6 years, 7 months old | Will the warfarin bite the dust?!?

So before I delve into our last appointment I thought I’d start out with a bit about how recovery has been the past few months. Everly has a remarkable memory for things that hurt or don’t go as she plans – and although many of her non-surgical procedures were sedated, there were a couple that she remembers and they traumatized her and continued to haunt her memories and taint her normally sunny demeanour. She healed perfectly physically – scars are fading, ribs only hurt for a couple of weeks, back to playing like normal. But she had a couple of months of crying at random times daily and nightly (not nightmares thank heavens) but she couldn’t explain why she was crying. She occasionally would say it was because of her neck (the IV and stitches that were taken out with no sedation that hurt her very much). And she was losing her temper quickly and would display awful fits and throw things, pound her fists and scream – she wanted me to leave her alone during these times, and it was totally out of character for her and was hard to see. Luckily though, she slowly crawled out from under it and is back to herself now. The only things different after the Fontan at this point are her warmer hands and feet, and her pinker nose and lips!

1. Everly did a private, socially distanced Christmas concert for us, it was awesome! 2. Her talking ‘Kangy’ was her favourite Christmas present. 3. Santa with her beard. 4. Mulan’s matchmaker costume. 5. First snowman of the season. 6. Mulan’s warrior costume with the sword Grandpa made.

On to her appointment:

This past Thursday Everly had her second cardiology follow up appointment with Dr. Hornberger in Edmonton. We were the first appointment of the day at a dark and cold 7:45am. That meant we needed to stay the previous night in a hotel and Everly was so excited for that! She’s always looking forward to flipping through the ‘bible book’ the hotels sometimes supply, and it’s always a little treasure hunt looking for that – books have always been by far one of Everly’s favourite toys 😊 It wasn’t ideal to need to travel the three hours to Edmonton in the consistently -40 windchill, and my car battery died the day before we left – which was a luckily timed misfortune, so we changed plans and took my moms car and it was smooth sailing with no one losing any fingers or noses to the cold.

All of Wednesday I was consistently preparing Everly for the ECG that she hates (her last appointment she had an unreasonable crisis for that test). I always tell her the better she cooperates, the faster it goes – which is always true in these sort of cardiology tests. I tell her I will take the stickers off slowly and carefully, that they have to stay on longer if she’s fussing too much, to take deep breaths and listen to my voice. And she appeases me and fools herself into thinking that will all work. So by the time we finished getting her weighed and measured at Thursday’s appointment (28 pounds, 36.77 inches) she was voicing loudly how she was excited for the ECG, that she was so brave – all a quite false bravado lol! She knows that is always the first test, but when we went to the echo first she was elated! She gets to watch a movie for that test (and talk the tech’s ear off), so she’s come to like her echos. This time the technician taught Everly a bit of what she was seeing on the screen and she was pretty interested in that. Everly had also mentioned that she hates her ECG test and the tech told her that she could ask if she HAD to have one – well that was it for Everly, she was SURE she wasn’t getting one…and she didn’t!!!! Dr. Hornberger asked her if she’d rather get one that day, or one FOR SURE in six months. My girl lives in the moment and had not a second of hesitation in saying, “NEXT TIME!” hahaha!

Dr. Hornberger is always so happy to see Everly, and when she noticed Everly had brought her Mulan doll she started singing 🎶Let’s get down to business, to defeat the Huns🎶 And Everly instantly threw her palm to her forehead like she was embarrassed to death haha! Dr. Hornberger knows Everly’s sense of humour goes that way sometimes and we all laughed and joked about the teenager I’m going to have to deal with someday.

She told us that the echo showed that Everly’s fenestration (the tiny ‘pop off valve’ in her Fontan) was closed – which is what we were waiting for to stop warfarin. And she said we would do three more months of warfarin and stop it in April – um, no that wasn’t our plan…so I said that Kid Clot was waiting for that cardiology appointment for the go ahead to stop. So she called them right then and they decided she could be done warfarin and back to aspirin instead. I couldn’t give them that INR meter back fast enough – no more finger pokes, phew! Her daily meds at this point are synthroid, enalapril and aspirin – a pretty small line up for our heart girl 😊

And Dr. Hornberger is enthusiastically happy with Everly’s recovery both inside and out. So Everly and I both would call that appointment one of our best ones to date 😊

1. A break during the echo where she watched The Lion King. 2. Giving Mulan a checkup.

6 years, 4 months old | I don’t know if you heard…

…me yelling from my car as we drove into town, but EDGERTON WE ARE HOME!!

Everly was so excited to drive over our last hill into town tonight, to get home and say hi to all her stuffies, books and toys, to introduce her new dolls to her old ones, she actually cuddled with one of her favorite books that she had been missing. It’s so nice to be back in our cozy house and our own beds.

Everly’s discharge day was over and she was excited, but she had a couple follow up days with Kid Clot that challenged her. Thursday we intended to do the hard part and be done, but it took a different turn. After her dreaded finger poke, her INR on my machine came out to 1.3, and needs 1.5 for the validation tests. So I had to take a prescription for Tinzaparin downstairs at the Stollery and get a whole vial of it for one more dose. Good thing we have a health plan or that would’ve been close to a $100 single shot. And because she only needed the one additional shot, I was spared from giving it to her and the doctor did it instead, phew. So one finger poke, and one needle on Thursday – both bringing fits of tears.

Today we went back to Kid Clot with all my fingers crossed for a 1.5 INR, and my meter was 1.8, the other meter was 1.9 so we then needed the blood test to validate everything. Everly was in denial of what a blood test was until we got to the lab and took a number, then she cried from there on. And the only thing taking her mind off it a bit were pictures on my phone, and it lasted a whole ten minutes before dying, gee whiz! When we finally got into a room, she cranked it up a notch, and with two nurses and me holding her still the blood was drawn in only five seconds in seemed. Then she broke loose and kicked and screamed and kept saying she wanted to throw something. I’ve learned to stay quiet when she’s like that or I just make her madder, so I just held her poke spot tight (no bandaids or tape permitted) and let her yell it out. The lady across from us must’ve wondered how this tiny girl had so much anger, but Everly had cooled down before she left and she gave us a nice wave goodbye – and likely got a mean glare from a masked Everly, those eyes can say it all haha!

My amazing girl was back to herself before we got to the elevator though, and she always tells me that she knows it’s not my fault, and she loves me (swoons my heart). But added this time, in such a matter of fact way, that she just wanted to throw something. And she was so pooped out from her morning that I had to carry her all the way through the hospital to the car where she fell right asleep.

So back at the Ronald McDonald House we packed up and went to check out, and we were taken to the Magic Room – oh my gosh, it’s filled with toys! Everly was tickled pink in there, and of course it’s so hard to choose – so she chose the biggest thing in there, a Rapunzel princess castle. She truly deserves all the prizes she got during this admission, but yowza she got allot of stuff!

And as soon as we were in the car and on the road home, she was sleeping again in ten minutes.

Now she’s asleep for the night in her own bed, after our normal bedtime routine, comfy and content. I hope she has a restful sleep and can let these last three weeks melt away with each day.

6 years, 4 months old | We’re out!

Today was discharge day!!!

We made our triumphant way out of the hospital at about 4:30pm. Everly donned her mask and hauled her pink owl suitcase all the way to the parkade, waving and saying bye to everyone she passed by.

Today was no easy peasy discharge day – I had to finger poke her in the morning, and she still hates that. Her INR came out to 1.1, so we couldn’t take the blood test from her IJ that was still in her neck because her INR needed to be 1.5 for that. And because her number was so low (supposed to be 2.0-3.0) she needed a ‘bridge’ dose of Tinzaparin, which is a needle. Not good.

Then she had a bit of a break before her IJ in her neck was removed, and THAT was quite a production. First the mass of tape needed to be removed, then the stitches holding it in needed snipped and taken out. It took so long I experienced a range of emotions. From sympathy, to frustration, to exasperation, to sadness and madness. Everly experienced only terror and anger. She banished everyone out of the room when it was done, and told us to leave her alone already!! Luckily she once again forgave me, but it took a couple minutes. She even forgave Dr. Scott later too.

After that she had a little break again, and the flu shot came for her. It went better than expected, better than her finger pokes actually. Now she’s slaying the flu dragon we saw on a poster at the Stollery.

And as if the IJ removal wasn’t terrorizing enough, her pressure bandage was falling off, so it had to be taken off and replaced. Much to her surprise, she didn’t cry! She actually said it wasn’t too bad.

And after a few nurse and doctor chats we were finally let out. We will follow up with our cardiologist in 3 weeks, our pediatrician in 1-2 weeks, and Kid Clot tomorrow. And at Kid Clot tomorrow she will get two finger pokes into two different machines to make sure ours is accurate (they almost always are), then if her INR is over 1.5 she will get a blood test at the lab to make sure everything is the same. Should be a fun day 😬 and if she’s not over 1.5 we will likely repeat all of that on Friday too…

So we are staying two more nights at the Ronald McDonald House, then home just in time for a Covid friendly Halloween (maybe 2 houses and hanging out at grandmas). And I remember when she had her Glenn at six months old we were home just in time for Christmas.

P.S. I feel like a silly billy because I totally forgot to take any pictures today except the one below 🙄

Speeding away from 4C!

6 years, 4 months old | A couple steps toward normalcy

It was a big day for Everly today. At rounds it was decided to stop her Lasix, restart her enalapril, take out her NG tube, and continues feeds as yesterday in order to go home tomorrow! She also got another Beach appointment this morning, and she has so much fun in there.

Her Beach time in the morning.

She had her tube out early in the day, then early afternoon her heparin was stopped because we had met with Kid Clot and decided on a blood thinner. It was discussed with our cardiologist and the cardiologist from rounds and warfarin was chosen for three months, then back to aspirin.

The anticoagulant choice was not great for me, but exciting at the same time. Warfarin requires the use of a CuaguChek Lancing device, but being able to go back to aspirin sounds like it’s a semi-rare possibility for Fontan kids. Dr. Hornberger came by and explained that Everly gets that option because her conduit fenestration was so small and seems to be closed over already.

Just a side note: Everly’s oxygen saturations sit at 96% average so I’d say I won the bet between Shawn and I in the PCICU with my guess of mid-high 90’s 😉

But even only needing warfarin for three months, we still needed to learn all about it. My mom ended up being let back in as a second visitor just after lunch (phew), so she got to learn with me. We watched five short videos online, and did a quiz after each (I only got 1 answer wrong) then a Kid Clot teacher came and showed us the IRN testing procedure with the machine, the strips, and the lancing pen. After we learned she asked if I wanted to try it on myself, and I totally see where Everly gets a touch of her needle phobia from – I was so nervous! I had to get my mom to shoot me with the pen while I looked away haha! And true to the teaching, I didn’t feel it at all, like a mosquito bite. So next was Everly’s turn and I was a bit shaky knowing she wouldn’t take it well, but I poked her properly and she bled really easily onto the test strip, but she cried and told me it was the worst pain she’s had in hospital. I knew that wasn’t true, but in her head every hurt is the same I suppose. She knows it needs to happen at home too, so I hope she gets better at it. Luckily it should only be every few days to begin with, then reduced to bi-weekly or monthly. We may need to get lab blood tests once in a while too, and she’s not likely going to get used to those…

Everly did great with her formula again today, easily drinking the required 500ml in three divided portions for breakfast, lunch and supper. I need to set a 15 second timer on my phone for her to take sips, but it makes her done in just over half an hour, so it’s working for the moment.

So the afternoon was freeing for us. After Everly’s first dose of warfarin, the IV heparin was turned off, which left her with no more hookups other than her monitoring wires! So we went for walks with ease, she walked further away from me than she has in weeks, she ran, and she sat on my bed and looked out the window. We chatted with the gardener in the Healing Garden (who’s name is Charlene) and she told Everly she would take a picture of the flower she plants in an empty pot that Everly had noticed and show her when we see her next. They have a cute relationship with each other 😊

The NG tube is out! Her first moments of freedom outside our room, and we forgot her mask! Sprawled out on my bed. And cup drinking time.

6 years, 4 months old | Formula, Strikes and Covid, oh my!

This morning at rounds it was decided to decrease Everly’s Lasix to once a day, remove her wrist IV, and increase her formula intake from 240ml in a day to 500ml – which is what she takes at home. That’s a big increase for a day and I was worried it wouldn’t fit in her tummy, so I asked for her NG tube to stay in one more day just in case she needed it. They also stopped the nutrition (TPN) she was getting through IV in hopes she would feel more hunger.

Her wrist IV was taken out in the late morning to many cries and screams because of the tape. Then she requested alone time to cool down, but I needed to hold the dressing on the site for ten minutes because she refuses bandaids. She was not happy.

We started on 100ml cups every couple hours this morning and I was sure Everly would have a problem with the volume and puke. But although she moaned and groaned through a couple of them, and was happy enough for others – she managed to squeeze it all in!!! Her tummy got big, she used the potty, and her tummy would shrink a bit, then back up and up, then down a little – I’m measuring with a paper tape measure in the morning and after each meal just for my own little experiment.

Relaxing and comfy drinking her last 100ml of the day.

At lunch time I decided to go down and get something for me and my mom, but to my confusion, all the cafeterias were closed. I came back upstairs to find that the workers had gone on strike, we could see and hear them out our window. So my mom decided to go across the street to the Subway and it took her over half an hour to get through the line to get in. She was seeing lots of people getting turned away, and everyone was confused. Luckily she got in because she has a card for a Pediatric ward, but our neighbor has been having trouble getting in because his wife was here already. He was told that tomorrow there will be only one parent for each child allowed in our unit.

So I was pretty quickly out asking our nurse what was up, and they hadn’t heard anything like that themselves yet. They expect management will maybe make an announcement tomorrow about one visitor and that it would be because of the crazy increase in Covid cases in Edmonton, not the strike. That’s not ideal for us because I hardly ever leave Everly alone and with the cafeterias closed I’ll be eating out of vending machines here. My mom helps me in all kinds of ways and it’ll be tough without her, our days will definitely feel longer. We’re hoping she might be able to bring me some things like clothes and food, I guess we’ll find out tomorrow.

At least we can plan to be out in possibly three days if these feeds keep going well and the chyle issue can be ruled out. Everly’s tummy distension is an issue we can work with at home and manage in future with our awesome pediatrician. Then we’ll just have the anticoagulant to work out before we leave.

6 years, 4 months old | A Short Sunday Update

Today was another quiet day. She was shrunk back down to her normal by morning and the doctor thought she had a soft, nice tummy. I showed him the before and after pics from the night before and he was amazed how she looked this morning.

We increased her feeds from 150ml total pediasure by mouth to 240ml. We’re keeping to normal meal times and she gets her new med before every one, and I THINK it might be working. I don’t want to count my chickens before they hatch, but I don’t think she was as distended today as yesterday. Still no poops though, but more gas has come out lately. I’m going to see about starting Restoralax tomorrow because she’s normally on it regularly at home.

When she woke up this morning I noticed she had lost her first tooth! She didn’t even notice it was gone. I felt around on her bed and found part of it, it must’ve broken in half I think. She’s pretty excited for the tooth fairy tonight!

First lost tooth! And some chocolate moustache face tape haha!

She was happy most of the day today, and we went for more walks on floors 4 and 5. She brought her Cat in the Hat stuffy today to show him around. She did some colouring and we played some games, I napped, she watched movies – just a lazy day.

She had her first bath in 4C tonight with some nurse guidance to make sure nothing got wet that wasn’t supposed to. That was nice to have done and she liked it.

6 years, 4 months old | The Battle of the Gas slowly improves

Everly was moaning and moving in her sleep last night around midnight so I got the puke bucket ready just in case. I asked her if she needed the potty and she did, so I quickly unhooked her and off we went. And much to my surprise she had a thunder roll of farts! Her tummy had been so distended after the 100ml of formula, but still soft at bedtime. But by 11pm her tummy got rock hard. I was so happy she let all that gas out, we had a mini midnight party! Her tummy was instantly soft again. I can’t believe I can be so proud of some good farts, but I really am!! And in the morning her tummy was back to her almost normal size. 

Her tummy at night vs in the morning. Shocking, I know. No more tummy tape either, she’s pretty proud of that!

I’m sorry if all this poop talk has been a bit of too much information. I don’t realize it when I’m hearing about it so casually with doctors that it might be on the yucky side for other people. I’m sure Everly might have some words for me when she reads these posts in the future too hahaha 😆 

Today we tested Everly’s tummy with 3 cups of 50ml each throughout today with what I would call success. She’s still getting quite distended, but is comfortable and passing occasional gas and tiny turds in the potty. The nurse pulled quite a bit of gas from her NG tube after her lunch cup. I’m not sure how to prevent that when she’s not using a straw, but I’ll be asking Dr. Silverman next week about that. 

The domperidone medicine was started today and she got two doses through the day. It’s meant to be taken before each meal, so three times a day and will hopefully help the stomach let the formula down more readily. It might take a couple doses to start working so I’m hoping to see some evidence tomorrow. 

She is still getting Lasix for fluid retention, and TPN for her nutrition through IV. She continues to get IV heparin for blood thinning too, although Kid Clot came by yesterday to start thinking of an alternative to take home with us – either warfarin or tinzaparin likely. Warfarin requires finger poke blood tests and tinzaparin is a daily needle, so neither are looking good to me with our extremely needle phobic Nugget. 

Overall it was a pretty easy Saturday. I actually went to a store for the first time in over a week, I needed mitts because I didn’t pack for winter thinking we’d be home before the cold came. We went for a few walks, even up one level in the elevator for some different views. Everly was quite happy today with nothing to hurt her, but she doesn’t like the taste of her new medicine.

And as I was typing she went to the potty and had another fireworks of farts, I told her it was like my Christmas morning! She was laughing like crazy 😆

6 years, 4 months old | A couple of small steps in the right direction

After rounds this morning it was decided to have the bum tube taken out. Dr. Silverman came in and apologized for jumping to a conclusion on Ogilvie Syndrome by only seeing her post surgery X-rays. He said he saw some older ones from before that showed a similar issue. So it’s obviously been going on chronically and Everly has been comfortable with it. It would be nice to figure it out though, maybe she could be even more comfy if her tummy wasn’t always so big. 

Dr. Silverman also mentioned a drug called Domperidone that could allow her tummy to empty faster and would be taken before every meal. That sounds okay to me to try. I need something to work.

The plan today was to try pediasure as usual and see how her body reacts to it. So we’ve done two 50ml amounts through the day over a couple hours each, she wasn’t so keen on having to have her formula again. So back to timers for drinks – not ideal. The other thing is to get her to walk more. So once her tube was out we took a couple of walks to the Healing Garden. She likes to show us the plants and make up names for them.

She had some tape and bandages removed today two different times, so she’s pretty angry after that and needs some cool down time, so that cut into walking time. But she earned yet another prize from Child Life – a little LEGO kit. And her chest is now completely bandage free and she’s pretty proud of that!

Tomorrow’s plan is to have three different 50ml amounts through the day. But if her tummy hasn’t shrunk down and we don’t get a good poop soon, then I’m not sure I’ll go along with that plan. It’s still a daily experiment it seems. I can’t wait for it to be over.

Our walks have quite a bit of tag along equipment, but she’s happy to be getting out and about regardless.

6 years, 4 months old | The gas has not escaped

Everly had a good sleep last night until 5:30am and she had to pee. A quick discussion was had about how to do that without the tube falling out. No plan had been figured out in the day because she hadn’t needed to go. A nurse with fifteen years experience had never seen this in a kid, so we were a bit stumped and tried a bedpan, but Everly couldn’t manage to pee in it. Then we noticed the tube is all the way out and laying on the bed. Nuts! Everly didn’t notice when it fell out, but it was easier to take her to pee after that – the tube was left out for the rest of the night. I was disappointed because I had high hopes again that this might work, it happens with everything we try it seems, and nothing has worked so far.

In the morning Everly was still quite puffy looking in her eyes, and her weight hadn’t changed since her gain yesterday with fluid. The Lasix was left on to hopefully help there.

In the morning Everly was finally excited to go for a walk with her new prize – a Mulan stick (a sparkly wand thing). So she swung it around like a weapon as we walked to the Healing Garden. She was much happier to be there today than in the past, she looked closely at lots of the plants. At one spot she noticed a shovel beside a hole in the garden and we were hypothesizing about what might be going in there and that we should check back later. But by the time we were getting ready to leave the gardener was starting to plant a flower there. So Everly asked her what she was planting (a heart flower) and we sat and watched and learned a few things. The gardener said Everly made her day 😊 and Everly was so happy to sit patiently and watch her do her planting. We planned to take another walk later and see how it looked or if it grew, but the docs had other plans.

At around 11am another dose of Ativan was given for another bum tube insertion (butt tube is what Everly calls it haha). The Ativan didn’t work as good this time, and after the tube went in with some screaming, the nurse thought she’d try changing her neck dressing with the med still in affect. I told the nurse it wouldn’t go well, and by the end of it she said she didn’t expect that! We had two nurses, one child life rep, and me holding Everly down and she was still flailing her arms somehow. I hate having to hold her down like that while she screams and cry’s, it feels like such a betrayal to her. I’m so lucky she forgives me every time and usually makes sure she tells me she knows it’s not my fault – swoon. Child life gave her a pretty nice toy after seeing her go through that.

In the afternoon the doctors decided to try some pediasure to see if it would stimulate her guts to start moving, but it seems to have distended her more. She only had 50ml over 2 hours by mouth (unwillingly of course 🙄) but it doesn’t seem to have gone through at all. An X-ray was done after the formula and it shows all the gas still the same and the tube had been in maybe six hours by then. It’s tricky to get the gas that’s trapped up high if it isn’t moving down at all.

Everly was happy all afternoon anyway, she has no trouble sitting up with the tube in so she was drawing and colouring and playing with her new Disney doll houses from Child Life. Having a pee with the tube in is quite a production to make sure it doesn’t come out, but the nurses are getting pretty good at it.

So the vague plan is to see what the morning brings with the distension and decide if they should try a gut motility drug with a side affect of a lower heart rate – not ideal, and may require closer monitoring. I’m honestly not sure of the plan from hour to hour, it seems a bit like we’re winging it. But I’m sure there are some educated plans behind the scenes, we just don’t see much of the gut doctors and hear from them through our cardiologists. I hope something becomes clearer soon and we can get moving on something that will definitely work.

Bottom right is her watching the gardener with such interest.

She loved the blue color of that water and wanted her picture with it 💕

6 years, 4 months old | The distension battle takes on another foe

Last night Everly slept solid all night, and I think I slept one of my best sleeps too (still not great). I had noticed at bedtime that Everly’s eyes looked a little puffy, and so did the rest of her face. Her tummy seemed a bit more descended than usual too, so I made sure to tell the nurse to ask the cardiologist about it and we went to sleep. It was assumed that it was a post biopsy thing affecting her. In the morning a cardiologist (Scott) came by to check on us before rounds. He had his mask on when I told him Everly was puffy, then I mentioned a little nasal congestion she had this morning and he ran for some gloves and rattled off a bunch of Covid symptom questions. Luckily he ruled out Covid and she didn’t get tested, but he said her lungs sounded good so it wasn’t a build up there since the chest tubes had just come out. When she was weighed this morning she had gained a whole kilogram, so at rounds it was decided to start her on Lasix again until the puffiness subsided.

At 9:30 this morning Everly had an appointment at the beach (a play place for kids). She has never been there before and thought it was awesome! The inactivity we have been experiencing with her was erased and I could hardly keep up with her with her IV stand!

So much fun at The Beach – much needed!

Later in the morning Dr. Lin and Scott came by to let me know what the gastrointestinal team had told them. Dr. Silverman thought Everly might have Ogilvie Syndrome, which can happen after surgery it seems. His suggestion was a rectal tube to be placed for 24 hours to hopefully drain all of the gas from her tummy and shrink the distension. The problem was that the nurses today had never done it before, and there was no rectal drain meant for little kids because it’s usually done in grown ups. All they had around here were irrigation tubes that aren’t to be left in for any period of time. So the search was on trying to find one that was small enough for our Nugget’s tiny body.

When a tube was found I got really worried that it was too big and would be hanging down to her feet after it was put in. Dr. Lewis came by with the same concerns, and said she had to go educated herself on the syndrome because in her 30 years of practice she’d never heard of it or putting a drain in a kid for that long. So after the patient nurses settled my mind on the procedure, how far it went in and how to tell when to stop, how it would stay in, etc – they gave Everly some Ativan to help her calm down (I could’ve used some too), and half an hour later three nurses came in and gave it their best. And it worked! Everly was pretty loopy on the med she was given, but still had enough in her to fight them and scream. But once it was in she was only uncomfortable for a few minutes before feeling okay with it. Not long after the tube was in one nurse opened the vent on the bag at the end of the drain to let the gas out and the smell knocked her back a couple steps, just like the surgeon had said that when it sits so long it can do that haha! One of the other nurses rigged up a rectal tube for Everly’s Mulan doll and Everly put it in after hers was done – such a nice thing to do for her. When it was all said and done Everly was still feeling the med she took, and everyone just laughed at all the funny things she was doing and saying until the drug wore off, and even after that she was still happy and witty and smiling. That surprised me for sure!

Dr. Silverman came by later and told Everly she can blame him for her discomfort, and she was cracking him up before long too. He hopes that 24 hours with the tube will be enough to fix the syndrome, and an X-ray will be done tomorrow to see. The second option is 24 more hours with the rectal tube, third is to try meds, then fourth is to do a colonoscopy to determine what’s going on in there. After it’s fixed the syndrome shouldn’t come back and we can discuss her regular distension (that she gets with her cups at home) in the future as an outpatient. He said he sees these kinds of issues in kids that have fluid diets because they take in too much air when drinking. And that we should try no straws and no talking when drinking – good luck to us 😕

At one point today we had Dr. Silverman, Dr. Bratu (the general surgeon that did the biopsy), and Dr. Lewis in here at the same time. That was nice because everyone ended up on the same page regarding the ideas of Dr. Silverman.

Tonight Everly has relaxed with her tube and is sleeping easy. She told me this morning that she was thinking of a Daniel Tiger song “Let’s play the game, find out what’s different and what’s the same” and when he’s away he finds things that are the same to comfort him. So Everly decided that her water could be the same as at home, and she doesn’t beg for it at home so won’t here either. And she sleeps good at home, so she will here to. And that movies are the same too of course haha! She was true to her statement and she’s been in a great mood today that we’re so thankful for.

Drawing pictures, and Mulan with her rectal tube 😆