wait times just fills me with dread. However, it has been nearly THREE YEARS since she has been evaluated for one of these, and they have evolved a lot since then. I think, in the long run, this will be worthwhile. I'm just not looking forward to it. The good news is that I'm making friends in the ER, so we might be able to get what we need a bit easier. Tonight I'm going to mention that we might be in as patients on Monday, so they will recognize me without my bright red vest, with any luck they can pull a few strings for their favorite volunteer.

Also, just in case this episode is NOT cooperative and falls outside of the 8-5, M-F hours, I spoke to her doctors about abortive medications (those that STOP migraine activity, rather than prevent it) so we can attempt to treat it. The last one was just so horrible, not even the Lortab could touch the pain...if they aren't going to stop happening on their own, I'd like to at least attempt to cut them short. 17.5 hours is too long, I don't want to know if they are going to get any longer. He's prescribing Imitrex 5mg nasal spray, if the first dose doesn't work, we can give a second in 20-30 minutes. I don't know how much luck we'll have giving her a nasal spray, but the other choice was a dissolving tablet and we have ZERO chance of giving her medications orally, so nasal spray seemed the way to go. The hope is that she tolerates the administration well and it is effective against these episodes. Either way, we're trying something new with this next episode, either testing in the hospital or testing out a new medication. Wish us luck!

Yesterday I received a call from the allergy clinic to remind us about KayTar's appointment next week (involving more needle sticks AND skin testing, she is going to be SO upset...my stomach is already flip-flopping over it) and to tell us NO MORE ANTIHISTAMINES until she is seen next week. I relayed the message to Josh, since we shift parent more than team parent these days. When I got home from math class last night (which I have a 101 in!) KayTar was coughing up a lung. OF COURSE. She hasn't had a cough or runny nose in weeks, MONTHS even. Now, as soon as we can't give her Benadryl, she is sick. We always treat her cough with Albuterol and Benadryl, to open the airways and dry up the drainage, now we can't! It is a throwback to the olden days, pre-tube, before we could medicate her properly. We'll survive, we did back then (though we treated her coughs/cold with cyproheptadine suppositories, a less effective antihistamine, back then). Hopefully, this summer cold is short-lived and doesn't escalate to the nightly vomiting-from-drainage level, and we won't miss our antihistamines too much.

She has some nonspecific inflammation around her g-button site, too. A couple of weeks ago, she had of folliculitis (staph) on her tushie again and it developed around her tube as well. We treated with mupirocin, both areas. Her tushie issue was resolved, but the g-button site never quite got all the way there. Last night it was noticeably more inflamed, but didn't have the little pustular areas associated with folliculitis this time. I sent photos to the pediatrician who recommended treating for yeast and watching it closely, so we'll see if this does the trick! If the red area grows or pustular areas develop, we will have to reevaluate. We have a vacation planned for this weekend, so I'm hoping that it won't be interrupted by episodes, illness, or skin-infection issues!

And the correct answer is...

"Kyla, just calm down and go with the flow already!"

TA DA! It was an easy one to figure out after all.

Yesterday, she ate at 11am, 3pm, 8pm, and 12am. This morning she had 4 ounces at 7am and 8 ounces at 11:20am. See? We're flowing. It will take a bit for it to solidify into somewhat of a normal routine, but as long as she is getting what she needs daily, the rest doesn't matter much. But you might be wondering, "Hey! Wasn't this whole tube thing just supposed to be supplemental anyway?"

You are correct! It was supposed to be supplemental! However, I think we underestimated just HOW MUCH KayTar dislikes eating and drinking. As much relief as we feel now that we know she is getting what she needs, I think it pales in comparison to the relief KayTar feels now that she is free from the work of eating and drinking.

The bottle has gone bye-bye. We weren't sure how it was going to happen, really. We didn't have a plan at all. In fact, the day we got home from the hospital, she asked for one and we gave it to her. She took a sip, handed it back and said, "NO!" And that was the last time she had a drink from the bottle. There was one day a week or so later where she caught sight of one and DEMANDED it, but I said, "Sorry, we're done with bottles!" and handed her a cup of Pediasure instead. She got mad and cried a little, then she rubbed her blanket on her face, calmed down and never asked for one again. She did not drink the Pediasure, though. We are offering sippy cups, open cups, straw cups...but she's not really into it, regardless of what they are filled with. She has a few sips per day and that is all really. Fair enough, kiddo.

As far as food goes, well, that hasn't changed much. Over the course of the day yesterday, she had two chicken nuggets, which was BY FAR the most food she's had in the 14 days since her surgery. She takes a bite of something when the desire for a bit of flavor overrides the general disdain for putting food into her mouth, I think. She might ask for a little bag of chips, but she takes one and leaves the rest. Or she says, "Mmmm! Nuggets! I love nuggets!" but she is perfectly happy only taking a little nibble from one. I'm going to go out on a limb and say, once again, that we made the right call with the tube business.

One day maybe, one glorious day, she'll decide eating is okay...she'll learn to enjoy it on her own terms. This tube will give her that freedom, we think. It separates the terrible chore from what might become enjoyment; a little of this flavor, a smidgen of that texture, the mouthwatering sensation from a delicious aroma. Most people don't understand this, I know. Some people might even think we've done her a disservice by separating the two, how will she ever eat on her own if she doesn't HAVE TO do it? But for KayTar, who somehow lacks the internal drive, the HAVE TO isn't a motivator, it never has been...we are hoping that one day, the WANT TO will take over.

Think about yourself for a moment, why do you eat? Sure, you eat because you feel hunger...but what do you choose to eat when you feel that hunger? Foods you ENJOY. If it was lunchtime and someone plopped some boiled bull testicles down in front of you, would you chow down or would you politely decline? This is how KayTar feels about eating, usually. We might as well be offering boiled testicles, rather than chicken and fries. But maybe, if you were really hungry, STARVING, you'd go ahead and eat...just to survive. But KayTar, she doesn't seem to feel that hunger, that starvation. The only way we knew she was having hypoglycemic spells was the dizziness. She never gave any other the indication. By the time my blood sugar dips so low that I'm dizzy, I am ravenous....not KayTar, though. The thought of food, getting it on her hands, letting it touch her lips, her tongue, her teeth...the thought of chewing and swallowing...it literally turns her stomach. She used to gag and vomit during almost every meal. We've come a long way from that, she is more assertive, she protects herself better, and she has even started to enjoy some things over time...but at the heart of it, she still feels that way about eating in general. It is an experience she prefers to avoid. And so our hope is this, that one day she might discover the joy of food, of eating...and after that, the nutrition will follow. In the meantime, though, we will continue to give her what we know she needs and we have no doubts that we've made the best decision possible for her.

PS: Sometimes when I discuss this stuff, I feel like I'm speaking a foreign language. Eating, the enjoyment and necessity of it, is so natural and ingrained for most of us that understanding how KayTar feels about all of it doesn't quite compute. We have industries built around humans and their great love of food, vast and varied cuisines, gastronomy even...our world revolves around mealtime. We have lunch breaks, family dinners. We go out to eat with others for companionship, for business. We invite people to our homes and cook for them, we have barbecues in the backyard. Holidays revolve around special meals, sitting around a large table and eating together. Food is a pillar in our culture. It is so contrary to think there are adults or children who don't adhere to these norms. When I talk about this, people often think more along the lines of picky preschooler asserting her independence, which makes the whole tube thing seem kind of insane. This is not that. I wrote this in hopes that is will make it all a little less difficult to understand from the outside.

Feeding disorders: When every meal is a scene from Fear Factor, but you never win $50,000.

Post-op Day 10.

KayTar is healing up wonderfully!

She is off the narcotics.

Her g-button site is looking great. No redness or inflammation.

She isn't experiencing any tenderness with her feeds.

Her biopsy bandage came off today and it is healing nicely. She's hardcore now, what with the belly piercing and wicked leg scar.

Chances are, she will be back in school next week!

She still has a touch of the death breath from the T&A surgery. It is a sad day when you think your kiddo has a dirty diaper, but alas, you realize it is just the smell of her not-so-sweet morning breath. Blech!

She still isn't taking much of anything by mouth, a few sips of fluid per day and today she had a Pringle or two, but she's still getting everything she needs.

All in all, the recovery has been so much easier than I feared. Outside of a few heartbreaking moments like waking up post-op and saying, "I'm broken." or drawing that crying self-portrait, we've both fared well. She's handled it all in typical KayTar-fashion, with smiles and giggles all along the way. I'm glad she's on the other side of it all and life can start to get back to normal around here...or our approximation of normal, at least, whatever that is!

The Easy Button

I did something amazing last night.

I fed KayTar and gave her medications, after she was asleep.

Yes, that's right. My child ate and took medication while she was sleeping.

It was amazing.

She hit the wall yesterday afternoon. Her body was pained and exhausted and it culminated in a mega-breakdown. She was a sobbing miserable mess, so I took her to the bed and cuddled with her for a while. She curled into me, great big fetus style, her little knees pushing against my stomach and her head nuzzled in my chest, a ball of preschooler. She stayed there, still and quiet for a very long time. My poor little girl. I was almost certain I would be missing class again, staying home to lend her the comfort she so obviously needed in that moment, but she perked up in the nick of time. She told me I could go to school, Daddy would take care of her. She still wasn't her best and I decided to skip the lab portion of class, so I could get back to her quickly.

I got home around 7:30 and she was already asleep. Her little body was just worn out. Healing is hard work. We had a small problem, though, she needed her nightly dose of antibiotics and she hadn't "eaten" or had pain medication since around 3pm. Though we were concerned about waking her accidentally, we didn't want her to go without her medicine. We decided to give it a shot, at least try to give her the medications.

I gathered the supplies and sneaked in the bedroom.

I opened her port. Froze. Looked at her, motionless.

I hooked up the bolus tube. Froze. Looked at her. Still motionless.

I ran in her medications. Lortab, Amoxicillin, Miralax and water. She slept.

I shout-whispered to Josh, "Bring me a Pediasure!"

I ran in 2 ounces. She slept.

I waited a bit.

I ran in 2 ounces. She slept.

I flushed the line.

I disconnected the line. Froze. Watched her. Still sleeping.

I closed her port.

I zipped her footsie pajamas.

I kissed her head.

I sneaked back out.

Medication and nutrition in her sleep. Wow.

We discussed these things before the surgery. We made the decision to get the button for these very reasons; the ability to feed her when she felt too poorly to feed herself, the ability to keep her hydrated, the ability to be able to give her nutrition and fluids and medication while she slept...we discussed all of it. Though, somehow putting it into practice feels like an unexpected gift, each and every time. It had only been a week and already, it has done so much for her and for us.

[Would have been] Wordless Wednesday: The Blue Plate Special
It's what for breakfast...and lunch...and dinner...and midnight snack.

HerTube

More of the same...

Last night went well, KayTar and I enjoyed a lovely full night of sleep in my big comfy bed. Josh will be bunking in KayTar's flowery twin bed for the next little while, but he slept fine, except for the recurrent dreams of butterflies and fairies. She woke me up a few times, I'd hear her say, "Mom!" or "Dad!" and open my eyes to find her sitting upright in bed with her eyes completely closed. She'd say something like "Where am I? I can't see ANYFING!" And I'd reach over and say, "Remember? We're home now, let's lay down and sleep." Oh, the fun of preschoolers on narcotics.

This morning, BubTar went to school and was promptly returned home to me. Without giving too much away, he is having serious intestinal troubles that began as a bit of a SURPRISE for him. I'm a little bit freaked out that he's brought home some GI virus that he will see fit to share with the rest of us, especially KayTar. Can you imagine her getting the pukes with the state of her stomach and throat? Let's not think too much about that. Needless to say, quarantine is back in swing, sponsored by Lysol and Purell.

The perkiness of last night has worn off, I think it was a Lortab buzz combined with the rush of being pain-free for the first time in hours. She's in good spirits, but much more mellow than she was last night. She's tolerating her full feeds and every time it gets a little less painful (her site is still pretty tender). Last night she got upset when I was hooking her up and she jerked the bolus tube off. YEEOW! She doesn't seem to want to repeat that experience and is less apt to grab at things, even if she is still a little uncomfortable. As long as I give her hands a little squeeze after every step, ("Okay, I'm going to open your valve now" Squeeze hand. "I'm going to hook in the tube now." Squeeze hand.") she is mostly agreeable. During her pseudo-lunch, she even wanted to help hold the big bolus syringe. She is also quite fond of using the bolus tube as a microphone to announce important things like, "I like flowers and hearts!". She whimpers a little when I tell her it time to eat, because of the tenderness, but it will get easier and easier as it heals. She's adjusting really well, all things considered.

We're home.

Oh, yes we are.

Today was a longish sort of day and I'm feeling that rush of exhaustion that stems from finally being able to relax a little.

This morning she had her first Pediasure feed via the tube. Most of you already know that she calls it "chocolate milk". Well, when I asked her how it felt going into her tummy she said, "Too chocolatey." She makes me laugh.

A lurky local blog reader (Hi there!) emailed me this morning to see if she could bring KayTar a little get well gift. She left it at the nurses station and they delivered it to KayTar. She was THRILLED! It was such a thoughtful and sweet gesture! I don't know if she wants me to give her name or not, so I won't...but everyone tell her how KIND she is, because I'm sure she'll see this! Check it out...





A homemade tutu and wand! She was in heaven. She wore it all day long. She spent most of the day out of her bed. We went on walks around the floor, she played in our mega-room, and we even took a wagon ride to the cafeteria so I could eat lunch. The tutu got rave reviews all around. She also did a craft today, see her pretty bracelet?



This afternoon, the nurses trained me on tube usage and I fed her for the first time. It was still a little painful, but not too bad. After every 2 ounces, I asked her if her tummy was full or if she wanted more. After 2 ounces, she wanted more. After 4 ounces, she wanted more. After 6 ounces, her eyes closed and she was snoring away. A nice full bellied nap. After that, we were free to go! By the time we got home she was hurting pretty badly, because she hadn't had pain medication since morning. She was running a little fever and was generally miserable. Once we got her codeine laced tylenol into her little body and chased it with some Pediasure, she perked up, though. She's currently wandering around the living room, watching Blue's Clues in her fairy pajamas with her tutu on over them. Perky as ever. It is a beautiful thing.



Today she has probably had 5 sips of fluid total, but she's gotten almost all of her fluid, calories, and medications for the day already. By the time she goes to sleep tonight, she will have had everything she needs. And that, too, is a beautiful thing.

The new belly.

She had her first feeds today, clear fluids only. The first one was fairly traumatic, the drainage tube had fused to her tummy and removing it was very unpleasant. Once that was over, hooking in the feeding tube was not as problem and she didn't mind the feeds at all. Though, she looks less than thrilled in the photo...



My parents came to visit, which mostly consisted of sitting and staring at her while she stared at her Tinkerbell movie. After that crazy exhaustion inducing exercise, she took a really long nap and when she woke up, she SAT UP! Then I asked if she wanted to stand, she did! Then I asked if she wanted to take a walk in the hall and SHE DID! We looped the floor twice before she crumpled back into her bed. She still hasn't moved much. That is hard work for a tired, pained little body. After crawling back in bed, she watched more Tinkerbell. Surprise.



After Tinkerbell time, Josh and BubTar came to visit. BubTar and I went to dinner together and Josh and KayTar bonded...by watching Tinkerbell. When we got back from dinner, the radio show people were there dropping of the goodies for the nightly craft contest, a blank watch and stickers. She decorated hers with stars and fish stickers, with a little help from her brother.



They also dropped off a letter from our friends, Kristin, Easton, and Dalton! I had her pose with it, but she couldn't quite smile...



The boys stayed long enough for me to shower (THANK GOD FOR SHOWERS) and then they went on their merry way. While I was in the shower, though, KayTar broke her Tinkerbell DVD. I fear for our survival without it. EEEK! My sister might have mercy on me and bring us a replacement tomorrow. I think "Watch Tinkerbell" is actually written her post-op orders...or at least it should be.

Later on, the radio people came back to award KayTar her prize for winning the craft contest, a Barbie. Her very first. She was thrilled and has been brushing its hair for about an hour now. Simple joys. Consequently, she won the art contest last year when she was here for her EEG, too. I wonder if they stack the odds for adorable little Tars.



Tomorrow, she'll start Pediasure feeds in her tube. She's only had three sips of fluid since 9:30pm on November 3rd and she still doesn't want anything to do with eating or drinking orally...and for the first time in her little life, I DON'T CARE! Honestly! She can be fully hydrated and nourished whether she feels up to drinking or not. A miracle in the form of a little plastic button. Amazing.

[Insert long, heartfelt sigh of relief]

Wordless Wednesday: Unblemished Belly

(1 of 2342874590348576 similar photos)

Here we go...

The surgery is scheduled for October 14th.

(I feel a wee bit dizzy.)

Yes, that is next week.

(when I told BubTar, he said, "So, I get a little bit of free time here without KayTar?!" Brotherly love, how it melts my heart! )

NEXT WEEK!

(why do I suddenly want to take millions of photos of her little unblemished belly?)

Goodbye, tonsils and adenoids. Hello, g-button.

(and also? EEEEEEEEEEEK!)

That is all.

(no really, that is all.)

Change of plan, surgery will actually be on November 4th.