Pictures as Promised

 Pictures from Tyson's 4th Birthday Party...

Teagan, Jesse in back, Alex, Levi, Timmy, and Tyson enjoying some cupcakes.

Presents time!  A SpiderMan puzzle from Alex.

Teagan and Tyson trying to read the card...

Opening presents from Grandpa and Grandma Spanninga

SpiderMan was definitely a dominant theme!

Opening gifts from Grandpa and Grandma Kottelenberg, but posing for a web-slinging picture first!

Miss Addisyn Faith was grumpy, so Grandpa Spanninga keeps her calm by whispering soft, sweet words in her ear.  I don't know what he told her, but she was listening very intently.

 Our Visit to Sick Kids on Wednesday, November 28, 2012

Tyson playing video games with Daddy as he awaits his ECHO

For the first time, it was Brian's turn to lay with Tyson during his ECHO while I got to visit with some 4D friends.

Tyson was not very happy that I was leaving him.  He was pretty uncertain of what was happening that day.  I think it might have been because usually my Mom comes along to the ECHO appts, and Brian comes along when Tyson needs "work" done (pre-op, surgeries, or heart caths.) I think Tyson didn't trust the situation because Brian came along this time.  He was very cautious all day long.  He's usually pretty chipper and happy with his Sick Kids friends.

Getting checked out by Cardiac Nurse Stephanie, who he's normally very comfortable with.  You can see by his face that he was protesting her exam.

It wouldn't be a Sick Kids trip without a visit to Mickey Mouse.  I'll never forget when we were talking to Tyson about his wish from the Make A Wish Foundation...When we asked him if he knew where Mickey Mouse lived, he said, "Yeah, at Sick Kids."  (Like duh, Mom.  I see him there all the time!)  We're so excited that in February, he'll get to see where Mickey Mouse really lives!!!!

Miss Addisyn Faith being cheeky as ever! 

Tyson had to have some unexpected bloodwork done.  The DVD player was a huge distraction.

Cardiologist Appt November 28

Yesterday was Tyson's appointment at Sick Kids for an ECHO, ECG, and cardiology clinic.  Everything went peachy :)  His ECHO and ECG remain unchanged from last time in June.  It's always good to hear when there are no new surprises!

I brought up the concern about Tyson sleeping so much at nights.  It started around the time he had his last bout of pneumonia in June.  When it continued afterwards, we passed it off as him taking a while to overcome the pneumonia.  When it continued throughout the summer, we thought it was due to him being outside for long hours during the day being active with his older siblings.  But now with fall here and he is not as active, he is continuing to sleep 13-14 hours every night.  We were starting to get concerned that his heart may be slowing down.  But according to the ECHO and ECG, everything is as good as it can be for him, with no new changes.  The mitral valve is still leaking mildy, and his Fontan circulation is still a little 'off' but as McCrindle says, "It seems to be working for him."  The ECHO report actually said there were no obstructions in the pulmonary veins but McCrindle snickered and said, 'You and I both know *that's* not true!"  LOL

Anyway, to be on the safe side, Dr McCrindle ordered some blood work to make sure there's nothing wrong with any of his other levels that could be causing the fatigue.  Tyson was very angry at me as we walked down to the lab for bloodwork. He scowled and protested, "You LIED to me Mom!" because I had been telling him all day that there would be no needles at today's visits.  Ooooops.  I guess I shouldn't make promises that I'm not sure I can keep.  Since bloodwork was done at 5:30pm, we didn't find out results right away.  But I heard from Dr McCrindle this morning that all the numbers came back normal, and Tyson is just fine.  So we continue to keep a close eye on him, let him sleep as long as he needs to, and we don't need to go back to Sick Kids again for SIX MONTHS!  Yay!

We talked a bit about some precautions that we need to be aware of in preparation for when Tyson starts Kindergarten in September.  Nothing new, just some things to think about and talk about with his teacher and the other staff members.  All in due time. 

Once again, we appreciate prayers for a healthy winter for Tyson.  He was approved for RSV needles again this winter.  We'd appreciate prayers for that too, that Tyson doesn't get too anxious about the needles.  He *hates* needles, and the RSV ones are big and juicy.  Because of his size he needs to have 3 in one visit (multiply that by 6 months of the year....) but I am hoping we can talk the nurse into using a slightly bigger needle and dividing the serum up into two needles instead of 3.  That would be far less trauma for him.

That's the update for this time.  I hope to post pics of our Sick Kids visit sometime within the next few days, so come back soon and check them out.

Melissa

Our Gift from God turns FOUR!

Take a minute and scroll back up to the picture at the top of your screen.....come on, just do it! 


 I'll be here waiting for you when you get back.......

Isn't that the SWEETEST face you've ever seen??????

I'm sitting here staring at this picture of my beautiful little boy with huge tears in me eyes.  Happy tears of course, because today Tyson turns FOUR YEARS OLD!  We are so thankful that God has blessed this little warrior with four full years of LIFE!   Oh, how God has blessed and enriched our lives by giving us this spunky boy!  Not only has God taught us so much along the way, but Tyson has also taught us many things.  He has taught us so much about being brave, staying strong, persevering to the end and *never* giving up, and he absolutely is my hero.  Most people never get to meet their hero in their entire lifetime.  I was blessed to have given birth to mine.  Friday, November 21, 2008.  A day that changed our lives forever.  The day I became a heart Mom and we all became a heart family. 

Most of us, when we celebrate our birthday, or the birthday of one of our children, we spend a few minutes reflecting on the past year and all the exciting things that have happened in the year gone past.  But on Tyson's birthday, we are not just celebrating another year.  We are celebrating his entire LIFE!  Thank-you God, for Tyson's life!  We love his life!  We wouldn't trade it for the world!  As much as it has had its ups and downs, the ups are GREAT! 

Tyson was able to have his first birthday party with friends yesterday.  We invited all the boys in his grade and a few other special friends too.  Not everyone could make it, which we expected given the time of year with all the colds and flus.  We politely reminded everybody on the invitation that only healthy children were welcome :)

It was a fun morning, with cupcakes and candy, presents and Pin the Tail on the Donkey, and it was small enough group that Tyson didn't get too overwhelmed.  Thank-you to those who were able to come out and celebrate with us.  It meant a lot to Tyson and to me too.  And to those of you who couldn't make it, I hope you feel better soon and that you can come next year. 

Next week Wednesday, Nov 28 is the much-anticipated "Sick Kids Day."  Tyson is having another full scale ECHO, ECG, and a check-up with the cardiology team.  It's *always* nerve-wracking for me.  I'm always plagued with the "what ifs."  And the drive downtown TO always makes me nervous, but thankfully this time Brian will be driving because he is coming with me this time.  Maybe I will have a better sleep the night before too :) 
 Many prayers for a good birthday, another year of heart health, and a good check-up next week!   

Four Healthy Months!

Brian and I were reflecting again the other day, and we realized that since Tyson's last hospitalization in June, he has been a picture of good health!  Whenever someone asks us, "How's Tyson doing?" I always respond, "So far so good!"  We are so thankful for that, and continue to pray that the bugs stay far, far away!  Due to whooping cough going around our church and school, Tyson has been pretty cooped up since the beginning of September when school started. So far the whooping cough is staying away from us.  It has hit some families who are pretty close to us, and it has affected kids who sit right beside my kids in school or on the bus.  I pray for the health of these families too, that they can get through it and put it all behind them.  Being sick is never fun. 

Tyson saw the speech therapist in September, who said he won't need weekly speech therapy sessions at this time.  He continues to monitor Tyson's progress every 3-4 months, and we continue to work on certain language skills and letter pronunciations here at home.  Tyson is pretty receptive to practicing.  Although we think his lisp is really cute right now,  we won't think so if he's still talking like that as an adult ;)

We saw the respirologist in October and spoke about his asthma meds for the winter.  The plan is not to fix what isn't broken, and leave him on Pulmicort twice daily, Ventolin as needed, and Singulair once daily.  I did ask about increasing the dosage of ventolin, because sometimes when he is coughing badly, the ventolin every 4 hours won't always do the trick.  The problem with Tyson is, that an increased amount of ventolin will cause a racing heart.  Dr. Bikangaga says that if he isn't doing well on ventolin every 4 hours, he actually needs to be in the hospital.  

Starlight Children's Charity generously donated tickets for our whole family to go to Wonderland

From a cardiac perspective,  Tyson's O2 sats remain in the high 80s-low 90s and his colour has never looked better.  He has a crazy amount of energy most days.  For the most part, you'd never know he has only half a heart.  He does have the same amount of energy as most kids his age, but he doesn't have the stamina as others his age.  He can only go like crazy for about 10 minutes before he needs to sit down and take a break.  It's amazing how he knows when it's time to slow down. When he knows he's tired, he just plunks his butt down on the ground and takes a break, like it's perfectly normal to do so. 

He has been sleeping a lot lately, about 13 hours every night.  He literally drops into bed at night at 7:00pm and we never hear from him again until well after 8am!  This has me slightly concerned about how he's ever going to get to school on time next year, especially since he needs a nebulizer mask in the mornings, and he take forever to eat his breakfast!  Because we live so close to the busdriver, our kids get on the bus at 7:15 am and they don't get home until 4:45pm.  Oh boy, it's going to be a long, tiring day for him!  I can't even imagine what time he'll need to go to bed at night in order to get enough sleep for such a long school day.  

Most of the time, when a cardiac kid starts to sleep more often and has less energy, it is a reason for concern.  One of the first signs of heart failure is the body starts to show signs of tiring quicker and extreme fatigue.  Even though Tyson is sleeping longer these days, it could also be due to changes in the weather.  And we are not at all concerned about his energy levels!
 
On Thanksgiving weekend we enjoyed a hike through part of the Bruce Trail.  Tyson did well but the hike was very up and down, with lots of dips and valleys, so it was very hard for him to keep up.  Since the trail was too rough for a stroller, Brian hiked most of the trail with Addisyn in his arms, while Tyson rode most of the time on my brother Garth's shoulders.  Uncle Garth tried so hard to teach Tyson his colours as we followed the trees marked with either blue or white paint, but Tyson does not have the attention span for that kind of learning quite yet.  
 

We certainly try hard at home to keep him learning the things he needs to know before he goes to Kindergarten next year.  We are working on his shapes, colours, and starting to do some number and letter recognition.  It's not going so well, but the teacher in me won't give up :)  He is seen regularly by an infant-child-development worker and she is always giving me new ideas to try and new concepts to work on.  He gets assessed every few months and he doesn't seem to be too far behind.  Considering there was a time in his life we wondered if he would ever walk or talk, he's certainly come a long way!  

With his older sister in school full-time and his younger sister not old enough to play yet, Tyson has to occupy himself a little more.  He enjoys helping me in the kitchen baking or preparing dinner, and he *loves* a good snuggle on the couch with his Mom and a few library books.  During the day, he listens to CDs, enjoys listening to books on CD, he plays "spies" on me, he likes dressing up like SpiderMan, playing with Nerf guns, and any sport you can think of he loves.    When I need some quiet time for myself, he enjoys playing Wii or watching Backyardigans, Toopy & Binoo or Curious George. 
   

His appetite is starting to increase slowly.  He now weighs about 34 pounds, which is AMAZING given the fact that he burns more calories than an average kid. His daily dose of coumadin has been 3 mg for over a year and a half....with the exception of after he's been ill or is on antibiotics.  But for the past few months his INR levels have been slowly dropping, indicating that his dose needs to be adjusted due to him gaining weight and eating better.  This is always a very good sign!  We continue to monitor his INR levels at home with the Coagu-Chek and let me tell you how much Tyson and I LOVE this machine!  It is amazing!  We are so thankful to Cardiac Kids for donating this device to our family.  It saves us time going to the lab for bloodwork, and it sure does eliminate the anxiety that comes along with all those pokes.

Speaking of pokes....we got a call from the cardiology nurse yesterday.  Dr McCrindle feels that Tyson would benefit from having the monthly Synagis injections again this winter, to prevent a respiratory virus called RSV, which can be fatal in children with heart or lung conditions like Tyson's.  As a rule, the governement only covers the shots for high-risk infants (who have heart defects, or were born premature, etc.) up to the age of two.  The theory is that after their second birthday they are that much stronger and their lungs are likely mature enough to handle the RSV virus without requiring hospitalization.  Tyson is going to be four years old next month.  I'd love to think he would be strong enough to fight against the RSV virus if he were to catch it, but the call from Dr McCrindle's tells me otherwise.  The cardiologist makes a referral to Marilyn Cranis, and then Marilyn requests coverage from the government (I think it's ODSP that covers it...the injections are about $900 per shot!)   I hate the thought of having to poke Tyson again (and it's not just 1 little needle...we're talking 2-3 because of his size...last year I managed to beg them to use a bigger needle and put the entire solution into 2 needles instead of 3...there is NO way he's going to sit still enough for 3 needles!)  So that's 2 huge juicy needles per visit, once a month, for 6 months....all winter long....*shudder* I hate the idea of it, but I also hate the possibility of watching my son fight for his life in the Intensive Care Unit because of RSV.  So we do what we gotta do.  I don't know yet whether or not Tyson will be accepted for coverage and  part of me hopes he won't be accepted.  That would save us the anxiety of needles.  Maybe this year won't be so bad for him, because he doesn't go for bi-weekly blood work anymore.  Yay for Caogu-Chek!

I was just saying to Brian the other day that Tyson seems to be growing up all of a sudden.  He is starting to listen better at home finally and we can carry on more adult-like conversations with him.  When we say, "Tyson it's time for your mask," he doesn't kick and scream and put up a fight but usually comes right away when we tell him. Maybe because he is more tired, he actually enjoys some down time before bed.  Or maybe because he's getting older and he's growing up and the terrible two stage is finally leaving him....he's almost 4.   He is able to understand logic and reason better now.  He used to protest everything but he does this a lot less these days, and all around he seems much happier.  He's experiencing less anxiety in social situations, and he seems to be more socially mature.  (Except the occasional burp here and there! ;)  We do know from experience that when he is healthy, he is happy. We are so glad that he is getting easier to deal with.  He sure was a handful at times and I'm so glad that his difficult nature is mostly in the past.  *big sigh of relief*

We go back to Sick Kids again on November 28, for his full Echo, ECG, the whole nine yards.  

We are thanking God for good health for the past four months, and we continue to pray that Tyson remains healthy and well all winter long.  The longer he stays healthy and can fight off colds/flus without being hospitalized, the farther away we are from transplant talk!   I'd love to put the t-word far far behind us.  Please join us in praying for a healthy winter, that Tyson can continue to grow and thrive, and that he can remain healthy at home with his family, and especially that whooping cough stays far, far away!  (Or as Tyson calls it: woofing cough.) 

Weekend with the Camerons

 I just LOVE doing happy updates on Tyson's blog!  His blog was primarily set up to keep everyone informed on Tyson's progress as he stayed in the hospital, surgery updates, cardiologist appointment reports, matters for prayer and concern, etc.  It is rare that I get on the computer just to type about joyous events, but with thanksgiving we are able to report good news too.  And I am praying that I get to write these kind of updates more frequently!

During the last week of August, we spent a weekend up in Kawartha Lakes with a lovely couple Don and Nancy Cameron and their family, at their cottage on Clear Lake.  The Camerons are sponsors and supporters of Cardiac Kids, a volunteer group which seeks to raise funds for children with Congenital Heart Defects (CHD,) in support of Sick Kids Foundation.  The Camerons have two daughters, Joanne and Chrissie.  Chrissie was born with a severe heart condition called Tetralogy of Fallot.  She was born in 1978 and was undiagnosed for over a year before having her first open heart surgery, which she also had at Toronto's Hospital for Sick Children.  Chrissie and the Cameron family lived their lives in much the same way as we do, with surgery after surgery, and the doors to Sick Kids Hospital always revolving around and around, as they went in and out, in and out.  Chrissie was married for almost four years to a wonderful man named Michael. Tragically last summer, after complications following a spinal surgery, her heart unexpectedly gave up, and she lost her battle with CHDs and passed away.  Families with children who have severe heart problems are warned about things like this, that it can happen at any time without any explanation, but nothing can truly prepare you for the unexpected loss of a child.   We are so sorry for their loss and would have loved to have met Chrissie.  It is through Chrissie's loss that we were able to meet this wonderful, loving family the Camerons.

The Camerons wanted to do something for other "heart families" who are going through what they have gone through.  So they contacted Cardiac Kids and invited select families to be their guests at their cottage in the Kawartha Lakes.  Our family was invited to join them for a weekend in August, so we spent from Thursday to Sunday at the Camerons' cottage with them, and did we ever enjoy our time away! 

Nancy and Don Cameron

Don and Nancy Cameron are a lovely couple with warm and caring hearts.  We immediately felt welcome in their home, and it didn't take long for the kids to get used to cottage life.  Late nights and lazy mornings, their morning cup of chocolate milk, some early morning fishing, a hearty breakfast, some time in the lake swimming, boating, tubing, more fishing, a delicious lunch, more time in the lake paddle boating, more tubing, more fishing, some t-ball, hockey, more fishing, another scumptious home-cooked dinner, and then some more fishing.  We enjoyed a weekend full of activity, relaxing, and enjoying family life.  And, oh yeah, did I mention tubing and fishing? ;P

There was a lot of laughter, and even a few tears as we shared our stories and our concerns for the future. Over-all was one of the most relaxing times away we've had in a very long time.  Not only was this trip a complimentary, all-inclusive vacation, but Don and Nancy were our hosts for the entire weekend, so I didn't even have to cook!  The food was scrumptious, the company was great, and memories were certainly made.  

 

Don helping Kenya get her fishing rod ready

Braden, Tyson, and Kenya waiting patiently for their large-mouth bass

Braden's Big Catch

Merrick's Big Catch

Of course, what would a vacation be without hockey?

And of course some mask time every morning and night

Addisyn was pretty good all weekend.  She mainly sat on her bum and watched all the activity around her.

Me "helping" Nancy in the kitchen

I love how geeky Tyson looks in the picture!

The hooligans hanging out on the tube one night during a campfire

Kenya and Olivia, the Camerons' grand-daughter

Mom and Dad take a turn on the tube....I was happy to have Kenya and Tyson along so I would be sure Don didn't go too fast ;)

Camerons' grand-children, Olivia and Cameron, with Tyson

Trying to figure out the paddle boat

Tyson and me with the Cameron family:  Nancy & Don, Joanne & Jeff with their children Cameron & Olivia, and Chrissie's husband Mike

THANK-YOU 

DON AND NANCY CAMERON 

AND FAMILY!

A Great Summer So Far

Since Tyson's last hospital stay from pneumonia in June, he has been doing great!  We have continued on with his nebulizer treatments twice a day.  He's on the ventolin and pulmicort twice a day, no matter what, because that's what his body seems to need at this time.  Whenever we take him off the ventolin completely he seems to get really grumpy and doesn't sleep well either.  So we will continue with this treatment plan throughout the whole summer and fall, and also consult with the respirologist again when he sees him in October.  

We just came home from our camping trip to Arrowhead Provincial Park in Huntsville.  It was one of our best holidays ever.  Not only did we have a great time, the weather was great, the company was great, and best of all:  Tyson stayed healthy and far away from any hospitals!  (During the past 2 years, Tyson visited the emergency rooms of 3 different hospitals while we were camping.)

Tyson really enjoyed this camping trip, playing with two friends who are both the same age as him.  His energy levels amazed both me and Brian!  One morning we went for a 3 kilometer hike along a rocky trail with lots of tree roots, big hills and small hills, and the air was thick with humidity.  We were not expecting him to make it to the end of the hike, but he did it!  He pretty much ran the first half (not quite keeping up with the others his age,) but did slow down the second half.  It helped that he was in a great mood so there was nothing stopping him.  We did stop several times for a quick break and he was huffing and puffing by the end of it, and his face was beet red, but he did it!  No piggy back rides, stroller or wagon rides, just Tyson.  Walking.  The whole way. 

Taking a quick rest on our long hike

Smile!  I did it! 

Arrowhead is a really beautiful park!  The campground is established in the middle of a huge bush, so the sites are very private with lots and lots of trees.  There were lots of trails to hike or bike, and the kids really enjoyed the waterfalls.  Since the water levels were so low this year, everyone was able to walk along the falls and the kids could even play right in the falls.  With Tyson being on a blood thinner we worried about him falling on the slippery rocks, so we held his hand tightly the entire time. He really enjoyed cooling off in
                                                                                                        the water.

Braden, Merrick, Amy and Kenya in the back;  Cole in the front.

 

Enjoying the beach with Mom and Addisyn

Tyson also had a mask buddy on this camping trip.  Kevin also has asthma so since they both needed masks in the morning and at night, they often had a "mask party" together where they played games together or read books together.  Teagan also joined us on the mask parties; she was the only one really excited about it ;)  It was cute.

Tyson did so well during this trip.  For the most part, he was happy and healthy and for that we are so thankful!  One night when he was looking particularly pink, I checked his sats and he was satting 94!   I can't believe his sats can be that high given his heart and lung status.  God sure is looking after our little heart warrior!

Overall it was an enjoyable and relaxing trip.  Every year as the kids get older, camping gets easier and easier.  It was different again this year having a newborn along with us, but she is a pretty easy-going baby and was no trouble at all.  We are so grateful to have been able to spend this time away with our family and friends.  The memories that were made on this trip will be something we hold onto for a very long time.  We just hope and pray that Tyson can enjoy these types of events for many more years to come.

Blessed Beyond Measure

Tyson sporting his new MedicAlert bracelet

Over the years of being Tyson's Mom, I have sat back a number of times to reflect on how much we are incredibly *blessed.*  It brings tears to my eyes when we think about how blessed we are!  It's never far from our minds how much Tyson has been through in his short life, and how much God has blessed him with strength and perseverance to win the battle he's been fighting his whole life.  We reflect on God's goodness and grace in giving Brian and I what we need to care for this special little man with his special little heart.  And how much He's provided for our other children dealing with the emotional implications of having a medically fragile little brother.  As a family, we are so thankful for everything we've learned in the process, how our faith has grown, how our marriage has been strengthened, how much the love we have as a family has deepened.  Here we have this little boy, whose odds of survival were slim to say the least, and yet here he is!  Three and a half years old!  And doing normal things that other three year olds would be doing.  He plays outside, climbs around on our tree fort, jumps on a trampoline, swims in the pool, rides a bike (or tries to...) kicks a soccer ball around with his brothers, puts on a baseball glove and plays 500-up with his family.  It's just amazing to see God's grace to this little boy He's given us to care for.

For the past two weeks Tyson and our other children have been involved in swimming lessons at the Shelburne Rec Centre.  I was so nervous about how Tyson would behave.  When he has his mind made up about something, he sure makes it known to the whole world!  I was able to speak with the swimming instructors beforehand, to give them a little heads-up about Tyson's condition and also his moods/behaviour.  His swimming instructor Caely was *amazing* with him.  Not only did she get him excited about swimming, she also didn't put up with his attitude when he didn't get his way.  But she was gentle about it.  She was friendly and loving, and you could really tell she loves her job.  Yesterday was the last lesson and I made a special point to commend Caely on how good she was with Tyson, and as I was thanking her I started to get very choked up.  And then later I asked myself, "Why did I get choked up about this?"  I think it's because Tyson is doing things we never imagined he'd be able to do.  I never envisioned that he'd be in swimming lessons like other healthy children his age.  We are so thankful that he was able to experience this along with our other children.

Not only do we feel blessed by God's grace and mercy to us as a family, but we also have been so blessed financially as well.  When one has a child with health concerns, there are so many medical expenses that come along with that, even though Canada has one of the best health care systems in the world.  We have never once seen a bill from any of Tyson's open-heart surgeries, heart catheterizations, echocardiograms, ECGs, EEGs, chest x-rays, lab work, hospital stays...the list goes on and on.  The Ontario Health Insurance Plan covers all these expenses.  And there are always other non-medical costs like hospital parking, meals, lodging, gas expenses... that we pay out of pocket.  We have been blessed by foundations such as the Jennifer Ashleigh Children's Charity who have helped us cover gas and lodging expenses in the past.  Ronald McDonald House has been a home to us during three out of eight of Tyson's lengthy hospital stays.  We're also thankful for the ACSD program and the Ontario Disability Support Program (ODSP) which covers all of Tyson's medication and dental expenses.  Without organizations like these, the extra expenses incurred from having a special needs child would certainly become burdensome! Cardiac Kids even gifted Tyson with a fancy CoaguChek device so we can check his INR levels at home!

We've also been so blessed by our church community when we were in times of financial need.  There have been times when Tyson is hospitalized that Brian has to take some time off work due to the nature of the illness, or because he's had surgeries, procedures, etc...and it is a joyous and humbling experience to find an anonymous donation from in our church mailbox from some of our brothers and sisters in the Lord.  (Thank-you for those gifts, you know who you are!)  Friends will give us gas or food vouchers to cover the costs of traveling and being in the hospital, others will help out by taking our older kids while we stay with Tyson.  We are so so so blessed!

Now all he needs is a tv in his room and he's all set ;)

The whole reason for my blog post today was because we are so thankful for a new bed that Tyson has received as a gift from one of my Mom's clients.  Tyson is so excited about this bed, I just had to do a post about it and post pictures.  This client of my Mom's had a hospital bed that he was no longer using because his wife had passed away, and he had been trying to sell it to a good home.   When he heard about a three year old boy who could benefit from having a bed that could elevate his lungs and help during his frequent pneumonias, it didn't take long for him to offer the bed to Tyson.  Tyson went along with Brian to pick up the bed from his home, so my Mom's client was able to meet the boy who my Mom talks about so much.  Tyson is so happy with his new bed.  He loves the remote control and bringing the bed up and down, up and down.  I'm sure it's a novelty right now, but he gets to choose how high or low he wants to sleep and then we put away the remote for the night.  What better way to help keep his heart and lungs elevated during the winter months when Tyson so often suffers from colds and flus!  It is not something we would have thought to buy ourselves, since these beds are a few thousand dollars! But now that we have it, we are excited about how this bed could really help Tyson when he struggles in the winter.  Again, we are *SO* blessed!

Tyson also got his new MedicAlert bracelet in the mail this week.  It is actually pretty cute on him.  We finally decided on what to inscribe on the underside of the bracelet, which was not an easy feat given the limited amount of spaces allowed on the bracelet and Tyson's multiple health concerns/medications!  

Fontan

Complex CHDs:

Hypoplastic Right 

Heart Syn./asthma
 anticoagulated

In consultation with Tyson's cardiologist, the medical professionals at MedicAlert, and a very friendly paramedic ;) we finally decided on the inscription to put on the bracelet.  You can click on the pic to enlarge it to see the inscription.

In layman's terms:  basically this means that he has complex congenital heart defects (CHDs) involving a Hypoplastic Right ventricle, he's had the Fontan surgery, he has asthma, and he's on a blood thinner. 

All is well right now.  Tyson has recovered nicely from his pneumonia and we will NOT be taking him off his asthma meds anytime soon.  He sees Dr. Murphy again on Monday and I'm sure he will be happy with Tyson's progress.

Our Little Heart Warrior Just Keeps on Fighting!

Yesterday's appointment at Sick Kids went very well.  Tyson's ECHO looked good, unchanged from last time!  This is reason for great rejoicing!  His chest x-ray and ECG also looked very good.  Tyson also had blood work done, which showed his albumin levels are back to normal.  We breathe a sigh of relief on this too, since low albumin levels could mean the start of PLE.  Dr McCrindle doesn't think he would be of greater risk of developing PLE even though his levels were low for a while, since he believes it was the pneumonia infection that caused everything to go out of whack.

Tyson's INR level is still high, so we have to hold his coumadin for tonight.  We have the pleasure and luxury of being able to check his INR level from home now, since his CoaguChek machine was delivered to us yesterday and the thrombosis nurse trained me on how to use it!  (It is fairly similar to what a diabetic uses to check his glucose levels.)  It is very simple to use, and we're thankful that we can keep a very close eye on Tyson's INR levels at home. His level has been changing over the course of the past week due to the infection and antibiotics, and it can take a bit to get back on the right dose of coumadin.  Having the CoaguChek machine eliminates the need for regular blood-work to get him back on track (usually every 3 days once he's been sick....and bi-weekly once his dose is adjusted correctly again.)  Tyson is happy he doesn't need to have so many needles any more :)

 ♥ THANK-YOU SO MUCH TO MEGHAN AND JEFF FROM CARDIAC KIDS FOR FUNDING THIS FOR US!  WE ARE EVER SO GRATEFUL! ♥

The appointment with Dr McCrindle also went well.  Tyson was in a very good mood and he seems to be back to his normal self again.  He has also been eating better too, which is great because mealtimes have always been a battle with him, and Brian and I were about to give up.  His appetite yesterday was pretty crazy, in a good way!  His heart rate has worked its way back down again (indicating that he is getting over the infection nicely and is no longer dehydrated) and his sats are working their way back up again.  90 % today!

We're so thankful for the positive reports we could receive yesterday, and relieved that most of the changes in his blood work and chest x-rays were "just" pneumonia.

God is so good!  Through His strength, Tyson keeps on fighting his battle.  Way to fight, Mr. T, our brave little heart warrior!

Home Sweet Home!

Tyson was discharged from the hospital today at lunchtime!  He did really well overnight without oxygen.  He did de-sat a few times but I got up and rolled him over to lay on his other side and his saturations improved.
We are so happy to have him home again!  He has quite the markings on his arm from the IV being in so long.  The nurse who inserted the IV didn't put any gauze or padding underneath at all, and the plastic caps were taped directly onto his skin.  I really didn't think of it at the time either, and was honestly not thinking that the IV would stay in so long.  But they left quite the cuts on the inside of his arm, and they are red and swollen.  Poor little guy, like he needs any more scars!  LOL  I will have to remember for next time that they should put padding underneath before taping his IV up so securely. 

Thank-you all for your constant expressions of love and support, but most of all we're thankful for your prayers! 

Tyson said during dinner tonight, "I am glad to be home."  ♥

We go to Sick Kids on Wednesday to have him assessed there by his cardiologist, and various other tests.  We will update again after that time.

Wondering if He's Coming Home Soon

Brian stayed at the hospital with Tyson last night while I went home with our other kids.  When we left the hospital last night Tyson had a brief episode of desaturations in the high 70s, but they did slowly come back up again to the low 80s.  After Brian and I last spoke last night before bed, Tyson was comfortable and sitting in the low 80s.  

But this morning Brian called me and said that Tyson had to be put back on O2 at about midnight.   He de-satted into the low 70s, even as low as 68-69 at about 11:30pm.  So Brian adjusted Tyson's positioning, turning him from his back, to his left side, to his right side in hopes that it was just a "fluke."  But after half an hour or so to now avail, he had to get the nurse and the respiratory therapist also came in.  All agreed that Tyson needed the O2 back on again to help him get through the night.  They were able to turn it off again by 7am but we're pretty certain that he won't be coming home yet today.  It seems like Tyson has been doing worse on his right side than on his left side.  Perhaps because his "good lung" is the one with pneumonia so when he's on his right side, the right lung is compressed and his "bad lung" (the left one - the one with pulmonary vein problems and less blood flow) is having to work too hard?  We're not sure.  This is just Brian's and my theory. 

I am really struggling with the emotional part of this  hospital stay.  For most healthy children, if they are hospitalized due to pneumonia, parents can get anxious and wonder when their child is coming home.  But each time Tyson is hospitalized, Brian and I wonder IF he is coming home.  In the back of our minds there is always that nasty, lingering question:  is this the beginning of heart failure?  Is this how everything is going to go down?  

I am writing my thoughts down today because I am having a hard time with things, and I may regret publicly displaying my thoughts and emotions later today, but I'm just having a bad day.  We're all allowed to have bad days, aren't we?  I've been praying so hard that God will bless me with more patience and trust than we've already been given but I have to be honest, it can be really tough sometimes.  I think in part it's because Brian isn't here with me right now to keep me positive and grounded.  While everyone else is going on with their merry life, going to weddings, and graduation dinners, and potlucks and golf tournaments, we are dealing with our son who's sick again, wondering not only when he's going to pull through and come home, but IF he's going to pull through and come home.  Having only half a heart means that it could decide to quit on him at any given moment.   It's tough to swallow that kind of prognosis at times, and yet at the same time we are so thankful and blessed for all the good times we have enjoyed over the past three and a half years.

I feel bad for Brian too, who should be out enjoying a round of golf today in the beautiful sunshine, and instead he's stuck in a hospital room with his three year old son.  Today we should be out enjoying the sunshine, working in the gardens, watching our kids splash in the pool, but instead I'm trying to get caught up on the 7 loads of laundry that have piled up over the week of me being away.  The house is upside down because we've been in and out all week long, running here and juggling there, with no time to clean up the mess that happens in the meantime. 

At the same time that I write this, I can hardly complain and I feel bad for feeling sad, because we've been so blessed with family and friends who are always so willing to help out where needed.  The three oldest have spent a few nights at friend's houses so they could continue on with the school routine.  They are expensive to feed!  My Mom has been great too, visiting us in the hospital often, so the days aren't so long.  And she even stayed overnight twice this week so that Brian and I could go home and actually have time to talk to each other.  One parent needs to stay with Tyson, and the other parents needs to stay with the other kids, so juggling can be difficult and Brian and I actually see very little of each other.   And then add into the mix a nursing baby who isn't sleeping that great in a pack n' play in the hospital and just needs to be home in her own bed.  So it is nice to have Tyson here in Orangeville hospital, as opposed to Sick Kids in Toronto, to make all the juggling a little easier.  Even still, it's not always "easy" and then there's the issue of dinner.  Who's cooking what and when?  

I will update more later.  Brian said Dr. Murphy just came in to talk to him again about the plan.  Brian is going to ask about an oxygen concentrator at home.  If it's just while he sleeps that he needs the help, maybe he can go home on oxygen?  During the days Tyson sats 82-84 but what about when he's up and active and playing?  Right now he's too tired to even make it to the bathroom on his own and usually de-sats a bit once he gets back into bed.  Ok, will update again later. 

1:30pm
Tyson is definitely staying at least one more night.  During his nap today they are going to see if laying him on one side versus the other makes a difference.  I wish them much strength with that, he does NOT like being woken up from his nap! 
Dr Murphy also says we should cut back on the amount of ventolin masks Tyson is having, as his heart rate has jumped up in the past day or so.  Today he's sitting in the 140s and usually when he's well it is in the 90s.  Ventolin does definitely increase his heart rate, but now that the pneumonia appears to be clearing up, we have to make sure his heart isn't too stressed either.  
Once my laundry is all dry, folded, and put away, we are heading out the door to switch shifts.  Brian will come home with the kids and I will stay overnight with Tyson and Addisyn.  (Addisyn does love her own bed!  She slept till 8am this morning in her crib, and had a 2 hour nap this morning :)  Hope we can all get home and back to normal soon. 

On the home-stretch

It was another good day!  Dr Murphy turned the oxygen off at about 10am and it's been off ever since!  I was a little freaked and stressed right before I left to go home this evening, as Tyson's sats dropped to the 70s for about 20 minutes.  We fidgeted with his sats probe (the one that attaches to his finger) and the nurse brought us a brand new one and that seemed to make a bit of a difference.  They slowly began to climb back up.  Brian just texted me and said they are staying around 84 right now.  I am hopeful that they will remain in the 80s for the whole night, because that means he can go home in the morning!  During his nap this afternoon the sats were steady at 83-84.

His INR level is slowly climbing back up (1.8 this morning) and his weight is slowly going back down again (15.2 kg...closer to his normal weight again.)  He is still coughing but it is loosening up and not sounding as severe. 

This morning when Dr Murphy came in to assess Tyson, I asked him straight-up what he thought the lower sats and cough are a result of:  lung infection or heart failure.  I told him to tell me his honest opinion based on his understanding of all the tests so far.  He believes that the infection is what caused the lower sats and cough, and that the infection also could have caused his INR level to be way off.  

Tyson's chest x-ray from this morning showed a big improvement but there is still a fair amount of fluid there, particularly in the right lung.  Dr Murphy said that if it was heart failure the fluid would be on both sides of his chest.  However, having to work hard to fight the infection, his heart was definitely put under stress and that could be why his belly became distended and his body retained the fluids.  But Dr Murphy was also clear that he is concerned about the low protein levels in Tyson's blood (albumin levels) and that this could a slow start to something called Protein Losing Enteropothy (PLE.) It is a common side-effect in children who've had the Fontan (primarily in those who've had a fenestration closure - Tyson's is still open) that causes the body to lose proteins.  It results in a very hard, distended stomache, very loose stools, and requires a very strict diet to manage the symptoms.  It is a very inconvenient disease with absolutely no known cure.  I'm not letting my mind get too far ahead on this, since Tyson's protein levels are low but not dangerously low.  Perhaps there is something we can do to slow down decrease in albumin levels? 

The cardiology clinic from Sick Kids called today.  Tyson's ECHO is scheduled for 10:30am on Wednesday June 27.  He will also have bloodwork again (INR level, albumin, white blood cells, hemoglobin) as well as chest x-rays, and ECG, and an appointment with Dr McCrindle.  The ECHO is the most important test at this time.  This will tell us if Tyson's heart function has decreased over the last 3 months and will let us know if he needs to continue with the heart meds.   We will be taking with us a disc with Tyson's recent x-rays on it, as well as all the lab results of the past few days.  Hopefully we can get this all figured out and put all the pieces together.

So if all goes well overnight tonight, my next blog post might be announcing that Tyson is home!  Please pray for this for him. 

Another Good Day :)

Tyson had another good day and he was in a great, silly mood for most of the day.  He is resting well at nights and has a long nap in the afternoons too.

Today his INR level was a little low so we have adjusted his coumadin dose again and hope to get it right soon.  He remains on half a litre - quarter of a litre of oxygen to help him maintain sats in the 80s.  Once he can go through the night with no oxygen, I'm sure we will be on our way home.  (The earliest we can say would be Saturday as he is still on O2 right now.)

For now the IV line remains in as long as it stays in, (I was hoping it would "pop" out when he had his bath this morning but no such luck!) and he continues to get antibiotics through the IV as well as orally.  He is tolerating his heart medication well (the diuretic to help keep fluids away from his heart) and he says it tastes like Mentos :)  

He was in a very good mood all of today and we can see his personality coming back slowly.  As much as he is irritable and ornery when he's sick, we soon forget how difficult and challenging he can be once he starts to get back to his usual goofy self.

Please continue to keep him in your prayers, and pray that the wet cough goes away soon.  It'd be nice to know that this is a result of lingering pneumonia and not the start of a very difficult road for him.  

Mel:)

Things that Make You Go 'Huh.'

 Tyson had a really good night last night.  He slept quite well.  As soon as I saw him in the morning I could tell that the swelling in his face had gone done markedly.  His morning weight was 15.6 kg.  Much closer to normal again!  He is also peeing normally again too and his belly isn't as big or hard as it was yesterday.  I knew today was going to be a good day because as soon as he opened his eyes and saw me, I got a big smile :)

Dr. Murphy saw Tyson again in the morning and discussed the day's plans with us.  He consulted with the cardiology department at Sick Kids last night, and they were actually surprised that Tyson hadn't made his way there yet as they were all expecting to see him at  Sick Kids emerg!  After Dr Murphy discussed Tyson's symptoms, the treatment course, and a lot of his blood test results, they decided it would be best for Tyson to be transferred to Sick Kids to have an echo, ECG, chest x-ray, and more blood work down there just to make sure the low oxygen saturations and wet cough are not a result of heart failure.  Dr Murphy said that some of the results from the bloodwork were peculiar and certain things seemed "off" to him.  We have to be certain that this issue is not heart-related and that his wet cough and low sats aren't a result of heart failure.  Here is a list of things that make us go "huh."

 #1.  Tyson's white blood cell count has been normal.  Usually with infection, the wbc levels elevate to fight infection.
#2.  Tyson did not present with a fever at any time during this cold, at home or in hospital.  Every other time Tyson catches pneumonia, he gets a fever at some point throughout to indicate that his body is fighting infection.
#3. Tyson's INR level was waaaay too high and when they tested certain levels in his liver (the liver helps regulate INR levels) they also appeared normal.  His diet can sometimes affect his INR levels, but he was eating pretty much normally for the duration of this cold.
#4. Tyson's chest x-ray from Monday to Tuesday did look slightly worse, and his body began to retain fluids until he was given a dose of Lasix to help him pee.  His tummy was distended for most of Tuesday and he also had watery bowels (sometimes an indication that his body is losing proteins.  PLE is a common side effect of kids with half a heart.)  The blood work taken yesterday did show some decrease in his protein levels.

Taking all these factors into consideration, we have to be certain that it's not a heart related issue and the only way to do that is for him to have an echo done at Sick Kids to compare to his last echo.  So we waited AAAAAALLLLLLLL day for Sick Kids to phone Dr Murphy back as to the course of action.  When they did finally re-connect, Dr Murphy was able to speak with Dr McCrindle directly.  Dr McCrindle (Tyson's primary cardiologist) feels that Tyson can continue healing at Headwaters, but they would like to see him in cardiology clinic and get an echo done next Wednesday.   Dr McCrindle also wants Tyson on a heart medication called aldactazide, a diuretic frequently used in patients with congestive heart failure.  This medication will help Tyson flush out some fluids in his body, and especially help the pneumonia (or whatever it is) clear up.  It basically prevents Tyson from going into heart failure before he can get his echo done on Wednesday.

Other than that, Tyson had a really good day!  His mood is much improved from yesterday.  His INR level was back down to 2.0 this morning so we are slowly getting him back on his coumadin.  He is still receiving his ventolin and pulmicort masks every 4 hours during the day and as needed at night.  The IV meds continue to help him recover as well as the oral antibiotics.  The aldactazide will help him pee some fluid out.

Brian picked the kids up from school today and brought them to visit their brother (and sister Addisyn.)  Tyson was allowed out of his room while his siblings visited over dinner.  We congregated in the lounge room on the pediatric wing and it was nice for him to get out of the room, even though "technically" he should still be in isolation because of his pneumonia.  The nurse let him out because she so nicely gave us her opinion that she doesn't think he's contagious because she thinks it's heart failure anyway.  (Nice of her to say so, seeing as she is not trained in cardiology :)  I have my serious doubts      that it's heart failure, but we will find out more next week.

So Tyson was off of O2 for much of today.  From about 11am till 5pm.  He did the same thing yesterday.  As the day progressed he de-satted more and needed to go back on.  Well he can't leave the hospital if he still depends on the oxygen to keep his sats up!  He is only on half a litre of O2, just enough to help a pinch.  Considering when we got here on Monday, he was on the full 4 litres, half a litre is not too shabby.  Brian is there now as I went home with the other kids, and he says Tyson is off O2 again for now.  He still have the nasal prongs in just in case he needs some help overnight.  He does tend to de-sat when he is in a very deep sleep.





I got a phone call on my cell from Stephanie, the cardiac nurse who sees Tyson in cardiology clinic each time we go to Sick Kids.  She was just checking in to see how Tyson was holding up, how the family is holding up, and to give us the heads up about Dr McCrindle's advice to be on the medication for his heart.  It is wonderful that Dr Murphy was able to consult with the cardiac team at Sick Kids and that they now are building a relationship.  It gives us great hope that not every single time Tyson gets sick he will need to be in Sick Kids.  The more our local hospital gets to know Tyson, the more they can help him, and others like him.