Sunday, July 26, 2015

Jacob's Before-I-Die Message

The other day I was out geocaching with my family and I came across a "Before-I-Die" wall. For anyone not familiar with what it is; it's a chalk wall where anyone can leave a message starting with the phrase "Before I die I want to....". Call it a community bucket-list of hopes and dreams. Here's a picture of my sister and I in front of the wall. 

I have always wanted to make a difference; to leave a lasting mark on the world and be remembered for helping others. I have one life and it would be a waste to only think of myself. In the past few weeks, I've been reminded that no one knows how long we will be here for. My illnesses remind me daily of this fact. One of the lasting impacts I want to make is on behalf of other children who, like me, need to spend a lot of time at the hospital receiving day-long medical treatments. 

Jacob's Healing Rooms is about helping the emotional and psychological sides of illness. We intend to take the current outpatient day treatment rooms and make them true holisitic places of healing. Every patient treatment chair will be equipped with a Wi-Fi enabled tablet to provide access to the internet as well as to act as a source of entertainment. The physical environment will be refreshed with fresh paint and relaxing light covers. Sensory machines (machines that produce lots of bubbles with floating fish and soothing lights), will be placed in each treatment room. I believe that these changes will help to make treatment day a much improved experience for everyone who needs to visit and help to promote healing. 

Here's a quick message from me. Many apologies for the sound and picture quality, it was a busy noon-hour when we filmed this!

Before I Die I want to know that I've made a difference, will you help me?

Saturday, July 11, 2015

Medical Crises and Plans

By all accounts, June has been a very rough month for Jacob. What was supposed to be a fun month of concerts (Ed Sheeran, Fall Out Boy, Train/The Fray/Matt Nathanson, and Imagine Dragons), quickly turned out to be somewhat of a nightmare.

Throughout Jacob's Crohn's journey, he has had bouts of tachycardia (fast heart rate), usually in relation to being on prednisone (steroids). Typically during these bouts, he still has low blood pressure. While at the Train concert, Jacob collapsed in his seat. The on-site EMS staff at the Molson Amphitheatre took amazing care of Jacob, keeping him calm and focused on stuff other than what was going on. When they took his blood pressure, we learned that Jacob was in a hypertensive episode, his blood pressure being 148/90. His heart rate was on average 160 beats a minute. Jacob got to "enjoy" his first ambulance ride as he was rushed, sirens and all, to Sick Kids Hospital. Jacob was assessed and released following an ECG reading.

But that wasn't the end of the story.

Two days later, the telephone rang. A cardiologist had reviewed Jacob's ECG strip and noted that he had prolonged QT waves in his heart. The QT wavelength is measured by the time that passes from the start of a heartbeat to when the heart is ready to fire again. Long QT is considered quite dangerous, it's the most common cause of cardiac arrest in young people. There are also a bunch of medications that are known to create potential issues, a few of which Jacob is on. This news has shaken us, but it's also driven us to make sure we make our mark on the world now and not delay anything as you don't know what tomorrow brings. The Long QT complicates a lot of Jacob's health issues. For example, Jacob's nausea has increased since his last Stelara injection. We cannot change his nausea meds as most of the meds available create Long QT issues, or a potential for them at the very least. It also complicates the plan to treat his Crohn's.

After three years, we finally have a bit of a long-term treatment plan for the Crohn's Disease. Jacob had his assessment yesterday for his GTube, a "permanent" feeding tube implant, and has been cleared as an ideal candidate. There is a wait-list for the procedure of about 3 months. Jacob's not thrilled with the idea, but it will be helpful in the long-run as we will be purchasing a portable feeding pump that he could even wear to school if need be. As with anything, it will be an adjustment.

Before we get the GTube, the team has ordered another gastric emptying test involving eating radioactive eggs and watching them pass through. It will tell the doctors how his stomach and intestines are functioning, and if the stomach emptying is potentially causing the nausea problems.

Before we do the radioactive eggs, they want to do a pelvic/abdominal ultrasound. Jacob has fatty liver deposits and his liver enzymes and inflammation markers have increased even further according to his last bloodwork. There is some consideration as to whether the Stelara is causing this, but Crohn's itself can also caused this. We're really hoping it's not the Stelara, as there truly are no other medications available yet to try. Entyvio is going to be about another year before it can be an option to Canadian children. Fingers crossed we can stay on the Stelara.

Jacob will also need to have a new NG inserted as the current one has been in for a ridiculously long time (May). This is a big deal for Jacob, and normally he has some form of sedation to have it done. But once again, we're back to the problem of the sedation possibly being bad for the Long QT.

SO before we do anything else, they want to have cardiology check Jacob over. They have put in an urgent request, so we should be hearing something very soon. Regardless, it looks like we'll be spending summer #4 (Yes, 4 summers!) in various medical offices. I'm glad that we got the concerts in when we did, at least it somewhat balances out what's to come.

Through all of this, Jacob has been planning out different ideas for fundraising events for Jacob's Healing Rooms so that as soon as he is stable we can get a jump on it. Jacob's setbacks have made him even more focused on doing things to help others and to hopefully inspire others to change their ugly situations into something beautiful.

**I'd like to give a special thanks to the wonderfully helpful staff at the Molson Amphitheatre and LiveNation. In particular, there was a young lady who worked for LiveNation that kept Jacob distracted talking about everything other than what was going on. She all but held Jacob's hand and went way above her job requirements in helping us. I wish that I had taken the names of the various employees present to be able to send a thank you note, but hopefully this message may reach them**