No such thing as too much information

Since Isaiah's Kawasaki disease journey began, there have been many things I have learned. One lesson that has become a reoccurring theme lately is when it comes to your health, or that of a loved one, there is no such thing as having too much information.

Cardiac MRI

Isaiah had a cardiac MRI done in mid March to further investigate his heart function.  Although he has an echocardiogram done every 3 months, it is my understanding that he will require a more complete diagnostic test at least once a year. Last year he had two cardiac catheterizations done, but our cardiologist decided on a cardiac MRI this year, as it would be able to give us an equally good understanding of the status of Isaiah's heart.  I was thrilled by this news, as the MRI is non-invasive, which would mean no incision to worry about and virtually no recovery time, except from the effects of the anesthetic.

The results of the MRI confirmed what the cardiologists had suspected from last year's cardiac cath: 10 to 20 percent of Isaiah's heart has been damaged due to myocardial infarction (lack of blood).  In addition, the MRI revealed that there is low blood flow to other parts of his heart. Our cardiologist explained that a cardiac cath would need to be done to determine if there are any new clots or narrowings since last year and also check on the development of the collateral arteries that were visible in the last angiogram. Apparently, cardiac MRIs are useful for checking heart function and structure, but are not the best choice for viewing narrowing of the arteries. While our cardiologist decided he needed to gather more information, I realized that I needed to do a better job at educating myself about the medical tests (along with their limitations) and procedures that Isaiah was undergoing. 

Chest pains

We were fortunate enough to get an earlier appointment for Isaiah's cardiac cath due to a cancellation.    When Isaiah began to complain of a pain in his chest six days before the cath, we realized how fortunate we really were.  He did not exhibit any other heart-related symptoms and continued to be very active without any shortness of breath or increased pain. We thought the pain could be due to indigestion or a muscle strain, but it was very hard not to focus on the heart given what we know about Isaiah's condition. He continued to mention the chest pain intermittently, but when asked always answered "yes, it's still hurting" and continued to rate it a 5 on a scale of 1 to 10.  We described different types of pain to him in an attempt to get him to identify which type it was, but it is very difficult for a four year old to differentiate between a stabbing pain and a crushing pain.  To quote Isaiah: "it just hurts." At this point the cardiac cath could not come soon enough. We needed to find out what was really going on and if his chest pains were indeed heart-related. 

Unexpected CT scan

We woke Isaiah up at 6am on a Thursday in order to make it down to the hospital for 7am.  He went through the usual prep of being weighed, measured and having his blood pressure and temperature taken. He had settled into his hospital bed with a video game as we waited for the doctors to come talk to us prior to the procedure. He mentioned that his head was hurting him and suddenly started crying. The pain seemed to worsen.  He was inconsolable and was writhing and rubbing his feet together. Isaiah has a high tolerance for pain, which he has demonstrated many times since the start of this journey, so we were quite concerned. We thought it may be a headache due to the lack of sleep and the fasting. Given Isaiah's history of Kawaski disease and his blood thinning regime the doctors did not take this sudden headache lightly. It was possible that it could be due to bleeding in the brain, either from an aneurysm that had developed during his KD episodes, as inflammation can occur in arteries throughout the body, or from a bump on the head which bled due to his many blood thinning medications. The cardiology team did not feel comfortable moving ahead with the cath until the issue of his headache was sorted out. Neurology came to examine him and decided to send him for a CT scan to investigate further -- more information gathering. During this time we were in a holding pattern with regards to his medications and eating and drinking. The doctors could not give orders to start his heparin line (blood thinner) until after the CT scan. If there was in fact bleeding in his brain, giving Isaiah the heparin would be dangerous. The entire time we were worrying that clots could be forming, as Isaiah had not received his usual shot of enoxaparin (blood thinner) that morning. The CT scan did not show any bleeding or abnormalities in his brain. Neurology came to examine him again and confirmed that there were no issues with his brain. Isaiah's heparin line was finally turned on.  This information gathering exercise allowed the doctors to rule out what was not causing Isaiah's sudden headache, but did not give any definite answers as to what was causing it.  I have come to realize that this is a common practice in the medical world and in life.  Sometimes the best and only course of action is to rule out possibilities in order to get closer to finding the true answer.

Finally, the cardiac cath

The doctors decided to keep Isaiah overnight "for observation" and promised to squeeze him into the schedule for his cardiac cath the following day.  Isaiah finally went in for his cardiac cath close to 1 pm on the Friday.  While we hated that he had to go through yet another procedure, we were anxious for the doctors to get a clearer picture of the status of his arteries.  Little did we know what new information would be discovered and where it would lead us.  When Isaiah's cath was completed, one of the cardiologists came to speak to us regarding the results.  He revealed that a portion of Isaiah's left coronary artery (left anterior descending) had become quite blocked due to scarring as the aneurysms healed.  We knew from last year's cardiac cath that the distal portion of his right coronary artery had a blockage due to a clot, but this issue with his left artery was completely new.  The doctor explained to us that the team would need to discuss Isaiah's case further on Monday, but his initial thoughts were that a bypass would need to be done on his left coronary artery in order to get more blood flowing.  Otherwise, Isaiah's heart would essentially be getting blood from one main coronary artery (circumflex) and whatever collateral arteries exist.  This was definitely not the news we were hoping to receive.

Being in the know

Clearly, it is best that doctors have as much physical and measurable information as possible in order to make the best possible decisions about their patients' health.  Only so much can be garnered from anecdotal information, especially when your young patient is still learning to process what they are feeling and also how to communicate those feelings. I would never discount what a child is feeling or saying they feel, or what a parent observes or feels, but results from diagnostic testing is irreplaceable.  I think the challenge for doctors is knowing what are the correct tests that need to be done and what level of testing is appropriate.  We were relieved that the neurologists took Isaiah's headache seriously, given his medical history and ordered the CT scan,  but they were sure to mention that if he were not a KD kid on blood thinners and walked into the ER with the same headache, they would more than likely release him without any testing.  While we felt sorry for Isaiah as he had to undergo yet another test and another round of anesthetic, we were still glad they intentionally "over-reacted," as they put it.  Given Isaiah's complex medical condition, we need every decision made by his doctors be as informed as possible.  Sometimes the value of physical information outweighs temporary discomfort and safety risks (such as radiation exposure), but it is a balance.  Another KD mom I spoke to struggles with the same issue concerning her very active daughter, who is also on multiple blood thinners due to her aneurysms. She has already had to have one CT scan done on her daughter due to a hard fall where she hit her head, but worries about the risk of repeated radiation exposure, should her daughter require more CT scans in the future.  It is a definitely a challenge to figure out if the risk of taking steps to "knowing" are better than just "not knowing."

The responsibility of seeking out information does not fall on the medical professionals alone.  As parents it is our job to arm ourselves with as much information as possible when it comes to our children's health.  It means paying attention to symptoms and documenting them.  It means doing research prior to visits to the doctor.  It means asking questions and then asking more questions.  While I see huge value in online research, I do realize that looking up something on WebMD does not a doctor make.  However, it is important to go to your doctor with valid research and be able to have an intelligent dialogue with them and be able to ask the right questions to get the answers you are looking for.  My husband continually tells me not to be afraid to ask questions and reminds me that while Isaiah's medical team is great, Isaiah is only one of many patients that they see every week.  It is our job to know his medical information inside and out, because the doctors just do not have the time or capacity to do so.

After every visit to the hospital, I realize that there are still many things I need to research and understand better.  Whether it be a diagnostic test, procedure, measurement, medication or medical term.  My hope is that understanding these things will allow me to be a better advocate for my child and also provide me with some peace of mind.  I can't tell you how many times I wished I was able to read an echocardiogram image, just so I would be able to know the results of Isaiah's echos as they happen.  I sometimes wonder if it is too late for me to get trained as an ultrasound technician or go to med school.  My general bio university degree just isn't cutting it anymore.

It is ironic that this far into Isaiah's journey I am doing the same thing that parents of children who are suffering from yet-to-be diagnosed Kawasaki disease are doing: looking for answers.  Some of you reading this right now may have even ended up here because you are trying to figure out if your child has Kawasaki disease.  I have heard too many stories of parents whose children were not diagnosed with Kawasaki disease in time, because doctors repeatedly told them it was "just a virus." My advice to you is: do your research, record the symptoms, voice your opinions to the doctors, ask questions, if you don't get answers, ask more questions, always follow your intuition, remind yourself that you know your child better than anyone and repeat as necessary.  Don't stop until your child has received the care they need.  I know that we will never stop.

A real life hero

Since Isaiah's was first hospitalized in October 2011, I have continually been amazed and grateful for all of the care and support we have received.  This support has come from close family and friends, but also acquaintances and many new "friends" I have made online whose children have also faced the challenges of having Kawasaki disease. Last summer I received an unexpected, but completely touching message from a friend of mine from university.  We had not seen each other in many years and were only in contact via the graces of Facebook, but his message was very heartwarming.

Here is what it said:

Hey Carin! 

I hope you're having a good summer. 

I wanted to run something by you. As you probably know, I recently signed up to do my first full Ironman next year at Lake Placid, NY. A lot of people ask me why I put myself through all the hours of training to complete these races and I often tell them that it's because I can when, for whatever reason, so many can't. I had a marathon coach once tell our group that each race you run should be a celebration of your life and your fitness and to never take that for granted. That message has always stuck with me. I truly feel blessed and extremely fortunate that I'm able to run these races. 

With that in mind, I'd like to do something special for my first Ironman by dedicating it to those who just aren't able to go out and swim, bike or run. I've been reading your blog about Isaiah's journey and have been really inspired by his amazing courage. I know running a 13 hour race is nothing compared to what he's been able to get through, but I would like to do the Ironman for kids like Isaiah who can't, in the hopes that one day they can. So, if it's okay with you, I would like to use my Ironman race as a way to raise awareness about KD and raise some funds for KD research and support. Let me know what you think. 

All best wishes,
Mike

Needless to say, I was extremely touched.  I had not seen or talked to my friend in so many years, but yet he wanted to do something special in Isaiah's honour to raise awareness of Kawasaki disease. How amazing.

Here is my response:

Hi Mike, 

I was so deeply touched by your message that I have to admit I was teary eyed after reading it. I have not seen you in so many years (too many!) and you have never even met Isaiah, but yet you want to dedicate your very first Ironman challenge to him (and kids like him) and help raise awareness and funds for Kawasaki disease research. That amazes me and moves me beyond words. I think I made a joke in a previous FB post that you were my hero, but now you truly are. 

I think that this would be so wonderful, but I do want to clarify that Isaiah, along with many KD survivors, is actually able to run, swim and bike. Coincidentally, those are some of the few sports that he will be able to take part in. His heart itself is still healthy and able to handle physical activity. However, because he is on blood thinners (and will likely be on them for life) he can not play any contact sports in which he may sustain any head or abdominal injuries. That being said, I am not sure if Isaiah's case is true to the meaning of your dedication. However, I am sure there are other more advanced cases in which KD survivors suffer damage to their actual heart muscles and are unable to do any extreme physical activity. I would totally understand if you decided to redirect the focus of your Ironman dedication. I really want you to be true to the message you want to convey and what is in your heart. I am honoured and grateful that you even thought of Isaiah and KD. 

Another coincidence that I thought might be worth mentioning is that Isaiah's cardiologist also did an Ironman a few years ago to raise funds for KD research. It seems to be a good fit, as these kids are facing their own challenges -- their own Ironman if you will, and it is also important for them to get lots of exercise to keep their hearts healthy, as it will play a huge role in their health when they become adults. 

Thanks again for thinking of Isaiah. Regardless of what you decide, I will always remember this touching gesture. We will be rooting for you no matter what. 

BTW, do you mind if I use your message as part of a future blog post? I think it would make an inspiring post. 

I hope you are enjoying the summer and really hope to see you soon. 

Take care,
Carin

 Mike decided that he still wanted to dedicate his race to Isaiah and KD:

That's awesome that Isaiah can swim, bike, and run! I must have misread your blog post. I thought all sports were out for him. Maybe one day he can do a 'kids of steel' race -- Simon Whitfield started out doing these when he was a kid! 

I'm still more than happy to do this race for Isaiah and other kids with KD. I think there are a whole host of messages that I want to convey that mesh quite well with this cause. Beyond doing this race for those who can't, I'm hoping that I can inspire others to get active and celebrate their health. And, if this inspires survivors of KD to get into triathlons who need to stay 'heart healthy', then even better! And, while I would never dare compare a triathlon to fighting a disease, both require a tremendous amount of courage and toughness to get through. Most of all, you need a strong heart - both figuratively and literally - to keep going!

Mike is absolutely right.  All of the KD kids I know and read about are all strong and very brave.

I always say that Isaiah is my hero, but my friend Mike is a very close second.  I am truly touched by his gesture and also by his dedication.  From what I understand, preparing for an Ironman race is a complete lifestyle change.  It requires an insane amount of training and preparation, both physically and mentally. I find this type of dedication very inspiring.  I am sure that when Isaiah is older he will be inspired too and hopefully be motivated to stay active and maybe take on a similar challenge.

Thank you, Mike. You a true inspiration, both as an athlete and a human being.  I will be forever thankful to you for bringing awareness to Kawasaki disease and dedicating your efforts to my little guy.  Good luck with your training. We will be cheering for you.

Mike in action at the Ironman 70.3 Pocono Mountains race last year.

[Just a note: Looking back at my message to Mike, I realize that I had made an error.  Isaiah does in fact have damage to his heart muscles.  His recent MRI has confirmed what the doctors had assumed based on his cardiac cath last April: approximately 10% to 20% of his heart muscle has been damaged.  I won't get into the details here (that's for another post) but thankfully, his overall heart function is still good so he can still do his running and jumping.  I am not sure if a "kids of steel" race is in his future or even authorized by his cardiology team, but at least he can still catch his friends at tag, shoot a basketball like it's nobody's business and kick my sorry butt at Kinect tennis.]

Gratitude

When I first began writing this post, Isaiah had not been diagnosed with his second case of Kawasaki disease.  However, given what we have gone through yet again, the original sentiments inspiring this post are even stronger.  It had been over six months since I had published anything prior to the post about Isaiah's unexpected second bout of KD.  Many milestones had passed, including Isaiah's first day of kindergarten, fourth birthday and the anniversaries of his KD hospitalization and discovery of his aneurysms.  It would be easy for me look back and reflect on how many of these moments were very bittersweet for me.  I could write about the struggles we have been through this past year and how this unexpected journey has challenged us in ways we never imagined.  However, in keeping with the New Year's tradition of resolutions and starting fresh (even though it is already the end of February), I prefer to focus on my "theme" for the year: gratitude.

Gratitude is good for you

I generally consider myself to be positive person, who is thankful for all the blessings in my life. However, I was especially inspired by an article in Scientific American which highlighted studies indicating that the regular practice of gratitude had positive physical, emotional and social benefits -- even more reason to count our blessings. 

Things I am grateful for...

I have been very fortunate in many aspects of my life, but this list focuses on the things that I am grateful for with regards to Isaiah's journey.  Here are some of the things I am grateful for:

• I am grateful that I live within driving distance of one of the best children's hospitals in the world; where the doctors not only know what Kawasaki disease is, but also know how to treat it and are able to answer questions about it.  I have read too many stories from parents who are so frustrated, because they are not able to get answers from the doctors at the hospital their child is being treated at, due to lack of knowledge and experience. 

• I am grateful that I live in a place where IVIG is readily available and accessible to my son.  I am fortunate that IVIG is one of the treatments that is covered under our government's Ontario Health Care system.  My understanding is that IVIG is very expensive and I can only imagine how difficult it must be for some families, especially in developing countries, to afford to pay for IVIG treatments.  I am saddened to think that there may be children that go untreated for Kawasaki disease, because their family was unable to pay for the IVIG.

• Further to my previous point, I am grateful that my family has health coverage through my husband's employer.  Isaiah currently takes four different prescription medications.  His enoxaparin shots, in particular, are quite costly.  These type of medication costs would be a huge burden on families that do not have any drug coverage.

• I am so fortunate that I currently have the option to be a stay-at-home mom.  Isaiah has monthly blood tests that must be done at the hospital, as well as echocardiograms and cardiology clinic visits every three months.  Add onto that his two hospitalizations, a follow-up visit with rheumatology and clinic visits with thrombosis and you have a whole lot of time spent at the hospital.  Surely, if I had a "regular" job all of this "time off" would have caused problems with my employer and my co-workers. My hat off to all those moms who work outside of the home and are still able to manage the complicated life of a child with health issues.

• I am grateful for the support of wonderful friends and family.  I am constantly mentioning this in my posts, but that is because I can never thank any of my friends and family enough.  Their love and support is what has kept us going for the past year and helped us through the especially hard times when Isaiah has been hospitalized.

• I am grateful that I have access to medical professionals that are leaders in their field and specialize in Kawasaki disease.  I am grateful not only for my access to them, but grateful for the fact that they are all wonderful at what they do, genuinely care about Isaiah and have done everything they can for my little guy.

• I am grateful that Isaiah was diagnosed correctly with Kawasaki disease.  If he had not been diagnosed correctly, we would have no idea that he had developed coronary aneurysms, he would not  be on blood thinning medications and he would be walking around constantly at high risk of experiencing a heart attack.

• I am grateful that Isaiah is here.  I am sorry if this statement seems morbid and decidedly NOT uplifting, in contrast to the main message of my post.  But this is the reality of Isaiah's situation.  If he was not diagnosed or was not receiving the care he is currently receiving, who knows if he would be still be here.  I thank God everyday that he is.  

Being here is something we should all be grateful for.  We should be grateful that we are here and those we care about are here.  Even though Isaiah's life may be perceived as more delicate, because of all that he has been through and as a result more precious, in reality all of our lives are delicate and precious. You never know what tomorrow may bring.  So go be grateful.  Go count your blessings and share them.  Go thank someone for something.  It's good for you.

Quick update: second bout of Kawasaki disease

A new post is long overdue and it saddens me that this post was created in order to share news of Isaiah's second battle with Kawasaki disease.  Coincidentally, I have been working on a post entitled "Gratitude," which is much more uplifting. Despite the recent turn of events I plan on completing that  post, so it will be coming soon.

I will not be going into too much detail right now. I just wanted to post a quick update for those of you who have been concerned about Isaiah this past week.

Symptoms

Isaiah started off with a low grade fever last week, which we assumed was just the beginning of a cold or flu. We kept him home from school, but he seemed to have lots of energy during the day and was acting very much like his normal self. He did complain of a pain in the middle of his neck, which we thought may just be a sore throat.   I took him to his pediatrician on Wednesday, but he did not note any swollen lymph nodes of redness of his throat.  He took a swab for strep throat, but we did not receive the negative results until Monday.

On Thursday Isaiah's fever seemed to intensify.  The thermometer readings were higher and the Tylenol was unsuccessful at bringing his temperature down to an acceptable level. We were administering Tylenol as soon as one dose began to wear off.  On Friday he began to develop a rash, chapped red lips and complained that his legs hurt. This was all too familiar to me.

Could Isaiah really have Kawasaki disease again?!  My understanding was that it was not very common to have it more than once.  Additionally, Isaiah's energy level and appetite were so much better than during his first battle with Kawasaki disease. I was also aware that other viral infections can cause similar symptoms. The other thought that ran through my head was that perhaps this is just the way Isaiah's body will express any serious illnesses from now on.  Perhaps the Kawasaki disease has changed his immune reaction and this is his new normal.  I reached out to a couple other "KD moms" and they responded that their children did show some of the KD symptoms post-KD due to other illnesses. However, none of them had experienced a rash.

Over the weekend Isaiah's rash would disappear and then reappear with different levels of intensity. His body seemed to coping with whatever he had, as he was able to remain fever-free for extended periods without Tylenol.   I thought maybe we were in the clear.  Maybe it was just the flu.  There were several points during the weekend when we considered taking him to the ER to be checked, but did not due to these "glimmers of hope."

On Monday he awoke fever-free and rash-free.  By lunchtime his temperature started to creep up a bit, the rashes began to appear and he was still having problems walking normally. I sent Isaiah's cardiology team a quick email and they called me back to tell me to bring him to the ER to be checked. And thank God they did. I will be forever grateful to our cardiologist and our nurse practioner for making that call.

Diagnosis and treatment

After being examined by the ER doctors, Isaiah was seen by the Rheumatology team, who quickly diagnosed him with Kawasaki disease...again.  By this time, Isaiah's rash had gotten worse and he was showing more typical signs of KD (red eyes, red and swollen hands and feet) and could barely stand due to pain in his feet.  Despite this, he still had energy and seemed to be in good spirits, considering the circumstances. It was very hard for me to believe that he had Kawasaki disease for a second time. However, disbelief was just one of the many other emotions I was feeling at the time.  My "short post" is already much too long, so I will leave it at that,

Last night, Isaiah was treated with IVIG, which was the same treatment administered the last time.  During his first bout, he required two rounds of IVIG and two rounds of pulse steroids. So far, this one round seems to have done the trick.  Based on Isaiah's symptoms and behaviour, it seems that he experienced a "milder version" of KD -- if such a thing exists.

Looking forward

An echo was done on Isaiah today and it does not show signs of any new aneurysms or enlargement of his existing aneurysms. While this is good news, we are not in the clear. Not even close. Aneurysms caused by Kawasaki disease often are not formed until after the symptoms of Kawasaki disease have disappeared. Isaiah's heart will be monitored very closely for the next few weeks.  He already has two echoes scheduled and will likely have more prior to his MRI scheduled in April. In the meantime all we can do is ensure he keeps up with all his medications and hope and pray for a positive outcome.

We will likely be discharged tomorrow, which is wonderful news. Two and a half days at the hospital is more than enough.

A word of thanks

I want to express my heartfelt thanks to all of those that called, texted, messaged and emailed me or simply sent some good vibes our way.  I appreciate all of your thoughts, prayers and offers to help. I am always amazed and overwhelmed by the number of people who care about Isaiah and our family. We are truly blessed.  There are a few friends and family have made these last few days much easier and we are so grateful. We are also thankful to the staff at SickKids for taking care of our little guy and getting him home quickly. Of course, we are eternally grateful to Isaiah's cardiology team for urging us to have Isaiah checked, for answering phone calls and emails swiftly, even after hours, for providing us with complete and honest information and for giving Isaiah the highest level of care possible. 

I will do my best to post updates of any significant developments.

1st Kawasaki Disease Parent Symposium in San Jose, CA

I have been asked to spread the word about a Kawasaki disease symposium that is happening in the Bay area.  It is being organized by the Kawasaki Disease Foundation, a US non-profit organization dedicated to Kawasaki disease issues.  The event will be hosted by KD specialists from Seattle,  WA.  This is a wonderful opportunity to have your questions answered by two of the leading physicians in the field and meet other parents who have been affected by Kawasaki disease.

Following is the basic info:

When: Saturday, August 25, 2012 from 1-4 P.M.

Where: Good Samaritan Hospital Auditorium
2425 Samaritan Drive
San Jose, CA 95124
(408) 559-2011

What: 
Join KD specialist, Sadeep Shrestha: Assistant Professor, Department of Epidemiology, School of Public Health, University of Alabama-Birmingham, Birmingham, AL, who will be talking about the Genetics of Kawasaki Disease.

And Dr Michael Portman: Professor, Attending Cardiologist and Director of Cardiology Research at Seattle Children’s Hospital, who will be speaking about the Paradigms of Kawasaki Disease.

Babysitting will be available.

You can register online at the Kawasaki Disease Foundation website: http://www.kdfoundation.org/index.php/component/chronoforms/?tmpl=component&chronoform=KDSymposiumSanJoseAug2012

You can also get more information on their Facebook event page.

Contact info: 

Vanessa Gutierrez
kawasakidisease2007@yahoo.com

Kate Davila
katedavila@yahoo.com

I am sure it will be a successful event and would love to hear back from any attendees about insights they gained while attending.

No news is good news

It's been quite awhile since my last post.  There seemed to be nothing new to report regarding Isaiah's health, or perhaps I was just avoiding composing a post, as it would force me to think about Isaiah's heart problems.  In between check ups I find myself almost forgetting how serious his medical problems are.  We have fallen into so much of a routine of administering his shots and his oral medications, that they no longer serve as strong reminders of his situation.  However, as the date for his echocardiogram check up came closer and closer, I found myself thinking about Isaiah's aneurysms more and more and my anxiety level steadily increased.  A few days before his echo, I was watching a KD-related video online and ended up in tears.  The little boy in the video had suffered from KD, but despite a large delay in receiving treatment, he was fortunate enough not to end up with any long term effects.  Photos of the boy brought me back to the awful days of Isaiah's hospitalization and a feeling of despair washed over me. Why did Isaiah fall into the small percentage of KD survivors that end up with aneurysms?  It was the first time, in a long time that I cried over Isaiah's condition.

On Wednesday we headed down to SickKids for Isaiah's check-up and clinic visit.  He is so used to going there now that he calls it "my hospital."  He even makes a game of guessing what level we are going to park on.  As always, the time during the echo was full of anxiety.  Mike and I stared at the screen, trying to make sense of the images and measurements without really knowing what any of them meant.  When the sonographer finished her report, we had to wait while she had the cardiologist sign off on it.  She was gone for quite awhile and we worried that there was something wrong.  She eventually returned and told us that we could go to our next appointment. The wait between the echo and our actual clinic visit with Isaiah's nurse practitioner was an excruciatingly painful one.  It is difficult to balance preparing for the worst and hoping for the best.

As it turns out the echo, blood work and ECG were all good.  His heart function is fine and the echo did not indicate any clots or changes in size of any visible aneurysms.  Although we are always hopeful for some improvement in the size (ie. lessening) of Isaiah's aneurysms, at this point we are happy with no change at all. Yay!  Perhaps Isaiah's condition has stabilized for now.  While we continue to hope and pray for improvements in Isaiah's health, we will always be grateful for the wonderful life that he is living now and will use these cherished moments, as a source of strength to overcome any challenges that may lie ahead.

Isaiah doing some post-echo gaming.

The best Mother's Day gift

Isaiah had his one month post angiogram  follow-up echocaridogram this past Friday.  I was more nervous than usual.  In the past, I had arrived at each appointment with an optimistic attitude and unexplained confidence that everything would be fine.  This time the optimism was dulled and the confidence was not so high.  Perhaps the experience of repeatedly receiving bad news was finally taking its toll on my positive disposition.  Or perhaps I was learning to manage my expectations, so as not to be disappointed and to prepare myself for the worst.

Longest 90 minutes ever

As fate would have it, the echo clinic was running a behind that day and Isaiah did not get called until half an hour after his scheduled time.  My nervousness was growing as opposed to subsiding.  Once the technician began doing the echo I watched the screen intensely for any clues as to Isaiah's status.  It was then that I realized that I really should look into how to read an echocardiogram image.  I am sure that somewhere in the internet abyss exists a wonderful tutorial.  Otherwise, I will be enrolling myself into a cardiovascular technology program. The waiting for results is the worst.  The technician is not at liberty to discuss results, so I always try to get a "read" on them, but it never works.  I had emailed Isaiah's cardiologist that morning to let him know that we would be in that day and he told me I should email or call him when the echo was complete.  I emailed him, but did not get a response right away. so I proceeded to take Isaiah down to get his blood tested for his enoxaparin levels.

Good news at last!

I soon received a response from Isaiah's cardiologist.  He mentioned that he and the Head of Cardiology had been looking at the images as the echo was being completed.  Wow.  Talk about getting top-notch care. We are so fortunate to have such a wonderful and caring cardiologist looking out for our little guy.  According to the doctor there were no new issues.  The heart function looked good, there were no new clots that could be seen and the aneurysms had remained unchanged in size.  Finally, some good news!  I was overjoyed and relieved.  It was definitely the best Mother's Day gift I could have received.  Although we are grateful that there were no new issues, it is somewhat sad that news of no change, which equates to no improvement as well, is good news.  We continue to hope for the best and are thankful for each wonderful day spent with Isaiah. I hope that Isaiah inherits my optimism and positive outlook on life -- it will certainly serve him well on the road he must travel.

Do the Happy

I wanted to mention that SickKids is running a great campaign this month inviting everyone to Do the Happy.  "It is fun way to raise funds for research, care and learning, that will give thousands of children a better chance at a healthy and happy life."  Please visit the site to learn more about some great events and deals from many GTA companies supporting the campaign.

Doing the Happy.  Isaiah checks out the icons we purchased to honour our favourite SickKids nurses for  Nursing Week.