HOME!

Tyson finally made it home last night! His discharge took a lot longer than usual and we didn't find out until 1:30pm that they were letting him go home. So by the time Brian came to get us, we had to fight with traffic on the way home, and we didn't get home until 6pm. We came home to no hydro because a transport truck had hit a hydro pole at the intersection right by our house. But that's ok, because a night at home without hydro is still a night at home :) We have a generator so we were able to run some lights and a few necessities. Braden picked up some pizza for dinner, and Merrick & Tiana stopped by too, so we had a nice dinner with almost everyone. 

Tyson had a wonderful sleep in his own bed last night and will be resting for today and tomorrow for sure. His oxygen levels are fine when he's resting, but if he stands up and walks around, they dip lower.  This is to be expected while he's still recovering. He doesn't ever come home from the hospital at 100% health, it always takes a bit of time for him to fully recover. His antibiotics will continue to bust up the pneumonia and he's definitely coughing a lot less today so that's good. 

Thank you, once again, for all your prayers for health and healing for our son. We give praise to God for restoring Tyson's health and bringing him back home to us again. Many thanks to SickKids, the best pediatric hospital in the world. And to the multiple teams of doctors and nurses for running all the necessary tests and scans and nurturing his path back to healing and strength. 

This year has certainly been a journey for Tyson, and a reminder for us, to believe in God’s healing hand and to surrender to His perfect timing and purpose. 

Slowly But Surely

Overnight Tyson was on 0.5 litre of oxygen for most of the night with good sats.  After breakfast they weaned him completely off and he's been on room air since 10:30am and holding his oxygen sats very well at 84-85. They also removed his oxygen/heart monitor and are now just "spot checking" him every 2 hours.  He has been doing great! Sitting at 85 most times that they check.  Tonight he will have the monitor put back on so that they can watch him more closely. We are very optimistic about having a good night.  Your prayers are so needed at this time, that he continues to head in the right direction so that we can go home soon! 

We're Still Here, But...

Tyson had a great sleep and woke up without oxygen this morning. He did well overnight so they turned it off at 4am. He was 83-84 when I woke up at 7, with no oxygen! But unfortunately it didn't last too long because he kept dipping into the 70s so he was on and off oxygen all morning, and has now been on it for most of the day. He's not super thrilled about O2 being back on again. But that's the ups and downs of hospital life.

His frustration didn't last too long though, because we were told that the Leafs were coming by his room this afternoon. He would have missed this if he went home today!

On the left behind Tyson is Jake McCabe (Tyson had to move over because McCabe is shorter than him.) On the right is Brandon Carlo. We weren't really sure who the guy in the back was, lol. They weren't allowed to come into our room because Tyson is "contagious," but they stood in the doorway and chatted with Ty for a few minutes. They also gave him a bag of autographed items. It sure made his day!

Cardiology update: The echo Tyson had done yesterday is unchanged from his last one, so that is good news! That means there's nothing happening within the heart that would lead us to believe that his lower oxygen is from declining heart function. 

Lungs update: He had another chest x-ray today because the team feels he should be progressing quicker than he has. X-ray shows worse pneumonia than what they saw on Sunday, so they've opted to change the antibiotic to something stronger that also covers a broader range. There is also a pocket of fluid in his left lung that wasn't there on Sunday, so if he doesn't show improvement from the antibiotic change within 24-48 hours, they will do an ultrasound on that. 

The nurse he has today is fabulous. His name is Cameron and every time he comes in, they chat up a storm about hockey, basketball, or the Xbox games Tyson is playing. There aren't too many male nurses that work here (mind you, there are more now than 17 years ago) but I feel like Tyson connects really well with them. So if you're reading this, and you're a male, and you're thinking of becoming a nurse, DO IT! The Tysons of the world need you!  

Home is not on the horizon yet, because Tyson has been on oxygen more often than not today. He has to wean off oxygen during the day and stay off all night while keeping his sats above 80 overnight, and then we will go home. Right now, that doesn't seem likely but that doesn't mean we can't all pray for a miracle, right? 

Not Going Home Yet

Unfortunately we are not going home today. Ty had a really good evening last night with sats at 89-90 without oxygen. He was so happy and had a good time playing Xbox with his friends online. 

He slept well from 12am-4:30am until the nurse came in for vitals. Then he couldn't get back to sleep because he was 81-82 so he was too scared to go back to sleep. The doctors want him above 80 when sleeping and above 85 when awake. Ty knows that his sats drop when he's sleeping, and he really didn't want to have the oxygen put back on, so he just didn't sleep. Then suddenly he started desatting to 78-79 for several minutes, then he'd go back to low 80s, then back down to high 70s. This went on for a while between 5:30-6:15am. He tried changing positions, coughing, deep breaths, etc. but nothing worked so at 6:20 the nurse put him back on oxygen. He was weaned off oxygen to room air again by 8am, but shortly afterwards he was back to mid 70s. So now he's back on oxygen again.  

The doctor has ordered an echo to see if it's heart related. The echo is happening right now as we speak. I imagine we won't hear results until tomorrow. 

The nasal swab taken in emerg on Sunday came back positive for RSV. RSV can be challenging for healthy people to overcome, let alone someone with an underlying heart condition. The doctors said it's not uncommon for people with RSV to feel better one day and then go downhill the next day. We also can't forget that Ty's not just a cardiac kid, but he also really only has one good lung. He has stenosis in his left pulmonary artery (and veins) and the blood flow distribution between the right and left side is 88% to 12%.  So that's a huge disadvantage. And the pneumonia always seems to be in the left lung. 

Tyson is pretty discouraged about being back on oxygen and being here longer, as expected. Hospital life seems to always be one step forward, two steps back. Prayers for patience, for both of us, are always appreciated. 

Here we go again...admission #3 for 2025

Tyson has been admitted to SickKids for a couple of days. He's been struggling with energy and feeling crummy the last two weeks, he's been coughing and his sats were hovering around 80. We were worried maybe he has pneumonia again, so we decided to take him in. We bypassed our local hospital and drove straight to SickKids because we knew they'd likely transfer him to SickKids anyway and that is always such a long process.

We have absolutely no regrets coming straight here. The emerg was fully packed but Tyson was triaged straight into a room immediately. It probably helped that he had our oxygen monitor clipped to his finger so the triage nurse saw his low sats when we came in. She called a nurse who put us in a room where Tyson was put on 6 liters of oxygen, given an IV, and had blood work done within 5 minutes of arriving to the ER. We saw both a doctor and a respiratory therapist within 15 minutes. They did a chest X ray, ecg, bloodwork, nasal swab, and called the cardiology team for consult. 

The cardiology fellow said it doesn't look like pneumonia compared to his last xrays from his pneumonia in January, but the ER dr said it is pneumonia, so he was started on IV antibiotics. We made it into a room on 7C around 8pm, less than 6 hours from arrival. We are happy to have saved ourselves some time so Ty could get settled in for the night much sooner. By the time we got to 7C he was already weaned down to 1 liter of oxygen.  He slept fairly well and was weaned completely off by about 1am, with a 0.5 liter of support between 4-5am when he was in a deep sleep, but he is off oxygen again this morning. We will see how that holds! The doctors on rounds this morning said they'd like to see him off oxygen overnight before sending him home. So we appreciate prayers that his oxygen level improves so that he can go home tomorrow. 

People are asking how Tyson is feeling being back here again. He was actually more upset yesterday morning when I told him we had no choice but to bring him in. He actually took the news of being admitted very well, and since he always responds so well to the oxygen support he is very at peace knowing he's in the best place possible. He has been praying for God's peace a lot these days. 

BUT NOW we have the question of WHY, after doing so well for almost ten years between 2015-2025, why has he had three hospital admissions this year? I can tell you that over the last ten years, he has definitely been WAY sicker than this before and we've been able to keep him home because his oxygen levels didn't get beyond our comfort level. This time he didn't even have a fever, he was still eating and drinking well, he was coughing a little but not as bad as some of the colds he's had in the past! It was really his lack of energy and low oxygen that brought us in. We have a ton of amazing tools and resources to use at home when he gets sick, but the one thing we do not have is oxygen. So if he's consistently dipping below 80 even at rest, his body is just working too hard and it's unfair for him to be at home. Even though being in the hospital isn't fun either, at least his body gets a break. 

This pic was taken yesterday in the ER, just before we were taken up to 7C. You can see how the oxygen helps his colour and he's obviously in a pretty good mood.  He's been praying for peace and that he can trust God's plan for his future.

I just spoke with the cardiology fellow on call and she agrees that we need to get to the bottom of why this is happening. She has two theories. Either his teenage growth spurt is making it so that his lungs aren't able to oxygenate his whole body anymore. Or the recent worsening in the scoliosis of his spine (also caused by teenage growth spurt) is squishing his already compressed left pulmonary artery even more, hindering his left lung from oxygenating as well.   This morning he had a panel of scoliosis x-rays and he will also be seen by the respirology team here before we go home to see if there are further tests that can be run once he's better. He had a pulmonary function test done in October and the results of that are definitely worse than his last one. 

It's not realistic that we will find answers to all our questions before he's discharged from this hospital admission, but the cardiology fellow assured me that they are all asking the same questions and they'll be digging into things to find answers. It may mean they have to move up his heart cath date, which is currently scheduled for July. This heart cath (aka cardiac catherization - like an angiogram) was supposed to be a 'routine' cath that they'd do before he leaves SickKids and moves on to Toronto General. But it sounds like he could use a little tweak somewhere to help his lungs out. I can't imagine him being admitted for every virus that comes his way over the next few months. 

This picture was taken this afternoon as we were waiting for his scoliosis xrays. You can see he's off oxygen but his oxygen level is barely holding on. Hopefully he can stay off oxygen today so we can go home tomorrow. Please pray with us for this!