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.