relaxing

Billy and I got some much-needed r&r on Bowen Island Friday night. We went away to a cabin and it felt like we were gone much longer than 24 hrs! So refreshing. We're going to get away for one week before school starts and that will be really great too. We had a great day at the beach today (Spanish Banks) and J.J. is still running around and "beating us" when we go places. It's astounding, really! Here's the highlights of his day today-eating and playing beach volleyball! Jackie tried to "surf" on a boogie board and built sand castles.

It seems to me that J.J. is less grumpy and generally a happier kid since having his surgery. He must be feeling so much better.

roller coaster rides and running

I know it's been a while now, I keep meaning to update you guys. J.J. is doing so well. He's just flying along. I'm definitely exhausted and still trying to keep up with meds and appts etc. And, it seems like in some ways we're only now beginning to emotionally/mentally process some of what we went through this summer. But to look at J.J., you'd never know anything happened to him! Unless of course to notice that he seems to have more energy than he has ever had. To walk anywhere we usually have to drag him kicking and screaming but he has been actually challenging us to races and running at least 1/2 of the time!! Like I have previously mentioned, he has a much rosier colour than before and he's really looking good. We went to the PNE on Saturday and he rode on the kid's rollercoaster. On Fri. night we went to the BC Lions game and he even got to go down to the field before the game and for kick off. The boys are also thrilled with the BC Lions hats our friend picked up for them.

Thanks again to all of you, for following our adventure, for praying for us, for feeding us, donating to us, giving us presents and care packages, for your friendship.... we have appreciated all of your support in the different ways you have all given to us. I'll keep updating this for a while longer, but soon enough it's going to be more about what we're having for supper and less interesting to all of you!

Oh we did go into Children's today to test J.J.'s INR (blood thinner levels). We did a finger poke today (a few new routines for us to learn in terms of pre-registering and who to book appts with etc). It seemed less traumatic than the venous poke in the arm although he keeps insisting that is the way we should do it! His speech is coming along too, it has improved a lot over the last week or so. He's in good spirits, joking around, being mischievous and loving to drive us all crazy!

pharmacy headaches

I was disappointed to find out that apparently the amount of Iron we've been giving J.J. has been almost negligable. It's a shame for his health and his hassle of taking it since what he's actually been given (with the Ca/Mg which greatly reduces absorption no less) is 6mg of elemental Iron 2x day instead of the 30-40mg of elemental Iron 2x day. Despite what the original prescription said, the pharmacy misread it and filled it out this way. When the doctor re-prescribed it yesterday, a second pharmacy was about to make the same mistake again. I guess the pharmacists' reactions were that the doctor mis-wrote it? It can be stressful and tiring to have to be so vigilant for J.J.'s sake, especially in areas that are out of my expertise! I need some better stress management techniques though because I can feel the stress in my body. After calling 3 different pharmacies several times and emailing the hospital a few times it seems we've sorted it out and they will order in the right Iron concentration for J.J. today. We also have to make sure he's taking vit B and some folic acid. These really are only small blips in the journey, and characteristic of the journey, so pardon my complaining. It is nice to vent a bit though and I guess this is still an update of what we're up to!!

98%

Oh ya and we checked J.J.'s blood saturations and he was 98%! The first time he has ever been that close to 100% on his own in his life. Crazy!

juggling meds

J.J.'s red blood cell count is still low and it turns out I've been giving him Iron at the same time as Ca which reduces his absorption. So, we need to juggle his schedule so that the 4 doses are spaced apart. Been on the phone/computer lots today trying to sort it all out. Thankfully it's summer, so it makes it a bit easier to give meds all day long. We'll see how it's going once school starts!

joy

One thing I've noticed at the hospital is the joy coming from unexpected places and how inspiring it is. One day I saw a boy who looked like he was recovering from severe burns and had a clear plastic mask over his face. He was teasing his mom and he was laughing his head off and it was so beautiful. Another time there was a girl in a wheelchair who looked like the use of her body was extremely limited who had a beautiful smile when she was interacting with her family and another boy in a wheelchair who was looking off into space peacefully smiling.

I guess in writing this I see that the strength of family plays a part in the joy I saw too. I'm so grateful that we are in an age where we can go through all of this with J.J. and be an advocate for him and journey with him. Even when I was a child in hospital my parents could only come during visiting hours. Of course longer ago we would have just dropped J.J. off at the hospital for weeks or even months. I'm really passionate about families being involved in a child's medical care and how much it can benefit the child and the family, both emotionally and medically.

But back to the joy.... I know I shouldn't be that surprised, I mean all kids have the capacity for joy whether sick/physically limited or not. Still, it's my hope that J.J. will have that same contagious joy and will make the world around him a better place despite (or maybe even because of?) all of the things he has had to go through.

clot's gone

We went in for a bunch of tests yesterday (echo, ecg, bloodtest and see the cardiologist) and they couldn't see any trace of the clot in J.J.'s heart now. We will still continue on the warfarin blood thinner for a few more months and start up the aspirin again too. J.J. has some extra heart beats, about every 3rd beat there is an extra beat. So the cardiologist is going to think about this for the next month until we see him again. J.J. has been on a drug called digoxin his whole life which would steady and strengthen his heart beat but it also slows it down and they were struggling to get J.J.'s heartbeat up to speed after the surgery and they're not sure they want to slow it down anymore! So he'll mull that one over. Obviously it's not an urgent concern. What's crazy about going to the hospital is that there are so many other kids like J.J.! Not exactly the same, of course, but hundreds of kids with similar courses, life-threatening conditions, long time in icu, same ups and downs, same scars.... J.J. is the heart superstar that we know, but it's amazing to think how many other heart superstars there are out there!

His red blood cells are still low so we will continue with the Iron and his Ca and Mg are still low too so we'll continue to supplement those.

We had a great time in Whistler last week, we had a gorgeous room and the kids were so excited. We have free tickets to the football game this Friday, which should be super exciting for J.J. (He asks to watch football on tv 4-5 times a day!) We're part of the Starlight Starbright charity that gives us tickets to lots of awesome things through Kids Upfront!

Whistler!

Well the cardiologists thought it would be fine if we took a trip to Whistler so we packed up the kids and J.J.'s medications and took a trip for an overnight stay. Billy's band had a show here tonight which came with 2 beautiful hotel rooms, so our family had one and it was a fun outing for the boys. They love having extra time with dad and the guys in Billy's band are some of their favourite people in the world so they're always excited to come along on band trips. Our room had a large flatscreen tv (for watching football, of course!), a gas fireplace, giant tub and a little kitchenette hiding in a closet... the kids are having a blast! After a "swim" in the tub, we read 6 chapters of the Mouse and the Motorcycle in the fold-out bed by the fireplace and now they are both resting peacefully. The tricky part of giving J.J. meds on the road is finding the right foods to put them in to make sure he'll eat it all up. I brought some yogurt from home (unfortunately no frozen blueberries!) but so far so good!

worked out

The women at the lab were nice and everything well, at least as well as could be expected. Of course J.J. was screaming about it and it took 3 of us to get it done... but that's pretty much the usual. Hopefully they won't cringe when they see us coming next time! Overall the outing was pretty fun though. We watched Diego on the portable DVD player and then afterwards went to Shoppers around the corner for some treats. After that we went to the library and got some fun books and videos, even some Nancy Drews for me! It was nice to be in the neighbourhood and it looks like this arrangement will work for these blood tests.

trying local

I've decided to try out a blood lab near our house today. I'm a little nervous because we've always just taken J.J. to Children's because they're experienced with kids and then the results go directly into his chart which make it quick for looking up his history. But if they're only testing his INR (the level of the anti-clotting medicine) it might be ok to do it elsewhere, especially since they will report it to cardiology and it'll likely end up in the chart anyhow. We'll see how it goes. If we have to get the blood test 1-2 times/week it would probably be good to do it close by and save almost 1 hr of driving. If it doesn't go well though then we'll go back to Children's. One thing they have at Children's is the capability to do a finger-poke to test the INR but I'm not really sure if J.J. would prefer a finger poke or not... fingers are pretty sensitive. I hate bloodtest days... I dread the test until it's over!

blueberries in bulk...

Today we went blueberry picking because J.J. is eating about a pound a day it seems! I've been putting a lot of his medications in yogurt with frozen blueberries and he loves it. We bought 17.4 lbs of blueberries but I'm not even sure that was enough!!

Today our house got cleaned and it was amazing! I know that a bunch of you chipped in together so we could get some housecleaning and I don't know who you are yet, but thank you so much!!! The house feels so peaceful and clean and it feels so much better to be home.

Thank you to all of you who have sent us encouraging emails. In the chaos I know that I haven't answered you all yet but it has been so awesome to hear from each of you, so thank you for that too. We're so lucky to have so many people who love us!!

rosy lips and blood tests

I've noticed a few times lately how rosy J.J.'s lips look! That's a nice treat. He has always had slightly blueish lips but now that the ASD is closed in his heart, he has more oxygenated blood to his lips look pinker!

We had his blood tested today and the INR was slightly lower than they'd like so they'd like us to increase his anti-clotting medication a bit to 2 mg/day. His red blood cells and calcium/magnesium levels were tested too but I didn't hear back about that yet. Apparently it's possible that we'll be on the iron supplement for weeks to months because he's anemic. When you lose a lot of blood like J.J. did during the surgery it can mean that you loose your iron stores and then can't replenish red blood cells quickly enough on your own without iron supplementation.

We need to go back on Wednesday for a blood test. I'm considering going to a local blood lab for that. We've always gone to Children's so that they have it on file, and they're more used to dealing with children, but if all we're testing is the clotting and they'll send the results to cardiology anyways, it might be worth it to do it close to home, especially if we need to do it 1 or 2 times a week.

Now to get him to stop being so grumpy and hitting... he was actually really sweet all day yesterday. At the end of the day we went to a park where he could ride on swings and he was super happy about that. We're all still pretty lazy and run-down and keeping around the house. It's a little hard to get on top of things, just trying to give myself space to recover if I need it. Jackie would probably like a bit more action than that, but he's finding things to do! J.J. is still waking up at nights a lot of the time and we're all a bit turned around still, staying up late and sleeping in, so we're all a bit more tired than usual too. Thanks again for checking in on us! krista

resting up

We're all pretty wiped still. We've been laying low, barely leaving the house if we don't need too! Billy and I both feel like we're getting pretty run down, the stress and lack of sleep are probably playing catchup with us now. We've both been reading lots, Billy motorbike books and me a Nancy Drew marathon! I'm so glad we're done with the insuflons (leg patches), J.J. has such huge bruises on his thighs. It almost looks like he was kicked by a horse!

The boys have been spending lots of time today enjoying their presents from so many people-movies, music, painting, crafts, tshirts, food... and J.J. loves CFL of Saturdays! I taped some football for him because he is always asking to watch football but it's basically on once a week! J.J. is stoked that we can finally draw numbers on his chest again for watching football, one of his favourite fan activities.

clot's going away

We took J.J. in today for some tests and things are looking good. He still has limited air entry into the lower lobe of his left lung, a problem he's had for several years but had been better this last year. We'll be keeping in touch with the respirologist about that one. We're also coming back in 10 days to see the cardiologists and have some more tests. The echo (ultrasound) today showed that the clot is more strips of fibrous tissue now and not a lump. They'd like to leave him on blood thinners for a few months to make sure that scar tissue doesn't build up over that tissue and lead to an early stenosis or narrowing of his new conduit. The clot might have come about because there was a delay in getting J.J. on blood thinners after the surgery. It took him a little longer to get the chest tubes out and then after that he had the lung collapse, leading to another drainage tube for 5 or so days, and they didn't want to start blood thinners until that was out to avoid internal bleeding. But it looks like we're on the right track and the blood clot is clearing up.

Because things aren't going well with the insuflons, we're going to switch to Warfarin ("Coumadin"). That'll mean no more leg injections and no more welts in the leg. We'll keep the rest of the meds the same though for now until we come back in 10 days. We'll also have to do some blood tests to make sure the dose is ok. Probably 2 times next week then once a week for a while then move to every 2 weeks. Glad we didn't have to get a poke today!

We'll hold the ASA for the weekend until the levels are good with the Warfarin. He'll ultimately be on the ASA long term. I found out that Rye's syndrome isn't a problem really any more. The cariologist said they haven't seen it in about 10 years and they think it is associated with giving kids a higher dose of ASA (which they used to do) and also interaction with other viruses.

J.J. still should wait another 2 weeks or so to go to Playland or ride a bike but it sounds like he can go swimming pretty soon!

trip to the medical day unit

Well the insuflon was so far gone after 3 doses that it woke J.J. up from his sleep last night when we gave him the injection. I think the bruising is really sore. So today we went into the hospital for a few hours and they took the old insuflon out and put a new one in. It seems the insuflon system isn't work too well for him so tomorrow when we go in we'll decide what to do. We might switch over to warfarin or start injecting the meds directly into his leg rather than into the insuflon. We'll see what the clot in his heart looks like on the echo tomorrow. The disadvantage of warfarin is that he'll need to get the levels checked by a bloodtest once a week for a while. J.J. wasn't too happy to get pokes today but our friend Jared came along and that cheered him up. Now that he's on blood thinners, when he bleeds, he really bleeds.... after taking out the insuflon I had to put pressure on the spot for at least 5 minutes and I don't think it felt too good.

Anyways, afterwards we went on swings at the park and had an ice cream sandwich which cheered him up and was hopefully some consolation.

hematomas

It seems like a lump or a hematoma is already building up around the second insuflon that was inserted yesterday. This is so discouraging because they are supposed to last more than a week at a time. The last one started to go after 3 days and is still a large lump in his thigh, now he's getting another large lump by this new one and I'm wondering where they will even find a spot to put a new one. I'm so sad! I hope it doesn't mean a trip into the hospital to look into it/ put in a new one tomorrow but I wouldn't be surprised if it does. The hematoma's are uncomfortable and he also has one in his arm still from last week. I don't understand clotting and don't get why he is getting clots when he is on anti-clotting medication. Maybe because there is increased internal bleeding at those sites because of the thin blood. This is a whole new thing for us! We just want everything to be over and for J.J. to be all better!

Here is a cute video that showed up on Yo Gabba Gabba today when the kids were watching tv. It's been my solace today :) I Found Love

Friday tests

So we'll have a big day at the hospital on Friday and I don't think J.J. will be too impressed, but hopefully we can make some fun out of it.

He will have a chest xray, echo (ultrasound), ecg, visit the cardiologist then a blood test to check his blood thinner levels, red blood cells and Calcium/Mg.

He's eating and drinking well since getting home and willing enough to take his oral medications so I'm happy about that! He seems less puffy today too so I'm happy about that too.

welcome home party + meds

We had an impromptu welcome home party a few hrs after J.J. got home, he'd been looking forward to that for a while! We had a lovely time, and thank you to everyone who stopped by to celebrate J.J. coming home from the hospital! He got a little tired after a while and just wanted to watch tv by himself in mom and dad's room, which is fine.... I'm glad he can listen to himself and know what he needs!

He was up at 4 am for a while but it's nice for him to be home in his own bed, he is already so much more rested after one night's sleep at home! He played quietly with lego for a while and of course the first thing he did when he got home was change his shirt and play some drums!

I know he's feeling better because I had to tell him to stop playing drums at the table, as per usual! He was happy when a few friends stopped by with a present and he has started calling everyone "baby" again, which for some reason Jackie and J.J. think is hilarious and has been the running joke this summer!!

It's an adjustment to be back home and be in charge of all of his meds + keep house, and a little intimidating when I'm not confident about J.J.'s health. For instance, he was a bit sweaty last night and when things like that happen we need wisdom to know whether it's a serious symptom or not. We were sent home with lots of resources and can always call or bring him in for serious concerns, but for the most part we just need to get to know him and what he'll be like right now.

We have 14 doses of medications to give him each day so that's pretty time consuming. It will taper off over the next few weeks. Here's our schedule for those of you that are interested:

9:30 Lasix

10 inject Enoxiparin

10-11 ASA tablet, Tylenol, Calcium/Magnesium, Advair, Iron

2pm Spirnolactone, Tylenol

Supper Calcium/Magnesium, Lasix, Iron, Advair

10 Inject enoxiparin

I guess eventually we'll need to start wearing an eye patch every day for a few hrs but that might be a lesser concern at the moment!

going home!

So it sounds like we're going home today! His liver is still a bit enlarged but the cardiologists can live with that. We'll be going home on lots of meds, and will come back on Friday for a blood test and check in with cardiology. The insuflon is getting bruised and sore so we'll put a new one in today. We'll need to take the steri-strips off of his incision, weigh him, maybe a chest xray? It'll be an adjustment to go home, lots to take care of, but I'm sure J.J. will be happy!

the park

Yesterday afternoon (Mon) I asked for a pass to take the boys out and we went to the park a few blocks away. J.J. was soooo happy on the swings. He was laughing and smiling and even walked around a bit at the park. We went to Safeway to buy ice cream sandwiches after, his favourite treat this week. We had to be back for 3 to get poked for bloodwork, which he was really sad about, so at least he had the ice cream to look forward to! The results of the bloodwork were that the blood thinner level is within the range they'd like it now and his Calcium is still a bit low. They'll probably increase his supplementation for that. In the evening I got another pass and took the boys to VanDusen garden. It was kind of a long bumpy ride unfortunately and J.J. wasn't too impressed. Jackie and I liked it, and we saw the set for Marmaduke the movie, they're filming it there. On the way home we stopped to watch field hockey and wheelchair races, J.J. was much more impressed by that!

VanDusen with Jackie

here a few photos from the garden down the street!

fluid

Thanks again everyone for following our blog!

J.J. needs to stay in another day because he's retaining a lot of fluid and they need to get that sorted out. If he has too much fluid on board then he could have water-logged lungs. His ankles were really puffy last night and today his eyes are really puffy. They've increased his Lasix dose and have added Spironolactone to the mix as well. His liver is enlarged so it sounds like that's where he's retaining the fluid. The lump in his arm is because it didn't get held down enough after he had blood taken. He needs to get blood taken this afternoon to check his blood thinner level and his Calcium level. Hope they get the Calcium right this time, even though we double checked that they were testing for ionized Ca and not total Ca last time they still didn't take the sample correctly. This has happened several times before unfortunately.

He has developped quite the growl and growls/grunts under his breath any time someone comes to the door or if we try to get him to do virtually anything.

Anyways, we're sitting tight another day and hoping to get J.J. moving around more and drinking more.

still fragile

It seems like J.J.'s still pretty fragile. He isn't moving too much and tonight his ankles were the most swollen I've seen so far. He's sitting alot and with this heat, that doesn't help the ankles either. He seems to be retaining a fair bit of fluid still, he still weighs about 1 kg more than he did before the surgery. We took him out of the hospital tonight which was nice but he was still grumpy and sad and tired. He did eat 3 ice cream cones though, so that's gotta count for something!! He had a fever that's gone up to 38 degrees and he fell asleep. He also has a hard lump in his arm where they took the blood yesterday. Hope we don't run out of spots to get the blood as he needs quite a few more blood tests in the next while. His veins are getting pretty used up! Hopefully his ankles will feel better with them up in bed. They usually get back to normal by morning. We'll see what tomorrow brings. Billy's still sleeping over with J.J. in his room and I'm sleeping at home with Jackie, although he'd like it if we all slept together at the hospital!

waiting around

So J.J. had his echo today and the clot was unchanged. The levels of his blood thinner are too low so they've upped the dose. Normally they check it 4 hrs after the 2nd changed dose but that would be 2 am so they'll wait till 2 pm tomorrow. The problem is because it's a long weekend, there won't be a lab open to outpatients so he needs to stay an in-patient until he gets the test. We asked if he could go home on a night pass, and he could but we decided to stick around another night because that might be too confusing for him to go home then come back to this room. We're all tired, have cabin fever.... Jackie's antsy, I'm depressed, J.J.'s grumpy.... we can get a pass to go outside for a few hrs so we'll do that when it cools off a bit and have a party today if we can get it together.... hope that'll help.

needles

Well I gave J.J. his dose of Enoxaparin tonight... I a little creepy! I have to stick a sharp needle into his leg-port. J.J. had fun watching the Riders-Calgary game tonight. He's been asking for a football party tomorrow so I think we'll have one!!

The boys had an epic air hockey session today... thanks to everyone putting in air hockey hours!!

Billy ran out to Richmond today to catch some bikes at the sand dunes. I had a nice hour at the VanDusen gardens tonight and picked up a bubble tea earlier today from Dragon Ball, my favourite!

Here's a picture of J.J. looking thoroughly unimpressed at getting his vitals taken!

We took J.J. outside onto the balcony tonight too:

I can hear the fireworks going off, wish I was out there to see them! I'd take J.J. out but he's not a fan of fireworks, they scare him.

Enoxaparin patch in, ng tube out

So the Enoxaparin patch was put in last night. I don't think it hurt too much, the needle is apparently very small. J.J. expects pain in most procedures so puts up a big fight, even just to get a bandaid on. He had his first dose last night and second this am. They'll test his blood at 2pm on the dot today to make sure his levels are right. We will need to stay here to make sure his levels are right and when we go home with the patch (likely for 3 weeks) we'll need to come in weekly to have a new patch inserted and will also have to get the levels checked periodically, which will involve more blood tests. The next month or so will involve a lot of trips back and forth to the hospital for follow up appointments etc.

I offered for Jackie to go somewhere else tomorrow morning because he's been dragging a bit in the ams. But he said no, we need to wake up and eat breakfast and go right away to the hospital. He seems happy to come in still. The old sibling rivalry is starting to set in and Jackie likes to have my attention a fair bit so I'm getting a bit worn out but it's also nice that he's such a good sport about being here and I think it's good for J.J.--he makes J.J. laugh at least as much has he annoys him! Jackie was starting to get a little stir crazy yesterday evening so I took him to VanDusen gardens (2 blocks away), which was nice for both of us. The children's garden was awesome-there was a giant caterpillar, slug and snowboarder made out of plants!

He's taking all of his meds mixed with food now so we were able to take the ng tube out today (the tube that went down his nose to his tummy). Billy actually did it under the nurse's supervision. It was the tube that never ended! Glad to get that mucky thing out. It'll give his nostril a rest too. He was dreading it but it must feel good to get rid of it. A few times today he said "I'm better now!" His voice is still pretty quiet/nasal which could still be and after-affect of being intubated. He's not pronouncing his words as well as usual so hopefully that will get back to normal.

Not looking to the bloodwork this afternoon but after that there's nothing until the echo tomorrow, which is basically an ultrasound so he finds that pretty relaxing.

Both he and Billy had a decent sleep last night for the first time, the excema still seems to be there but he feels less itchy and could fall asleep. Billy's been here for 2 weeks straight. I started going home with Jackie at nights 3 or 4 days ago.

discouraging news

Just when it actually did seem safe to get our hopes up about going home we found out some news that will keep us here at least a few more days. They did an echo for J.J. today and found out that there is a 1 cm (10mm) blood clot in his conduit, right behind the valve. They weren't going to do an echo today because they had mistakenly thought that J.J. had one last week. Luckily we pushed to look into it a little more and it turned out they were looking at June 25. So he went down for an echo and they found the blood clot. At first it sounds a little alarming, seeing as the conduit is only 22 mm in diameter. The cardiologist was fairly calm about it seeing as it's not affecting the heart's function. If it breaks off the clot will go to the lung and that might give J.J. a bit of chest pain but it's not dangerous. So they'll go after the blood clot with blood thinner (Enoxaperin) and it sounds like the least invasive way is to put an injection patch on him. That will give them a port into which they can inject the medicine for about a week without hurting him. (They give it subcutaneously which means just under the skin.) Hope he doesn't get a skin reaction to this tape! They will do an echo again in 48 hrs to make sure the clot doesn't get bigger, hopefully it's the same or smaller. If that patch is the only remaining medical thing, they won't keep J.J. in hospital for that. They will teach us how to inject the medication and send us home with the patch.

I'm just sad for J.J. that he needs more pokes and procedures. It seemed like we were on the up and up. His oxygen has been off all day though and they aren't monitoring his numbers now so things are getting lighter for him. He doesn't have a day in mind yet for when we're leaving but he has started planning his welcome home party!

On the positive side, J.J.'s been laughing a bit more, which is nice to see, and even gave us all kisses today. A lot of tv shows make him giggle and he's starting to be a bit sillier.

Shorty

Any of you who are Canucks fans will understand why Billy was stoked to meet John Shorthouse in the playroom today with J.J. He needs to be in the hospital too and came by later and brought the boys some Canucks stickers!! (At which point J.J. told him his favourite team is the Penguins! Ha! Although when Shorty asked J.J.'s who his favourite player is J.J. said Canucks.) The part that I liked the best was that Billy was wearing scrubs when he met him.

oh no Cars mia!

The movie Cars has gone missing this am which knowing J.J. is a serious matter! It probably got borrowed by someone else, we're just trying to find it.

No more talk of PPS so it's probably not a concern. We're trying to get him to take all of his meds by mouth today so he can get the ng tube out of his nose tomorrow. He had his aspirin with some Fruit Loops this am so that's good. His excema on his chest is still really itchy. He had another terrible sleep because of the itchiness. They're switching to another treatment cream today that will be stronger. We can do regular creams between... any suggestions?? Maybe an Aveeno oatmeal cream or something. His whole chest is a rash. I have a cream here Glaxal Base as well but I'm not sure it's doing much.

We had an ECG today which J.J. hated, he hates anything involving stickers these days! We'll go for another wheelchair ride in a while to go for another chest xray.

J.J.'s getting up and walking around a bit, which is great!

PPS?

J.J.'s been running a low grade temperature (37.9) which could indicate Post-Pericardiotomy Syndrome, a bit of swelling of the pericardium (the area around the heart) that gets insulted from being bothered at the time of the surgery. PPS usually shows up in kids a week after surgery, in up to 40% of kids, and is more common in kids over 2. The symptoms are irritability (which would be hard to differentiatee from his general irritability), joing soreness (which he has difficulty expressing specifically) and a low grade fever. (Swelling of the pericardium too.) It would be treated likely with ASA, which is due to start tonight anyways because the chest tube is out and that was the last concern for bleeding (ASA is a blood thinner too). We just heard from the doctor though who is not worried till it's over 38 and even then all they'd do is ASA, which he is getting anyways tonight.

His oxygen Sp02's (sats or saturations) are higher when he sits up so we kind of need to keep him sitting up if he wants to keep the oxygen nasal prongs off! They'll likely keep them on overnight and monitor his sats tonight. We got off of the monitor for a few hrs at a time when we went to the playrooms, so we're almost just doing spot checks during the day already.

He needs a chest xray Fri am and on Sat am we'll poke him for blood again to see how his Ca and Mg levels are doing.

Eventually we'll need to take that tube out of his nose and start actually giving his oral meds orally. That's not his favourite so hopefully that won't be a huge fight.

He's still really itchy. Here's hoping this new medication will help!

J.J. and Jackie are already getting excited about planning the homecoming party. Jackie has been great hanging out with J.J. all day, making him laugh by doing silly things, being helpful and being a super-good kid. Mostly we eat, watch tv, go to the playroom and Jackie does projects in the room-different crafts or activities. Today he and I went to the cafeteria to use the waffle iron.

itchy night

J.J. had a really restless night because he was so itchy. He scratched so much that he took off some of the steri strips over his incision and scratched some of the scab off. He also opened one of the chest tube wounds by scratching and made it bleed a bit. Finally he had a couple of doses of Benadryl and a dose of Chloral Hydrate to help put him to sleep and he had a decent sleep after 3 am. People kept coming in between 6-8 and Billy kept kicking them out. J.J. got up at 10 am.

He's off of his oxygen now almost 2 hrs and seems to be doing great without it! He still has the ng tube in his nose, that might stay until he has fewer oral meds to take. We tried to get him to take the tylenol orally earlier but he refused to eat the tablets and that's only one of the 5 meds he's taking at the moment so we'll leave it in for now.

He's still pretty tired and grumpy. He has started throwing things and getting mad when medical people just come in the room, even the Child Life lady and she's the one who brings the toys!!

We're keeping fairly cool in here, it sounds like everyone else is cooking! They've prescribed an anti-itching medication that we can give J.J. tonight so hopefully that'll help him get a better sleep. We might be able to move to spot checks soon for his 02 which means other than the ng tube he'll be tube/wire-free! He must have had about 25-30 last week! So this is a big improvement! It's definitely getting easier to get around.

There has been talk of maybe going home this weekend, but we'll still take one day at a time!

drawing 4s

J.J. has had an excrutiatingly itchy chest, partly from the incision but he also has a rash from the tapes that were used over the incision. We have some ointment now so hopefully that will help. To distract him I forced him to ride in his wheelchair to the playroom. He didn't want to go, and at first he insisted on being really grumpy. Jackie was being really silly and J.J. was trying really hard not to laugh at him. He did laugh despite himself a few times though. Once we got to the other playroom and started to draw he got really engaged. He sat forward in his chair for about an hour, drawing and was loving drawing nuumbers. He was extremely proud of his 4s and smiled every time he drew one.

At one point the surgical fellow came by and we had to come back to the room to get his chest tube taken out. That's one less thing to drag around. He does have a little fluid in his chest but they aren't going to rely on the chest tube to drain it out. He seems to be retaining fluid, he weighs 1.5 kg more than he did when he was admitted. We're keeping track of the fluids that go in and out and going to increase his Lasix.

They tested the contents of the chest drainage tube and they don't think it's lymphatic fluid from the thoracic duct. That's good because he would need to be fat-restricted and he's asked for pizza for the 4th day in a row!

Pretty soon they'll be starting J.J. on ASA and he'll probably stay on that permanently. They stopped giving him all of that Magnesium and he's getting the Ca/Mg/D supplement that he used to get at home because his Calcium is low. Unfortunately he needed a regular poke for blood this morning and a finger poke too. At least they won't test his blood again until Friday.

The 02 saturation monitor was beeping non-stop all night like an alarm clock so neither Billy nor J.J. got much sleep all night. Then they came in to take his blood at 6 which surprised me because I thought they wouldn't do it until I was in at around 7:30. I'm super exhausted right now. I could probably fall asleep right now if I closed my eyes.

J.J. had a couple of rides down to radiology today to get his chest xrayed. He really didn't want to do it. So he's had a lot of icky hospital experiences today that were no fun. For the most part he's pretty grumpy and tired, but today I caught a few glimpses of happy J.J. a few times. He was even joking around and being a bit mischeivous when we were drawing. He just fell asleep for a nap. That should do him good, hopefully he gets a good sleep tonight!

quote

J.J. said ow! And I said what hurts? He said "I'll feel better at Playland, that's a great idea."

heat wave

With this hot weather, I have to say it's not such a bad time to be stuck in an air conditioned hospital! Jackie had fun hanging out today too. He just did his own thing and played quietly. It's so nice to hang out with him again too!

air hockey!

J.J.'s blog is averaging about 50 hits a day.... it's so touching that so many people are checking in on us! Thank you!! We made it to the playroom, J.J. played some air hockey from a wheelchair then sat on a chair and played with cars on a table for a while. He's been awake all day today, eating and drinking a fair bit and lying around getting better.

We're weaning the oxygen that he's on, he's at 1/4L now. He's on Tylenol for pain and seems pretty comfortable with that. He's sore if he gets up or tries to pull himself up in a chair etc. He's still on a bit of medication but there was a bit of a gong show over his magnesium. He's had low magnesium and low calcium off and on for several years. We were supplementing him for a while but the Endocrine doctor decided he didn't need that last December. So this has been one of those hospital situations where there's 10 cooks in the kitchen, playing phone tag, changing plans, miscommunicating... It's important that he has ample magnesium and calcium for his heart function but also normally has low levels, so it's a balance. Anyways, when he gets lots of magnesium he gets the runs pretty bad. I tried to warn them but by the time we had advocated and researched enough to stall the doses he stomach was pretty rough. They've stopped it for now thankfully and we'll talk about it again tomorrow after he's had his bloodwork.

He's making more conversation, which means he's feeling stronger. He's asking what tomorrow is, and planning to go to eat ice cream at Playland with our friend Scurvy. He said "I don't wanna hurt tomorrow." awww

He still has his chest drainage tube. That was another kaffufle (I have no idea how to spell that). They've taken a sample because there is more fluid drainage than usual (since it was put in to drain air) and they want to make sure it isn't lymphatic fluid leaking from the thoracic duct, which can sometimes get damaged in heart surgery. They've clamped off the tube and will xray tomorrow morning to see how the lung is looking. If it looks decent they can take the tube out.

J.J.'s sitting up, watching Cars, playing with his Cars character cars and just finished 2 ice creams.

He's developed a pretty cute coping mechanism with all of these medical people that keep coming by to talk or check him out: he pretends he's sleeping. As soon as they come to poke and prod or just talk with us too long he closes his eyes and periodically peeks out. As soon as they're gone he wakes up from his "nap"! He must have done that at least 10 times today! Better than a temper tantrum, anyways!

getting around

J.J.'s sitting in a chair watching TV and nibbling on some pancakes. I forgot that having no iv's means he has to get poked for bloodwork every morning. Bummer. But he's already thrown a temper tantrum over getting his temperature taken! He can get pretty grumpy in here, not that I blame him. It was hard for J.J. to get comfortable so he was up a lot with Billy last night. We're pretty tired and sore. Probably not as much as J.J. though! We're getting some portable monitors and portable oxygen so J.J. can make his way over to the play room... hopefully we can get him motivated to move around a bit.

J.J.'s homework

So J.J.'s main job is to get up and get out of bed, get moving and take deep breaths to get his lungs doing well again. He's not too excited about it, we're hoping air hockey and playing harmonica will do the trick.

We saw him crack his first smile when he was holding a popsicle in each hand. His nurse found him Mighty Ducks 2 and that got him excited (which mostly consists of raising his eyebrows at the moment!). He asked for more and now we're onto Mighty Ducks 3 and he's happy as long as we fast forward to the hockey parts! It's been making him the chattiest we've seen him so far!

Earlier today when he was sitting on my lap he said very practically, "Maybe better tomorrow."

exiting icu

We've moved out of the icu! This is good news... the chest tube is still in as it was still draining some fluid. We got 3 of the 4 pacer wires out and all of the iv's are out! So we're coming along!

1:30 Monday

They're just getting ready to sedate J.J. to try removing his pacer wires and chest tube as well as change his dressing... just trying to coordinate everything and get it done at once while he's sleeping. Hopefully the pacer wires will come out and they won't have to be left in because if they're left in he won't be able have an MRI at least in his chest area again as the copper messes up the imaging.

good night's sleep

J.J. had a good night's sleep, (at least since 1), he's still sleeping really soundly. The nurse let Billy pull up a chair bed next to J.J. and he got a chunk of hours of sleep too. He's off now to cap off his sleep in the van. There is a lot of stuff to do today: remove air drainage tube from the lung, take some xrays, remove the central line, remove or clip the pacer wires.... but it's all working towards moving to the ward. Hopefully he tolerates all of these procedures well. The actual pacemaker boxes have been removed from his chest so we keep progressing. He is one of the few kids that actually eats food in the ICU, usually if a kid can eat they're outta here. Thanks to all of you for checking in on us and reading the blog. It feels good that so many people care!

pizza party!

J.J.'s off of codeine and a lot more like himself. He (reluctantly) stood up for a few minutes and took a few steps to the chair, sat in the chair for about and hour and then took some steps to get back to bed.

This evening he asked for pizza! So Grandpa ordered him some pizza and he sat up in the rocking chair with dad for another hour or so and ate 2 pieces of pizza!

He's looking good, still worn out and grumpy, but wearing glasses and watching Bearnstein Bears and telling us a bit more what he would like. In fact he had initially ordered a hot dog and pasta for after the pizza! He has even been making conversation a bit tonight, commenting on the shows he's watching.

It's encouraging to see J.J. doing better and getting some of his personality back! Although I have to say my back is killing me from wrestling him onto those bed pans!!

Jackie seems a little more settled too and more like himself. He had fun at the block party on our street yesterday and has been hanging out lots with Grandma and Grandpa. He asked to come in and see J.J. today and he hung out at the hospital for about 2 1/2 hrs.

J.J.'s incision is getting itchy and he keeps saying he wants to go home. Soon enough, little buddy, soon enough!

staying the course

Well J.J.'s resting lots. All of the air that was in his chest cavity has drained out and his right lung is reinflated. Now he'll just need to heal over the place where the leak was. He's been doing a lot of sleeping. We haven't had wireless internet at the bedside for a while but hopefully it will come back later. Sometimes it gets discouraging for me that J.J. is slower at getting better, I think Jackie is feeling that way too. It's not really a big surprise given J.J.'s history though, I know. He's still doing better than last time and the really serious risks seem pretty much behind us now. J.J. just needs some time to heal. I am definitely getting lots of ideas for my work on the Critical Care family advisory being back in here again! ha! love Krista

chest tube back in....

Well, after taking out the chest tubes, there must have been a pocket of air that was a bit trapped by them, but by an hour after they came out the right lung was leaking a fair bit of air so he's got a pneumothorax so we're going to put a chest drainage tube back in on his right side and we'll be sitting tight for a few days for it to drain out and heal. Right now that lung is partially collapsed.

chest tubes out

J.J. just got his chest tubes removed and did well with it.... we weren't able to keep the tubes for fuel lines after all, sounds like fuel will melt this type of plastic. We tried!

getting up

J.J. sat up with his feet over the bed, took a few steps (with help) and is sitting in a rocking chair watching Blues Clues! Has his glasses on, had some sips of milk... lookin pretty good! He's still tired and spacey but we're trying to keep him awake while that codeine works itself out.

pacer wires

Still off of the pacemaker, J.J.'s been sleeping soundly since rounds. Sounds like they will leave the wires in for a while. When they're comfortable that he doesn't need it they'll likely snip them and leave the wires in his body. They're stainless steel covered in plastic. Hopefully not a lame grade of plastic that leaches nasty stuff, but it's not like he doesn't have a lot of other foreign objects in his body! Cloth conduit, bovine valve, cloth patches, metal stent (like chicken wire) and his chest bone is wired together.... Apparently it's really common to leave pacer wires in, other centres do that routinely. They don't want to pull them out and cause bleeding because they're removing the chest drainage tubes.

goodbye chest tubes

Well they're trying J.J. off of the pacer right now. His heart rate is a little bit on the slow side but it's a sinus rhythm so they're happy with that. It's been a few minutes off the pacemaker but so far so good. They are planning to take the chest tubes out today after some chest physio. He mostly sleeps still so they are going to take him off of the codeine and see how he does on just tylenol. It'd be good if he woke up a little, he needs to drink more. A few times he has woken up pretty agitated saying that he is itchy. They'll change his chest dressing when they take out the tubes so hopefully that'll help. Sounds like they may even be able to let the incision heal open-air.

sittin tight

looks like we'll be in the icu for a while longer. J.J. is still relying on the pacemaker, I think they said he has a junctional rhythm? We will be in the icu as long as he is on the pacemaker and they will review it every 24 hrs. Not totally surprising that we'll be in icu longer than other kids getting redos, that's our style! We know better than to get our hopes up about getting out of here/the hospital and when we're out, we're out. Still, it would be easier on our family to get up to the ward because then one of us can actually SLEEP with him at nights rather than having to stay awake to be with him as sleeping parents in the icu is frowned upon. One thing at a time. Being on the ward has it's drawbacks too: being bored, getting pokes for bloodwork instead of pulling it out of the central line, oral medications (which is a wrestling match often!). Of course we want J.J. to be in the place that is best for him and it looks like that's the icu for now.

They will leave the chest tubes in for now as they are still draining some and removing pacer wires could cause some bleeding. If the tubes stop draining, they may still remove them before the wires. Billy has put in a request that they save the chest drainage tubes so he can use them for fuel lines on his motorbike!

He woke up for a minute and was kicking and grumpy but is back to sleep. Hopefully he'll stay in good spirits today. If I'm with him he asks for dad and if Billy's with him he asks for mom... but he does that when we're home too. He likes the non-stop party.

great night

J.J. had a great night, so that's a relief! The switch from morphine to codeine really did the trick! He would wake up periodically (maybe 10 times) and ask for a drink then go back to sleep. He drank a lot-8oz of milk, 8oz of water and some apple juice too.

He's looking a lot more like himself and just peacefully sleeping.

He still needs to get those chest tubes out, it looks like the air lea

k has stopped so they'll probably do that today. They'll give him some fast-acting sedation for about 10 min to do the tubes and change his chest dressing.

His bloodwork just came back and it's all normal so that's good. Last night it was a little wonky and his CO2 was high, meaning he wasn't breathing deeply enough on his own, but he seems to have resolved that. Last night he was on 3L of oxygen in the nasal prongs and now he's weaned down to 1/2 L. All good things!

He's still on the pacemaker. We'll see what the cardiologists have to say about that when they come for rounds this morning.

We're still here around the clock, Billy was here last night and I just got here after 7am. Jackie seems to be doing alright, lots of people we love

are taking great care of him. Last night he came in and saw J.J. He made a banner for J.J. with some friends that says 'get well soon J.J.' and we hung that up. We had shown him photos ahead of time so he knew what to expect. All he had to say later was "J.J. has a lot of wires!" He had a sleepover last night but he'll be in his own bed tonight and tomorrow there is a block party on our street so he'll like that.

Love Krista

I've been taking pictures but wasn't sure if you'd want to see them or not? He's starting to look a little less post-op now so hopefully the pictures will be ok now... Here's J.J. yesterday evening, starting to get fewer tubes!

J.J. shows up!

Krista's sleeping now. I was supposed to come in from a nap at 10:30, but I woke up at 11:45 and my body wishes it was sleeping for the night! I got close to 8 hours of sleep this morning, but my body clock is messed up.

J.J.'s nurse switched him over from Morphine to Codine and it seems to really be doing the trick. He's sleeping for an hour or more at a time now, and really sleeping. When he wakes up, you can see little bits of his personality as he's asking for things. He drank a lot of milk and water, and you can see he's got a real appetite. It is really, really nice to see him sleeping soundly, and know it's not just the drugs having him snowed under. Hopefully it's a week or so of recovery from here, and it's back to tearing things up around home.

tripping out

So J.J. had a good one hr nap at 2:30 (or 1:30, I can't remember now!) He has been really quite restless today. More so in the morning. But most of the time he drifts off for a minute or two then sort of writhes around. We got him out of bed and tried holding him in the rocking chair. He would be settled and then start, almost like when a baby puts their arms up when they're sleeping. He might have been having a falling sensation from the drugs. Especially later in the evening he started hallucinating. He is seeing things far away that he wants and is trying to reach. After a while Billy started going along with it and it seemed like they were picking apples and eating them. He keeps grabbing for things and trying to eat them. He also keeps saying he's hungry!! He's a little too dopey to eat too much. He had some ice cream, he tried with some popscicles but they just kind of melted.

About an hour ago we switched from morphine to codeine and tylenol so hopefully he will hallucinate less. |He's calm right now, watching a little more Blues Clues and occasionally picking apples. Hopefully this drug switch will do the trick and the rest of his sedative drugs will wear off.

He's not too impressed with all of the stuff stuck to his body. He pulled out an arterial line out of his arm earlier, but it turns out that was a good thing, as it was starting to go and his arm is a bit puffed out. Pulling it out prevented it from getting puffier and more uncomfortable.

The positive side of his restlessness is that he's taking care of his physio for his lungs! Oh ya I found out a little bit more about his lungs: because of scarring from when he was a baby the sack around the lungs is adhering to the lungs. That sack is not usually attached to the lungs and that is the bit of tissue that probably was interfered with during surgery.

Now it's 11 pm and J.J. has just fallen asleep, he looks really good and calm so here's hoping for a peaceful night!

waking up...

Well, they took out the breathing tube at 10:30 and it has been a pretty crazy wrestling match ever since! He's been reallllly thirsty but he can't have anything for a few hrs in case the breathing tube needs to go back in. That, (and a few other things, I'm sure!!), is really making him grumpy. He's kicking and hitting and writhing around. He is also confused from the morphine, which doesn't help. I could climb into bed with him and snuggle him (not that snuggly, mind you don't forget he keeps kicking me....), but it's taking 3-4 of us at a time to stop him from tangling up in his multiple lines... The cardiologists would like to keep his chest drainage tubes in for another 24 hrs because one lung has a bit of an air leak. The heart had scar tissue attaching to the lung and it needed to be separated for the surgery, so some of that lung tissue is a bit dammage. I haven't been able to count all of the lines and tubes coming out of him, plus the incision likely hurts so it's not surprising he's a little grumpy.

We just sedated him a bit but he goes through the sedation quicker than most so it might not last too long. They're going to try and clean up as many lines and get rid of as many things as possible for now and then he can have a popscicle which will hopefully help!!!! He is soooo thirsty, he keeps begging even to have his mouth rubbed out with a sponge.

Well I better go eat before I get back at it....

Thurs am

J.J.'s still ticking along... they closed his chest yesterday evening around 6 pm. They were ready to take out the breathing tube last night but he's such a fighter that everytime they go down on his sedation he starts getting really agitated. They will likely try to take it out sometime this morning.

We're all doing well, Jackie seems happy and has been doing lots of fun stuff. We've had a visit with him everyday for a few hours. We're still managing to be with J.J. around the clock and getting reasonable sleep and food.

Wednesday

Hi everyone, sorry to be out of touch but the internet has been difficult to access today. J.J.'s doing really well. He's hard to keep sedated, for some reason he's that type! He is on drugs that stop him from moving but we can tell by his blood pressure whether he is awake or asleep. He slept a good part of the night and started waking up around 5:30. We have had headphones on him the whole time, listening to some of his favourite shows and music. He's listening to Randy right now!

Billy stayed up with him all night and I came in at 6:30. Billy slept about 7 hrs and has come in now, I'm off for a nap and hopefully Billy gets another nap before doing the night shift.

It's strange to feel comfortable in such a creepy place but having J.J. here makes it seem so normal. It is definitely an emotional place, seeing what all of the other parents are going through and the tough things they're facing, including some of the same things that we faced when J.J. was a baby. It's been really great to see so many old friends... we got to know a lot of nurses, doctors and respiratory therapists since we sat in here all day everyday and a good part of the night for 5 mos! Everyone is so shocked at J.J.'s size since he was just a little pipsqueak when we were here last. Ironically, our nurse today has only been here since April so she's feeling a little out of the loop!

They've gone back and forth on when they can close J.J.'s sternum/chest bone. There's been some juggling in the OR and it sounds like he can get it zipped up this evening or tomorrow. Possibly he can be extubated (taken off of the breathing machine) tomorrow then too.

He is still on a pacemaker and he will need to stay in the ICU until his heart rhythm sorts itself out. Before they were just pacing the atriums but now they are giving the ventricles back up when it's needed too. His heart has to re-learn pathways for electricity because they have been disrupted with the surgery and there might be some stitches in the way of some of the old pathways. His heart rhythm will have changed a bit because they closed the hole between the two atriums where some of the blue/de-oxygenated blood used to slosh back and forth a bit.

The oxygen levels in his blood may still be in the 90% range (people are typically at 100%) even though they closed the hole in his heart (ASD). J.J. still has a bit of a VQ mismatch, which means that he's not matching the blood flow with the airflow to his lungs. His upper right lung is hyper-inflated so air gets trapped there a bit. When he was a baby that lung got blood but not enough air and the other lung got air but not enough blood.

One of his doctors who usually tends to be more conservative and protective of J.J. is very happy with him and thinks things are progressing well, so if HE's happy, that's a good sign!

Once J.J. gets off of the breathing machine he can wake up a bit more. He's a feisty one so here's hoping he won't be grumpy about all of these tubes when he wakes up!

Thanks again everyone for your love and support! Love K

11:15 pm Tuesday

I had a nap, and I'm planning to stay up with JJ tonight. We'll see how that goes. The plan is for JJ to get his chest wired shut tomorrow afternoon, but there is an emergency heart surgery that is going to take place tomorrow which may bump JJ for the day. We won't know until the afternoon on Wednesday if he's going to get wired up or not.

He's on a pacemaker for now. He'd been off of it for a few hours, but the doctors weren't totally happy with his rythm, so he's back on for a while.

He was awake earlier. Not completely, but he was responding by shaking his head. He said "no" to almost everything, even his favorite songs, but eventually said "yes" to "Do you want to listen to Blues Clues?"

He's doing well, and the surgeon said he was happy with how things went. We'll try to get an update done in the morning.

He's got some tubes coming out of his chest for drainage, looks like about 8 different things being fed into him for pain control and sedation and some other things. Overall, he looks good. Totally wasted, but good.

icu time...

We just met with the surgeon. Because of the difficulty in the surgery, they've closed up the skin on his chest but left the bone open. So he'll have to go in again tomorrow afternoon for a quick (half hour) wire-up of his chest bone. It sounds like he was a little swollen up, and so they were taking extra precausions. He's still intubated (has a machine doing his breathing for him) and he has a pacemaker hooked up to his heart to try to get his rythm right. He has 3 or 4 drainage tubes coming out of his chest. They'll keep him right snowed under until tomorrow after they've got his chest bone wired back up.

The valve they put in came from a cow. It's in some kind of cloth tube conduit. Sounds like everything is alright. We should be able to see him in a few minutes. He won't be able to respond to us, but apparently he can hear us when we talk, and feel when we touch him.

The stent in his right pulmonary was expanded from 6mm to 8mm to match the rest of the artery. They didn't use a patch for that but they did patch his ASD

They will keep him on the ventilator until Thurs or Fri and then it'll be at least another day before the ward as long as everything keeps going smoothly. The ICU isn't our favourite place but we'll make the best of it. We definitely have a love-hate relationship with this hospital! But we're really grateful for the awesome care J.J. gets.

ps

doesn't sound like J.J. will be extubated right away, because of the bleeding he will need to keep really still so they will keep him really sedated and keep him on the ventilator for now.

2:30 Tuesday

Just got a call from the Surgeon. They're stitching him up now. He says the surgery was difficult and took longer than expected but that everything looks good and they got everything done that they were hoping. We get to see him in a half hour.

They had to stop his heart for 110 minutes, and it sounds like he was bleeding a lot. So they kept him for a while to make sure that was under control. The old repairs were really calcified, and that made things a little tough.

Thanks to everyone who's been going through this with JJ. Thanks to the food bringers and well wishers and pray-ers and Jackie watchers.

We got to see Jackie for a couple hours this afternoon. Well, Krista did, I was sleeping trying to get ready for an all nighter tonite. Jackie lost his mind on the air hockey table. We found it later.

8:15 Tuesday

JJ's gone in for surgery now. We had known that it would be open heart surgery, but were under the impression that they wouldn't have to stop his heart. This morning we found out that to repair the ASD (hole in his heart that they put in their last time) which they are going to do at the same time as replacing his valve, they will have to stop his heart.

So he's in now, and there's nowhere in the world that is more capable of doing this surgery, but it's still pretty hard on us. Doctors are saying he'll be out

around 1. We'll have an update sometime after that. Prob

ably a couple hours after as we'll want to sit with him while he's waking up.

JJ was really great about coming in two days in a row. He has a little hockey game to play with here and he is into it!

getting to the hospital!

the set up

The nap-mobile!

We scoped out the parking lot and think we've found the best spot with a little grass and the most shade...

and a bird's nest with some little babies in here!

Whenever I asked J.J. what kind of popsicle he wanted he would say "all of them!" Popsicles and wheelchairs.... good times!

blues clues-a-thon

We're done the heart catheterization... just waiting now to go home. We have to stay for 2 hrs more to make sure he's good to go home. He did so great today... things were running about 2 hrs behind so he didn't get in until 11:45. He went almost 5 hours without anything to eat or drink and he never complained! (We couldn't eat in front of him so we were complaining more than he was!) A few times he asked for a drink or said he was hungry but when I told him he had to wait until he went to sleep, he just accepted it! He was so sweet... he had a good time playing with a mini air hockey game and watching Blues Clues. (We're on a big Blues Clues kick this week, he's watching it in bed again now!)

So they got the info they needed from the heart cath. His old conduit is quite narrow and calcified, which is what they expected. When J.J. was a baby, his right pulmonary artery was very narrow so they put in a stent to enlarge it (I believe to 6mm). Tomorrow they will plan to cut it open and increase it's size in order to get more blood flow to his right lung. It sounds like they will sew a patch on the artery to enlarge it. They are also planning to close his ASD, the hole they put in between the two atriums of his heart. The ASD is what has made his sats lower (ie bluer blood) over the years. And then of course they will put in the new conduit and valve.

One interesting fact that came up in talking with the cardiologist was that J.J.'s heart is slightly rotated. It actually does vaguely ring a bell now but we had forgotten or hadn't quite realized that he has a bit of a sideways heart!

The ENT doctor took a good look at the ears and decided not to put in tubes today. There was no fluid in there so he decided to see how he does without the tubes.

So one down, one to go. Tomorrow's a bigger day but he has done really well today. We are going home with the IV in, so hopefully it won't fall out and we'll avoid a poke tomorrow morning! They'll lock the IV, so we won't be tied to any lines or hauling a pump around or anything, just the little needle under a big sock! We'll keep you posted!

recovering with a lil ol Blues Clues

seriously!

J.J. is so excited to go to the hospital he has been begging to go today!! We have to keep telling him he has to wait until tomorrow. He loves going for a car ride in his pj's with mom and dad early in the am and playing with the toys at the hospital.... even though he can't eat/drink and has to do a few things he doesn't like, he's still stoked to go! (Getting weighed and starting an IV are his least favourite.) Hopefully he'll be this excited to go back two days in a row!! We've tried to explain things to him, don't think he really understands and pretty sure he doesn't get how he'll be feeling after he wakes up from surgery - hopefully he won't feel too ripped off! He's been practicing squeezing his Canucks pillow to his chest and coughing (he'll have to do that for physio when recovering)... it's really cute! We have some fun stuff planned for when he is recovering so hopefully that will compensate for feeling groggy and sore.

actually

it sounds like J.J.'s slated for 9:30 for the cath on Monday, we'll be going over to the hospital for 8.

met the surgeon

On Wednesday we were at the hospital for 7 or 8 hours for our pre-admitting visit. It was a long day but J.J. had lots of fun at least! We met with the anesthetist, surgeon, nurse, play therapist, physiotherapist, nurse educator, had a chest xray and also met with the ENT doctor. (On Monday when J.J. has his heart cath they're going to put his ear tubes back in as they fell out.)

We'll be there most of the day on Monday for the heart cath, he'll probably go under around 10:30 am. We have to stay in the recovery room for 4 hours then hopefully we can leave with an IV in when we take him home so that they won't have to start a new IV the next morning.

We go in for 6:30 on Tues am, J.J.'s open heart surgery is scheduled for 7:45. The surgeon was very confident that this will be much lower risk than when J.J. was a baby. We found out that even though he'll be on the heart and lung machine he won't have his heart stopped for this surgery so that lowers a lot of the risks. The surgery will probably take about 5 hours.

We found out that they are doing early extubations now (taking kids off of the breathing machine as soon as possible) which means that the kids can't be as heavily sedated in the ICU. They will still manage the pain but J.J. will be a little more awake (whereas before the kids were 'paralyzed'). That will be different having him more aware in the ICU and we will try to have someone with him around the clock if we can.

If everything goes well, the best-case scenario would be: in the ICU for 2-3 days then up on the ward for 5-7 days. On the ward we have our own room and one of us will sleep over with him. Hopefully we can spend a fair bit of time with Jackie once we're on the ward as they have a fun playroom and we'll watch some movies in our room etc.

It's looking good to go in as scheduled, they haven't had a cancellation for cardiac surgery for 1 1/2 months

Now to get ready! A few things to buy, get packed, clean up the house....

Thanks everyone for your encouragement and prayers.

A little background

J.J. was born in 2003 with some heart defects: tetralogy of fallot and an absent pulmonary valve. He had closed heart surgery at 5 days old, then open heart at 3 months old. He spent his first 5 months in the ICU at BC Children's where he was on a ventilator (breathing machine) for 3 months. After his open heart, he was on life support (ECLS) for 4 days. He was on oxygen and an NG feeding tube until he was one. We were told he would need his pulmonary valve replaced between 2-4 years old (it's from a cow and doesn't grow with him). It's great that the valve lasted until he was 6, but now it's time for a new one! He will be getting new valve and conduit.

(click here if you a little more info about valves)

Scheduled Dates

Hi everyone, J.J.'s dates are:

Mon July 20th in the am: Heart catheterization (incision in leg/groin, wire inserted through vein, up to his heart. This is to get some more info prior to surgery.)

Tues July 21st: Open-heart surgery