Tyson is Home!

I am writing this update from the comfort of our own home.  Tyson had a good night last night. He only desatted under 80 once and it resolved quickly, so he didn't need any O2 overnight 🙌

In the morning the doctor came in and asked Tyson to go for a walk up and down the hall to test his energy and see what his sats did during activity. He desatted to high 70s after the walk, and he was quite tired and breathless, he but the sats did come back up within a few minutes of getting back to bed and after some coughing. The doctor said he likely could cough for a few weeks yet, and said we could go home as long as Tyson rests for a few days and that it's also good to do short walks to keep things moving in the lungs. 

Because of exams this week and then the turn around days, his first day of 2nd semester isn’t until Thursday, so we'll need to follow up with our family doctor this week before he goes to school to make sure he's all the way clear.

He's allowed to do Phys Ed (and I’m assuming that also means basketball) as long as he feels well enough and if he's back to his baseline energy and O2 level. 

He slept all the way home and for most of the afternoon. His sats haven't been stellar since we got home so we are strictly minimizing his activity until he's fully recovered. 

We are always so grateful for the level of care we receive at SickKids. It's such a blessing that we have this world-renown hospital right in our backyard. Everyone we have encountered there has been competent, knowledgeable, and sympathetic towards Tyson in every way. We are thankful for the doctors, nurses, respiratory therapists, and everyone else involved in his care. 

I also wanted to take a moment to say thank you to all of our family, friends, church community, and SickKids family for all the kindness expressed towards us during this hospital stay. Your prayers, texts, visits, gift cards, and meals are so greatly appreciated. It is such a gift to belong to a wonderful community who cares for us in times of need. Many times today I was brought to tears from the overwhelming support we have received this past week and the realization that God has indeed carried us. We truly are blessed. 

Heading in the Right Direction

Tyson had a pretty good day yesterday and overnight. He was weaned down to 1.5 litres of O2 during the daytime, but they don't really make plans to continue weaning overnight because of his history with desatting while he sleeps. This morning the nurse continued to wean and he was down to 0.5 litres by 9am.  Which is AMAZING considering where he was just 48 hours ago!! 

He slept well last night. As a teenager he's never ready for bed before me, but with IV meds coming at 11:15pm, there's no sense trying to sleep before then. So we get all ready and tuck ourselves in by 11pm so that once meds are done we can turn off our devices and get some sleep. Both of us always wake up for the 5:30am meds, but thankfully we have been able to fall back asleep quite easily again. The nurse still comes in to check on him and do charting every hour, but we both sleep through that now. 

As of 11am, he is up and out of bed playing Xbox. It's encouraging to see him out of bed. He still gets easily winded from small things like a trip to the bathroom, but he is making good progress. 

Last night he had a bed bath and got himself all cleaned up.  It's amazing how much better you can feel with a clean head of hair and change of clothes. I also washed his favorite Grinch pants in the sink last night and hung them to dry so they were dry and ready for him again by morning. They are his most comfy pants, and it sure beats hospital attire. 

The doctors just finished their morning rounds with him. The plan for today is to take him OFF the oxygen and see how he maintains his O2 sats. They even mentioned the word 'home.'  Once he can make it through the night without needing oxygen, we get to bust outta here! They're also switching him to oral antibiotics instead of IV because the coughing is slowing down and his lungs sound a lot less junky, so that is one step closer to home. 

I have been asking them to lower their expectations for Tyson to maintain O2 sats of 85% overnight. That is higher than what he sats at home when he's well. I have been advocating for Tyson every morning on rounds that 85 is too much to expect of him, and that when we stay on 4D (cardiac ward) they wanted him to maintain 80 overnight. Today on rounds I said it very bluntly and told the doctor "If you're expecting him to stay above 85 overnight, we might as well pack up and move in here."  She chuckled and agreed and told Tyson, "We really like you, but we don't like you that much!"  That got a good laugh out of Tyson.  

So they are going to consult cardiology to make sure that's ok and then will likely lower the parameters to 80 overnight. (Meaning the alarms won't go off unless he dips below 80 saturations.) 

So yeah, once he can go overnight without oxygen, he can go home! The doctor warned Tyson that it's not uncommon to still require oxygen overnight, and if that happens not to be discouraged, but she said we are likely going home sometime this weekend!  

This picture looks almost the same as the one above, but something is missing.

If you didn't see the difference, he is off his O2! He has been at room air for an hour now and is maintaining sats at 89-90%. Praying he can make it through the night without O2, but if not that's ok too. We know home is on the horizon and we are grateful for that.

Healing is Not Linear

Things are moving in a slow, upward direction.  Yesterday they did a throat swab to test for a mycoplasma bacteria that can cause pneumonia. They're really wanting to identify what is causing this pneumonia, the influenza or a bacteria.  If they can get to the root, they know how to treat. We are still waiting for the results from that.

Brian and Merrick came by for a visit last night and brought Tyson's Xbox One from home.  Merrick played Xbox with Tyson for a while so that Brian and I could get out together.  I needed to get out of the hospital and into the fresh air! We went for a chilly walk, browsed Ikea and Winners, and then went to Chipotle for dinner. We came back to Merrick and Tyson laughing and having a good time together. It was really nice to see Tyson smiling again. 

Last night was an ok night. The good news is, they were able to wean his O2 from 60% to 45% and then this morning the nurse continued to turn the settings down, all the way down to 30%. The respiratory therapist came in and moved him OFF of high flow and on to LOW flow!! This is Tyson's favorite kind of oxygen because it's gentle and the nasal cannulas are the right size for his nose. 

He is doing ok so far when he's resting, but desats quickly with too much activity.  Too much activity at this time means standing up and walking to the bathroom 10 feet away. This morning was his first walk to the bathroom and he desatted to 74. The goals for today are to wean oxygen within reason, repeat the chest xray and bloodwork, and get him up and sitting in a chair and moving around a bit more.  Being on low flow O2 is more conducive to moving around. Hoping it helps him eat more and sleep more restfully too.

Tyson is dealing with some anxiety about his recovery, which is not at all surprising. Last night when we were up for a bit (because the nurse was concerned about his low heart rate, sitting at 40-41 when sleeping - which is actually normal for him as a Fontan and an active growing teenager) I caught him waking up and checking the monitors every couple of minutes. He knows that his O2 requirements are what's keeping him here and I am trying to reassure him that it's not his fault, and there's nothing he can physically do to improve his saturations. This is a lesson for him (and me of course too!) to trust God's timing. This is his first time experiencing the ebbs and flows of recovery, he was too young to remember the last time he was this sick. 

He was very depressed this morning when he woke up. He didn't want to eat, drink, pee, nothing. He is just so tired and is quite discouraged that he's not yet feeling like himself. But once the doctors did their morning rounds and he was able to express some of those concerns to the team, they reassured him that healing is not linear, there are ups and downs and peaks and plateaus.  The important thing is that he is now heading in the right direction. Immediately after rounds, he was able to eat and drink again because it really lifted a load from him. 

He had a really good day. He's doing well on the low flow oxygen. He desats when getting up to go the bathroom but that's to be expected right now. We were hoping he could have a shower today but it's still too much for him so maybe another day. 

My parents came for a visit and Tyson and his Grandpa played NHL '23 on the Xbox. (I tried too, but I'm pretty sure Tyson thought that was a boring game.)

He is maintaining his O2 sats with the low flow so far today, so praise God for that! We continue to pray that Tyson can rely on God as his source of strength, courage, and peace. 

One Step Forward, Two Steps Back

It's been an eventful night and morning. I slept through most of the excitement but I knew it was a rough night because the nurse kept coming in 100 times and I woke up when RT came in at 4am to change Tyson's O2 mask.

Overnight Tyson's oxygen sats kept dropping so they first increased his O2 percentage from 45% to 60% and then all the way up to 65%. Even on 65% he continued to desat to 80-82 so the nurse panicked because 65% is the highest level he can have here on 7C and if he still requires more oxygen, it means he'd have to be moved to ICU. Nurse called the respiratory therapist, and at 4am the RT put him back on the high flow nasal prongs because it gives a higher flow than the face mask, hoping that would improve his sats and prevent a trip to ICU. It definitely helped to have the higher flow, because his sats improved to 85-87 but of course Tyson absolutely hates the high flow nasal prongs so he was not happy when he woke up this morning. He says the air flow is so strong he feels like he's drowning because it blows through his nose right to the back of his throat. It is also thick and heavy and sits on his upper lip, making it difficult to talk, eat, drink, because whenever he moves his mouth the nasal prongs get shoved up his nose and it's getting raw and sore. It is frustrating that Tyson can't eat with the nasal prongs, but of course we don't want a trip to ICU either. The daytime RT came in at breakfast time and put him back on the face mask because he was satting 90-91, he always sats higher when he's awake so the face mask is ok for during the day. 

The doctors just finished their morning rounds and have informed us that because Tyson hasn't clinically improved in 24 hours, he's still not eating and drinking as much as he should, and his oxygen requirements increased overnight, they have no choice but to start the IV antibiotics again for 5-7 days. They have mentioned the word ICU a couple of times and of course we want to avoid that at all costs. The doctor also admitted that the antiviral they have him on for influenza (Tamiflu) doesn't always work but it's the best option they have for viruses right now. (Side note: I always chuckle a little when people say things like "it's just a virus." This is your reminder that viruses can make people very sick, at times even sicker than bacterial infections, especially because there's not always a clear course of action.) I feel like we're playing a little bit of Russian roulette with Tyson right now. Throwing spaghetti at the wall and seeing what sticks. I am all for anything to avoid the ICU, that's not where we want to be right now.  

So now he's on an antiviral and IV antibiotics in the hopes of getting on top of this nasty infection and hopefully there is improvement soon. He's also still receiving IV fluids because his output isn't back to normal yet. So yay, sounds like we're not breaking out of here anytime soon. 

I sent an email off to his cardiac nurse practitioner to ask if his O2 parameters are accurate (here they want him above 85 at all times) but Tyson's cardiologist is out of country right now and his NP won't be in till tomorrow so she can't make a judgment call without assessing him. She says she will pop in to see him when she's in tomorrow. I am learning the disadvantages to being on 7C, the general pediatrics ward, as opposed to 4D, the cardiac ward. They aren't comfortable with his sats being 81-82 overnight because they're not usually treating children with heart issues who typically have lower sats. I don't panic at 81-82 because we've seen that a lot over the years when in the hospital. But I also do understand the seriousness of Tyson's oxygen requirements right now, so I get that they would panic when his sats drop below what they're comfortable with. 

I saw that Tyson's demeanour was off the moment he woke up this morning. He was so not impressed with having the high flow nasal prongs back on his face. He is definitely experiencing what it's like to take 1 step forward, 2 steps back. This always happens with every hospital admission, he was just too young to remember. This is more frustrating for him than me, because you could say I'm "used to it." (Even though it's been several years, it doesn't take long for it to feel like yesterday.) But it's also challenging for me, as his mom, because it's absolutely heart breaking to see him so sad and frustrated. After the team came in to tell him he's going back on IV antibiotics for 5-7 days, he just sat there in his bed, showing no expression at all but his eyes were full of tears and a heavy tear escaped and rolled down his face. I hear ya buddy, I have had my moments this morning too. 

Keep praying y'all! 

SickKids Admission

Tyson has been admitted to SickKids with influenza and pneumonia. He got quite sick over the weekend and Sunday night his oxygen levels tanked. We brought him to our local emerg where they took such good care of him, but unfortunately they weren't comfortable with his oxygen requirements so he was transferred to SickKids. It's been about 13 years since he's been admitted here and 10 years since his last hospital stay at Headwaters. 
We got settled into a room on 7C at about 6:30pm Monday night.  Ty's first night went ok. His brothers were able to pop in for a visit while he was still in emerg because they were in the area for the Leafs' game. It brought back a lot of memories for them to be back at this hospital again too.  

It took a bit to get settled in for the night because a lot of different medical people come in and out during the first few hours of a hospital admission. Once settled, Tyson slept fairly well from 12 am to 8am. The nurse came in every hour to check his IV site and do her charting, which she types up on a computer in our room. I heard her come in every hour except the 6am one so that was fun ;) Thankfully Ty seemed to sleep through most of the interruptions, with the exception of both of us being awake for a while between 4 and 5 after they did his vitals.

He is currently on heated high flow oxygen, which is heated and humidified so his nose doesn't dry out. I don't know how many liters or what percent he was on when we arrived yesterday, but by last night he was at 65% on 35 litres and this evening he's at 45% on 35 litres.  They're trying to wean him off the high flow mask and switch to low flow nasal prongs. That'll be much nicer for him to be able to talk, eat and drink, and sleep much more comfortably.

He was on IV antibiotics yesterday to treat the pneumonia but SickKids is fairly confident it's a viral pneumonia from the influenza virus so they took him off both of those and continue with the antiviral medication, which is an oral pill twice a day. He's also on IV fluids to rehydrate because his output isn't great yet, due to not eating or drinking as much as normal. This is coming though, he is drinking well again and he ate a full dinner tonight so they're hoping to take the IV out tomorrow provided nothing unforeseen happens. 

Since he's not able to leave the room, Child Life brought him an Xbox so he's able to do something other than watch tv. It's not Xbox live so he can't play with his friends, but it still put a smile on his face. 

The one tiny glimmer of positivity that comes from this hospital stay is that he is exempt from writing his final exams. Today was supposed to be a study day, with an exam Wednesday, Thursday, Friday, and Monday. But given the fact that we don't know when we will come home, and he's way too sick right now to even think, the doctor wrote an exemption for all of them. Even if we were to make it home in a couple of days, he is not in a good mental state to study for exams. It was a good time for him to be exempt because he has 4 tough courses this semester.  If you ask him though, he says he would WAY rather be home and healthy and studying for exams than be laying in bed sick for days. He is unable to change positions because his face is attached to tubes attached to machines, and removing the mask for even a couple of minutes to eat overexerts him and leaves him breathless, fighting to regain his breath. It's been a long time since something so simple like eating could overexert him. At this point it feels like home is still so far away because of his oxygen requirements. But I also know that a lot can change in 24 hours. We are praying he can wean off oxygen soon so he can make it home for the weekend. (It's also Addisyn's birthday on Saturday so it would be nice to be home to celebrate with her!) 

And me, I have discovered that the couch bed is harder on my 46 year old body than it was in my early 30s  But other than a stiff neck and back, I am actually doing quite well. It was a bit of a shock to hear he was being transferred to SickKids because it's been so long and he's been doing SO good, but I do know that this is what's best for him. It's different this time too because he's older and aware of everything so I have no choice but to be strong for him. He had a tough day yesterday accepting his life as part of God's plan but he seems to be more at peace today. It's also different because I want to respect his privacy and not air things out here that he wouldn't want others to know. So I will ask for your prayers for him, that he continue to be the courageous warrior he's always been, for him to have peace with God's plan for his life, and of course for healing so we can come home soon.