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

This blog is about our nine 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!

Tues. March 15, 2011 - Tyson is in Cardiac Critical Care Unit

Tuesday, 4:00 pm
On Monday afternoon, Tyson was life-flighted to Sick Kids' Cardiac Critical Care Unit in a helicopter. After several weeks of fighting a bad cough, his body finally decided he could no longer fight the illness on his own, but needed some medical intervention.
Although Tyson had been examined several times in the past few weeks at various follow-up appts his lungs at those times still sounded clear. But since his appt with the pediatrician last week, his cough got worse and he became very irritable and tired. He spiked a fever on Thursday and Friday, accompanied by a very red ear, so we thought he was just fighting an ear infection. Saturday he seemed to perk up a bit, and even went for a walk down the driveway with me, and then he enjoyed a ride in the sled as I took a walk down the road. He appeared to really enjoy the fresh air again, and at that time seemed to be getting better.

Then Sunday he had very little energy and sat on our lap most of the day, and was extremely irritable. Brian and I debated all day....take him in or wait it out? Sunday overnight was the deciding factor for us: he was very restless all night, and breathing rapidly. So on Monday morning I packed my overnight bag and called our family doctor to ask if he could call the ER in advance to let them know Tyson would be coming in.

When we arrived at Headwaters, Tyson was satting in the low 60s. Good ol' Dr. Murphy was there making his morning rounds...and he must have had to cancel all his appointments for that day because he spent his entire day attending to Tyson and another child there at the time. Immediately blood work was ordered, a sats probe was wrapped around his finger, and chest x-rays were ordered. The x-ray revealed a small spot on Tyson's right lung, presumably pneumonia. An IV line was immediately placed in his hand and antibiotics were started. During his stay at Headwaters, Tyson needed 10 litres of O2 to maintain sats in the low 70s! (His normal right now is low 80s room air - no O2.) It took a while to get the ok from Sick Kids, because they didn't know if there would be a bed available for him. It is RSV and pneumonia season so all the beds on the cardiac ward are full.

After several hours at Headwaters, we finally got the ok from Sick Kids that there would be somewhere for him to be admitted, but we had to register him through the ER because they weren't sure exactly which ward they would admit him in yet. They decided to life-flight us there because he was too unstable to go by land, since his dependence on the O2 was very great and he was still working very hard to breathe. I am SO glad we took him in BEFORE he needed to be intubated (on a breathing machine - ventilator.) Again we see how things can change so quickly for a guy like Tyson.
During the helicopter ride, my eyes were glued to the outside world. I managed to take a few pictures with my phone but am unsure how to get them on to the blog right now. The trip to Sick Kids is slightly more scenic than what we see in morning rush-hour traffic :) And Tyson looked snug-as-a-bug wrapped up in blankets, strapped to the stretcher....sporting a huge head-set over his ears. Once we took off, the slight turbulence in the 'copter was enough to put him to sleep so he was able to rest peacefully the entire ride (which was a mere 16 minutes!) The driver recommended we not go as high as they normally do - 500 ft above ground (or was it metres?) instead of 1000 feet above ground. The higher altitude would make it harder for Tyson to breathe.

Once we got to Sick Kids, there was a team of 7 medical professionals waiting for Tyson's arrival. I must say, it feels so good to have Tyson in very capable hands. His brief stay at Headwaters went very well, and they all did a fabulous job. But I am always on edge, not knowing if the nurses there truly understand the complexity of Tyson's heart, and I can't help but remember the last time he spent an entire day working so hard to breathe that he suffered a lung collapse. We are constantly being reminded how fragile Tyson is, and how his life can change in an instant. There is just something about being at Sick Kids that puts my mind at ease. When in ER, the staff had already pulled up his file; they knew his diagnosis, his entire history, when his last surgery was, what his last echo looked like, etc. Once Tyson was stable and had been examined for the umpteenth time that day, they sent the cardiology team down to ER to do an echo and have a good look at his heart. It appears that the heart function is good, and there is no fluid building around the heart; but his heart is slightly larger than in his last echo from Feb 23. As you know, they are keeping a very close eye on the left pulmonary artery and pulm veins, but that didn't appear to be what brought Tyson to the hospital this time. However, they haven't ruled it out of the picture yet.

So Tyson was admitted to the Cardiac Critical Care Unit; the same unit on the 2nd floor where he spent much of his time as an infant after open-heart surgeries, or fighting off pneumonia. I have to say, I never thought we'd ever have to see this floor again. It brings back painful memories of his very first surgery, and when he was first diagnosed. After the Fontan in December, he only spent 24 hours in CCCU and as we left, I bade this floor a relieved "good riddance." I can't believe we're back here again. I can't believe Tyson just barely squeaked by without needing to be intubated. Having said that, he is not out of the woods yet. Things could go either way for him. Last night they took him off CPAP (which as you know is the step in-between an O2 mask and intubation.) They had him on 15 litres of O2 through an O2 mask and Tyson was doing quite well throughout the night. However, this morning they decided he needed another break and some extra support, so he is back on CPAP. He will remain in CCCU until he gains enough strength to be weaned off CPAP and back onto just O2. Once he is stable on O2, he can go up to the 4th floor.

It is so interesting to see the difference in him at this age as opposed to when he was a baby. When he was 6 months old, he hated things on his face and tried so hard to pull them off. Yesterday, when they took the CPAP mask off his face for a minute to give him a drink, he actually grabbed the CPAP mask out of the nurse's hand and pushed it back onto his nose. He knows that his body feels better on CPAP. Once he was put on CPAP yesterday, his body seemed to relax and he settled quite nicely. It is amazing how he is learning what is good for his own body, even at only 2 years old. When we ask him if he feels ok, he nods his head and says "uh-HUH." :) Love that kid!
Tyson's INR level has been completely out of whack the past few days, most likely because he's not eating well. It is supposed to be between 2.0 and 3.0. At Headwaters on Monday morning, it was 4.0 so we withheld his evening dose. This morning his level was 7.3. So the coumadin is on hold for a few days until he gains his appetite back again. The higher the INR level, the "thinner" his blood is, which can be dangerous because he will bleed/bruise too easily.
Tuesday, 7:00pm
Tyson was given some extra fluids through his IV line because he is starting to get dehydrated. He is receiving a good amount of fluids but he hasn't eaten anything in two days so they want to make sure he stays hydrated.
He also came off CPAP for a short while this afternoon so that they could insert an Ng tube. (Don't get me started on why they decided he needed a feeding tube. I am still advocating to get that dumb thing out. It will be out by morning or I will put up a fuss....) Anyway, his sats remained stable during the Ng insertion, with just some O2 on blow-by (they literally blow the O2 towards his nose.) The respiratory therapist figured that when they gave him the bolus of saline through his IV line, the increase in fluids may have hydrated him enough to give him enough energy to breathe better on his own.
I don't want to speak to soon but....he's been off CPAP ever since about 4:00pm. He has the O2 prongs in his nose which he is tolerating just fine.
Overall his mood is typical for what you'd expect out of a two year old. He makes his contentment or discontent well known to everyone. It's great that he can talk, so I feel better about leaving him at nights. Brian and I are having to pay for a hotel at this time, since there is no room on 4D for us to stay, and we won't get into Ronald McDonald House immediately. We are trying to get a hold of Tyson's Social Worker so she can get us a discounted rate, but until then we pay full-price, less a measly $10 hospital discount. It is nice to sleep on a nice soft bed, but it comes at a cost. Plus the cost of having to leave the hospital and be in a totally different building than my sick boy :(
Tyson had a pretty good day. Let's hope he keeps up his sats and keeps the CPAP far away. The sooner he remains stable on O2, the sooner he can move up to 4D. Which puts us closer to being home :)
Please keep Tyson in your prayers, that his healing process is speedy and he can return to the energetic guy we know and love.


Jay and Mel said...

Ooo boy what a roller coaster! Poor guy. It is so good that he is getting the help that he needs though...YAY Sick Kids!! :) What a comfor to know he is in good hands...and in Good Hands! Would love to come visit you, seesta, but I am fighting a cold right now so I had better stay away. Know that we are remembering you all in our thoughts and prayers however...and please let us know if there is anything we can do to help. LOVE YOU!!!

"You will keep in perfect peace those whose minds are steadfast, because they trust in you."

Aunt Rita said...

Thanks so very much for the update. You put our minds at ease for a while. Hope you sleep good, and are refreshed to be with Tyson again in the morning. Our prayers are with you...May this "journey" be short and that you can be home again soon.*hug*

Anonymous said...

Thanks for the update! Keeping you guys in our prayers.
(I'll make replacement plans for you for thursday)

Sara said...

We prayed for you tonight after dinner. Glad we didn't burden you with staying this weekend and were able to make other arrangements. Do appreciate the offer. Hope you are home soon!!

Anonymous said...

Thanks for the update....did you want us to contact mom and dad Kott.?
You know were to find us if you need anything! Hang in there.
Take care, Jones and Leo

Anonymous said...

Hi Brian and Mel
Sucks for your March break hey? Spending it at Sick Kids, hope your other kids are having a good week at least :) Praying for a quick recovery so you can come home soon!
Love Rob and Anne

Anonymous said...

What a fighter he is! Keep up the good work Tyson!
Hope your stay is brief and that you are home again soon.
Lots of love, prayers and kisses to Mr T from Uncle DD and Aunt Lea!

Heather said...

Hi Mel and Brian,

Wow what an overwhelming turn of events!!! So glad that Tyson is in Sick Kids now and has been doing good, all things considering!! I hope you had a good rest at the hotel and I can only imagine how it would be for you not being able to be in the same building as Ty :( I pray God will give Tyson the strength and healing he needs to get back up on his feet again, that God will give you and Brian the patience, faith and comfort you two need in all of this and also praying for the work of the doctors and nurses in Sick Kids. Take care and God bless!

Amy Morton said...

Hi Mel,

So sorry to hear that you are back at HSC. I tried to call you late last week but there was no answer and I didn't leave a message - just wanted to touch base and see how things were going. Certainly had been hoping for a time of health and stability for Tyson. I'm sure that this has been a discouragement to you to have to face CCU again. We will be praying that Tyson improves quickly and that you can be home again soon.

Take Care,