TYSON MATTHEW KOTTELENBERG


"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our eight year old son Tyson. Tyson was born with serious complex congenital heart defects, (Hypoplastic Right Ventricle, Tricuspid Atresia, Coarctation of Aorta, Transposed Great Arteries, with VSD and ASD.)
In short, the right side of his heart is completely under-developed (he has half a heart,) his main arteries are mixed up, and his aorta is narrow. He has undergone 3 open-heart surgeries and 5 heart cath procedures to try to 'repair' his heart. Sadly, Tyson has also been diagnosed with pulmonary vein stenosis, a fatal disease in the veins of his left lung. Typically, having the 3 palliative surgeries buys children with single ventricle hearts many years before eventually needing a transplant. But because of the narrow pulmonary veins, this increase in pressure is causing his blood to shunt the opposite way across his Fontan fenestration and surgeons are not able to close the fenestration. As a result, he remains on coumadin and is heading down the transplant road faster than we'd originally anticipated. He's still doing AMAZINGLY well all things considered. We entrust our dear son into the hands of God, knowing that in all things God works for the good of those who love Him!

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.










One Step Forward, Two Steps Back...

Tyson had a good night last night and managed to get some sleep considering he's in a hospital.  Brian spent the night with him so I could sleep at home with Addisyn and Kenya.  Being Tyson's Mom takes a good night's sleep on a *good* day,  let alone a grumpy day in the hospital, so I need all the sleep I can get right now.

When I got there this morning, Brian said that he was doing so well that they removed his oxygen at about 7:30am, keeping sats stable at 88-90!  He was very chipper all morning and being goofy, playing with the bed making it go up and down, watching a lot of tv, and being a very loving character.  Convinced that the extra oxygen overnight as well as the IV antibiotics were really helping and making him healthy very quickly,  I was very hopeful that home was on the horizon already.

Since then however, things have gotten worse and not better.  I noticed some fluid retention in his hands and under his eyes, his belly was very hard and distended, and his mood ever since he woke up from an afternoon nap was absolutely horrible.  His sats also were slowly dropping back into the low 80s.  I mentioned it to his nurse several times, who showed no real concern.  (I eventually told her he needed to be put back on oxygen...there's no need for him to struggle like that when the O2 is readily available.)  Finally when his mood did not improve and I realized he hadn't peed all day, I began to get *really*concerned.  I asked them to weigh Tyson.  When he got on the scale my mouth dropped and I asked for a different weigh scale because the result was 16.8 kg!  Tyson is only 15 kg on a good day!  What does all this mean?  He is retaining fluids and needs to be put on Lasix.  I insisted that Dr Murphy come to re-assess him but was told several times that he would be back in the morning.  Once I added up how much fluid he actually drank today (over 800 mls plus) in addition to the 50ml per hour of saline they push through his IV line, I was very concerned that his body was retaining too much fluid.  At Sick Kids, when he is struggling with pneumonia, they have him on IV Lasix to help his body flush out the fluids.  So I kept insisting that Dr Murphy be notified of his input and output numbers, and that he has gained almost 2 kgs, and that he be made aware of my concerns.  At this point, I was almost ready to pick him up and drive him to Sick Kids myself!  I felt like I had to advocate for my son more than I've ever had to in my entire life.  Oh they must hate me there now, but I don't care.  I have to do what I have to do.  The nurse did end up calling Dr Murphy after I cried to her about my instincts that he needs Lasix to help him drain this extra fluid.  Dr Murphy ordered a chest x-ray and once the results were in, he made his way back to the hospital to re-assess Tyson (being a heart kid you have to be SO careful that the build-up of fluid isn't a result of heart failure as opposed to a lung issue.)  The x-ray showed that the build-up in his lungs is slightly worse than yesterday but is still in the lung area..indicating infection...but no fluid around the heart.) We had a very long chat about what I think should be done and why he was hesitant about it and such, and after some more blood work (second time today, poor screaming fellow!) Dr Murphy did order IV Lasix.

He is now peeing like a mad-man!  And my Mom is the one who will be up at night taking him pee every time ;)  She is staying with him overnight so that we can sleep at home :)

I am hoping that he has a good night with my Mom.  When we left he was having a wonderful temper tantrum but I'm certain my Mom can handle it :)   Please keep those prayers going up!

*****OK so I think I should just add that I am not trying to bad mouth Headwaters Hospital.  Most of the staff have been very pleasant and very good with Tyson and they do want what's best for Tyson.  I think today we just got stuck with a nurse who was not incredibly bright.  We had to repeat things to her a few times before she actually caught on.  And even then I wonder if she ever did catch on.  I trust Dr Murphy 100% that he knows what he's doing with Tyson :)  *****

Admitted to Headwaters

Tyson has been admitted to Headwaters Hospital, our local hospital in Orangeville.  He's been fighting a bad cough, along with irritability and decreased energy levels, and his O2 sats have been in the 70s the last few nights as he sleeps.  They've been stable at low 80s when active, which is ok but not wonderful.  Usually when the sats drop so much at night, it means his lungs are full of fluid and he's fighting pneumonia.  I took him in to our family doctor today who is always so willing to squeeze him in every time I call.  He was concerned about the lower sats at nights, but also found an ear infection.  He said there's no real way of knowing it's pneumonia unless he has a chest x-ray.  Sometimes an ear infection can aggravate the asthma which could be a reason for low sats.  But he wanted me to call Sick Kids and run all the details past them as well, so that they are aware of his nightly desaturations, accompanied by a cough.  The cardiac nurse who Tyson sees regularly said we had to take him to emerg because the de-sats could also be heart related and there would be no way of knowing unless he had a chest x-ray.  (A chest x-ray would reveal if the fluid was in the lungs, or in the pleural space around the heart and lungs.)
So we brought him in to Headwaters emerg today.  I called my Mom to come give me a hand because now that I also have a nursing baby who tags along it is more difficult to deal with Tyson when he gets in his "moods." And boy am I ever glad she was there! Not to mention the long, boring hours for me....the long hours get to Tyson too and he was pretty irritable by the end of it!  It was nice to have an extra set of hands so we can switch babies around every once in a while :)
The doctor ordered Tyson be put on oxygen immediately and later his chest x-rays revealed lots of yucky fluid (pneumonia) in the lungs.  Dr Murphy, Tyson's pediatrician, was there and he also assessed him for signs of heart failure (heart failure often starts with a wet, juicy cough) and so far we are leaning towards the de-sats being from his pneumonia. Dr Murphy ordered both oral antibiotics and IV antibiotics.  Thankfully, they were able to place the IV and run the labs' bloodwork all in the same poke so Tyson wasn't horribly traumatized.  He is also on oxygen via nasal prongs.  I am amazed at his memory.  It has been 14 months since he's been hospitalized and on O2, and when we asked him if he wanted the O2 via nasal prongs he said, "No! They hurt my nose!"  So he was put on the O2 mask for an hour or so, until he realized that it wasn't like his nebulizer mask at home which comes off once the Ventolin is done.  This mask had to stay on full-time.  Once he understood that with the nasal prongs he could still eat, drink, and talk, he changed his mind and went with the nasal prongs.
He is now on the pediatric floor at Headwaters (with no immediate plans to visit Sick Kids unless the treatment plan doesn't work.)
The advantage to being at Headwaters is that Brian  was able to come to the hospital after work and take a shift with Tyson.  It was a long, tiring day with Tyson and also trying to keep a baby occupied.  Tomorrow I am going to take along a few of her baby things and stay the day with Ty again, while Brian goes to work. 
Hopefully Tyson responds well to the O2 therapy and the antibiotics and that this isn't a long stay.  Please keep Tyson's health in your prayers.  Please also pray for our family as we again juggle things around to make everything work.  With 3 kids in their last week of school and a nursing baby it makes things very interesting! 

CoaguChek

Very very soon we will have the privilege of being able to check Tyson's INR levels from the comfort of our own home!  We are so excited to announce that we will be getting a CoaguChek self-monitoring system, funded completely by Cardiac Kids!  (See their website www.cardiackids.ca.  If you click on "Meet the Cardiac Kids" you will see Tyson's story featured.)

So for those of you who don't know what the CoaguChek system means to us, 

IT MEANS NO MORE BLOOD WORK TO CHECK TYSON'S INR LEVELS! 

This is super exciting to us! Because Tyson is on a blood thinner, he has to have blood work every 2-3 weeks to monitor his INR levels and make sure he is on the right dose of coumadin (warfarin.)  Too little coumadin and he runs the risk of blood clotting around his fenestration in his heart, which could cause a stroke.  Too much coumadin and his blood won't clot quickly enough and he could bleed out...especially concerning if he has a head injury while his INR level is too high.  This could cause bleeding in the brain...)

The CoaguChek system is much like the AccuChek for diabetics, involving a finger prick to check the levels.  It is a rather expensive device, not to mention the cost of the individual test strips, and it is not covered by Tyson's ODSP health plan.  Since coumadin was supposed to be a short-term medication (6-12 months until fenestration closure,) we never really thought about looking into CoaguChek and were just continuing with regular blood work.  But now that we know his fenestration cannot be closed, we've been told that he will be on coumadin for the rest of his life.  Blood work every 2-3 weeks means he needs blood work about 20 times a year  for as many years as he's living.  That's a lot of blood work for a little guy over the years! We're also concerned that the endless pokes will weaken his veins, making it harder and harder for them to access them.   

We asked Tyson's CCAC case manager to look into where we can get a CoaguChek and there is only one certified pharmacist in the area that can sell the device and train us how to use it.  You need a special prescription for it, you also need to be trained on how to use it, and not just any pharmacy can actually purchase the device.   The pharmacist works at Brampton Civic hospital and he is willing to come to our house and give us the special training on how to use it.    

So now we are waiting for Tyson's Thrombosis Dr to get back from holidays so she can prescribe the CoaguChek.  From there, she will fax the prescription to the pharmacy in Brampton, and they will bill Cardiac Kids directly.  We won't even have to see the bill!  The CCAC case manager said she will also ask around to other foundations to see if anyone can help us cover the cost of the test strips too, since they are also pretty expensive.

We are so blessed to not only have a great health care system in Ontario, but we also have access to some wonderful organizations that help us cover the costs of Tyson's medical supplies and equipment!   God is so good to us and indeed He takes care of us!

Monday, June 11, 2012

Tyson saw the respirologist in Brampton today.  This is the same respirologist who works out of Sick Kids, but also has an office in Brampton.  Since our cardiology appointments as Sick Kids can often be very long days, we decided to see Dr. B at his office in Brampton instead of trying to get his ECHO, ECG, cardiologist appt and respirologist appts at Sick Kids all on the same day.  And the drive to Brampton is much nicer than the drive to Sick Kids!

After Ty's last appt with Dr B in March, the plan was the slowly wean him from his nebulizer meds for his asthma.  We were successful at weaning him completely off the ventolin mask and then we slowly began taking him off the pulmicort (the long-term cortico-steroid medication through the nebulizer mask.)  He was done with pulmicort in early May and he was stable until about day 8 or 9 off the medication.  Then he began coughing again, having full-blown asthma attacks again, not sleeping well at nights, and he was pretty much a miserable mess most days.  Then to add to his grouchies, he fell and bonked his nose on the bench at church one Sunday, which caused a terrible nose bleed, leading up to 5 consecutive days of 3am or 5am nosebleeds until his nose finally clotted again.  Being on a blood thinner makes it a little more difficult for things to clot over and heal well.  The early morning nose bleeds were also followed by severe coughing fits (usually because the nosebleeds made him grumpy - which led to crying and coughing - anyone who has seen Tyson when he wakes up knows what we mean.)  So after the nosebleed was finally controlled, we'd also have to give him a ventolin mask to stop his asthma attack.  The entire ordeal would last up to 1 1/2 hours and then of course he was grumpy during the day because he wasn't getting enough sleep.  It was a vicious circle.

Like I said above, he was fine off the pulmicort until day 8 or 9 and then the asthma flared up worse than it has been in a really long time.  This obviously means that for the first week off the meds, the pulmicort was not completely out of his system, and once it was, the asthma attacks started again.  So we put him back on the ventolin and pulmicort, giving ventolin 4 times a day again like we did in the beginning and pulmicort twice a day. 

At his appt today,  I explained to the respirologist what happened when Tyson was weaned off his asthma medication and he agreed that Tyson might as well stay on the pulmicort for longer and we can try to cut back on it again next year at this time.  He was happy with how Tyson sounded today and that is mainly because his asthma is under control again finally.  It's too bad that things took a step backwards when he went off the meds, but we are thankful that Tyson's lungs respond so well to the medication and that we can again be on top of his asthma symptoms.  He also remains on Singulair as well.  Tyson will see Dr. B again in the fall.