TYSON MATTHEW KOTTELENBERG


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

This blog is about our eight 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!

HOME AGAIN!

Praise the LORD, we are HOME!
Tyson's O2 was weaned during the day yesterday, and turned all the way off last night before he went to sleep. He managed to do very well through most of the night, with the exception of about 2 hours when he was in a very deep sleep and the nurse came in to turn it on to 0.5 litres...because he was satting low 70s. It's funny how in the beginning of this flu while Tyson was in Critical Care, we were thrilled with low 70s because that's pretty much as high as they were able to get, even on the hi-flow mask.
This morning when Tyson was awake he was satting high 80s, so the doctors on rounds decided that was good enough to send him home. The charge cardiologist actually asked me, "What do you think, Mom? Are you ok to go home today?" I smiled and said, "Welllllllll.....we really love you guys....but of course we'd love to go home." The nurse came in to take off Tyson's nasal cannulas while I was in the shower. When I got out, I asked him, "Hey Tyson! I can see your face!" And he pointed to his nose and said, "No Oh-two!" As we waited for Brian to come pick us up, Tyson spent the morning in the playroom. Both the nurse practitioner and a cardiologist fellow came in to listen to his lungs again. The NP was entirely impressed with how clear Tyson's lungs sounded! Let's pray they stay that way for the rest of the year! And I am so glad that Tyson could leave the hospital with memories of playing in the toy room, playing hockey in the hallways, hi-fiving and giving "props" to all the nurses; and not being cooped up in his hospital room!
When we headed back to his room for some lunch, his nurse wanted to do one more set of vitals, and hook him up to the sats monitor again, and his oxygen saturations were 89-92! I was shocked by this, as I've always understood he wouldn't sat that high because he had the fenestrated Fontan; I've always thought his sats would stay in the 80s until after the fenestration was closed during his cath in a few months.
Tyson needs to have an INR level done tomorrow to double-check that his warfarin dose is on the right track again. We get this done in Shelburne, so we won't have to make any more trips to Sick Kids, the LORD willing, until May. Tyson will be seen by our family doctor for a follow-up next week.
It's always wonderful to have everyone together at home again. The boys are clearly thrilled to be home, Kenya is very cuddly today, and Tyson was just super-hyper to be home with everyone :) When we got home this afternoon and I went to show Tyson his bedroom, I couldn't help but break down in tears of overwhelming joy. Every time he goes through a critical experience like this, and we are able to take him home in the end, it's like God is giving Tyson back to us again. God has once again spared his life, and we have been granted more time with him again. It just feels so good!
Brian and I would like to thank all the families who've stepped in to help take care of our other kids; Jeff & Hetti, Paul & Kim, Jay & Mel. Thanks also to Mom and Dad Spanninga, and Mom and Dad Kottelenberg; your love and support mean the world to us! And of course to all those who visited, it was great to have some company during the long days. And thanks to those who brought special gifts and toys for Tyson to play with. Most of all, thanks for all your prayers and petitions on Tyson's behalf. We serve an amazing God!
Brian and Mel:)

Wednesday, March 22, 2011



Playing hockey in the halls with Grandpa Spanninga while Grandma Spanninga chases after him with his O2 tank. (Check out his new scrubs from them :)




Tyson doing his "goalie pose"



"For the LORD God is a sun and shield;
the LORD bestows favour and honour;
no good thing does He withhold
from those whose walk ...is blameless.
LORD Almighty,
blessed is the one who trusts in You."
Psalm 84: 11 & 12
I am happy to report that the end is FINALLY in sight! Tyson had a very good night; the nurse didn't need to do any vitals overnight because they're now ordered q12 hours, and Tyson didn't de-sat all night long. So we both slept like rocks...snoring included. (Tyson, not me:D )

When Tyson awoke his sats were in the low 80s!! Yay! So the O2 was turned down to 2.0 litres and then he spent all morning in the playroom. We didn't hook him up to the portable sats monitor during this time (because it's very difficult for me to chase after him with both an O2 tank and the portable monitor.) When we got back to his room after running around for a few hours, we hooked him back up to the sats monitor, and his sats were mid 80s,(!) so we turned his O2 down to 1.5 and he did very well. Then after lunch he was satting 90-92 (which is actually too high for Tyson because of his heart) so I took the liberty to turn it down again to 1.25 as the nurse was busy with other patients. He is now napping (when he sats lower) but he is still in the high 70s, 77-79 :) I assume that when he wakes we can crank it down to 1.0 litres, and maybe leave it there till tomorrow? If all goes well he could very well be off his O2 by tomorrow afternoon?? So I am excited because home is finally in the near future :) *smiles and sighs of relief*

Tyson had a really good day yesterday as far as his fluid intake. His minimum TFI (total fluid intake) is supposed to between 800-900 mls and he drank almost a full litre! He is heading in that direction for today too. When he is up out of bed and burning off energy, he is definitely needing more fluid.

As of tomorrow, Tyson will have been here longer for this Influenza than he was for his Fontan surgery, and he was in CCCU twice as long for the Influenza than for his Fontan. This just shows how a simple bug can completely wipe him out. Can we say "flu shot next year?" :)

Tyson and I both are enjoying another day with company. Brian's parents came down with my Mom and Kenya, and now Mom Spanninga is staying here till this evening when my Dad will be here too.

Thanks for checking in on Tyson! Keep praying as he continues to be weaned off the O2. We would LOVE to be home for the weekend! God is so good!



Trying to find the hockey game...




Wearing his new scrubs from
Grandpa and Grandma









Tuesday, March 22, 2011

PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!
Tyson is allowed out of isolation! You'll never guess where he spent the entire morning!
He still de-satted a fair bit overnight but the doctors are impressed with his recovery and clear chest x-ray so they've taken the isolation sign off the door and he's free to go play with other kids! We have to follow him around with an oxygen tank and sats monitor so it can be a bit tricky...but it's worth the hassle. (I don't know who's more excited, him or me :)
His sats are still inexplicably lower than they should be considering his health...so I'm not sure what the plan is there yet. I know they want him to drink more fluids, which is difficult to do. You can lead a horse to water but you can't make him drink. They would like to see him taking in at least 800 ml of fluids per day but this is difficult when he rarely drinks that much at home.
There was talk on rounds this morning about putting him on IV fluids because he's not drinking enough. One of the problems of having so many different cardiologists working on his case is that information gets confused or misunderstood. Before Ty was admitted he weighed around 13 kilos. He was never weighed on admittance to Headwaters or on admittance to Sick Kids because he was in respiratory distress and his weight was the least of their concerns at the time. Anyway, at one point on 4D, before the IV Lasix was given, Tyson weighed 15.0 kilos because he was retaining an extreme amount of fluids. You should have seen how puffy he was; his face was huge, he was puffy around the eyes, and his arms and wrists were puffing out around the tape he had on to keep the IV in place. This morning his weight was 13.1 kilos. So the one cardiologist on rounds said to the other cardiologist in charge, "I think we need to start him on IV fluids as he is clearly losing a lot of weight. His admitting weight was 15.0 and he's down to 13.1. He's lost almost 2 kilos in one week." Oh, you should have heard me guffaw at her! I was like, "He has NOT lost almost 2 kilos!!! He was 15 kilos last Wednesday because he was retaining a huge amount of fluids!!!! His last echo appointment on February 23 he weighed 12.9 kilos and now he's 13.1!!!" She was like, ".....Oh....." (I can't imagine the things that happen to kids when their parents are not there to advocate on their behalf!)
Anyway, there is no other news except that Tyson and I are both happy to be allowed out of the room, we are working on getting him to drink more, and we still have to wait till his sats improve before we can turn down the O2. (He's been around 70% most of the day.)
All in all, a pretty good day. Add to that some good company, and it was a very good day :)
Mel:)

Monday, March 21, 2011

HAPPY SPRING!

Tyson had an ok night. His sats kept dipping so the nurse was in and out of our room all night. Fortunately, Tyson sleeps through it all, unlike his mother :)
His sats are still not where they should be so the cardiologist ordered another echo and chest x-ray today (without me pushing for it!!) to rule out other issues. I hope to be able to report back on those later tonight. THANKFULLY he did not need sedation for this echo and was able to lay still for almost an hour. I am totally gonna push for his next out-patient echo to be non-sedate! He can do it! And you all know how much he and I both hate the sedation part. It sucks :(

Nothing more to report for now. I will try to get to a computer at about 9pm tonight for another quick update. Praying there was nothing significantly wrong on the echo and CXR.
9:15 pm
The echo came back ok. There are no obstructions in the Glenn shunt and the Fontan connection is good too. So it doesn't look to be a cardiac issue. The chest x-rays came back clear too :) Praise the LORD!
This afternoon, all of a sudden Tyson's sats started to pick up a bit. They sat in the mid-to-high 70s (still on the high flow O2 mask. I even saw an 84 :) Unfortunately we don't get to see those high numbers for too long because they immediately start weaning the O2, which is a good thing though.
So he was weaned off the high flow O2. The lower the percentage of flow, the louder that machine got...I was getting rather annoyed! There was no way I was going to get any sleep with that loud cooshing sound. Well, instead of switching Tyson over to the low-flow O2 mask the nurse decided to give the nasal cannulas a shot again. I don't want to speak too soon but......he's been on 2.5 litres of O2 on the nasal cannulas since 7:00pm...with sats in the mid 70s! YAY! I asked them not to bother trying to wean the 2.5 litres until morning, since Tyson seems to desat while he's asleep.
So it looks like things are FINALLY heading in the right direction. Please keep praying that the sats keep climbing and the amount of O2 required keeps going down. Once Tyson's sats are good on 2.5 litres, they'll wean to 2.0, then 1.75, 1.5, etc etc until he no longer needs it at all - which usually takes a few days at the very least. I think they usually like to see a patient completely off O2 altogether for 24 hours before discharge. So we still have a few days to go but at least we're heading the right way now :)
I saw in Tyson's chart today that for Influenza A they isolate the patient for 7 days. Tomorrow will be day 7 in isolation on 4D. Let's see if he's allowed out of his room tomorrow? I will ask at rounds in the morning. He is coughing very infrequently now, and since his chest x-ray came back looking so good, there should be no reason for him to remain in iso for much longer. Here's hoping anyway :) He was able to escape his room very briefly today when we took him down for chest x-rays. He enjoyed a short ride in his stroller with a portable O2 tank in tow, but of course we passed the playroom on the way back to his room...and the begging started again. At least it was only begging and not kicking and screaming this time!
Please keep praying for our little fighter.
Mel:)

Sunday, March 20, 2011

God is our refuge and strength,
an ever-present help in trouble.
Therefore we will not fear, though the earth give way
and the mountains fall into the heart of the sea,
though its waters roar and foam
and the mountains quake with their surging...

The LORD Almighty is with us;
the God of Jacob is our fortress.

Psalm 46: 1-3, 7


The above Psalm is one of my favorites. It was good to sing from part of it in church this morning and also celebrate the Lord's Supper with the communion of saints.

It was also nice to have a bit of a break from the hospital life so that I could go home and spend some time with our 3 other kids too, especially considering I spent much of their March Break in the hospital with Tyson. I was able to get a ton of laundry done too, since I had left a week's worth of laundry sitting at home in baskets....and I also did a quick vacuum to make myself feel better :) Very therapeutic weekend :)


Brian stayed with Tyson this weekend. When I left on Friday evening, Tyson still had the nasal prongs in addition to an O2 mask over his mouth and nose. Brian said it went relatively well overnight, but in the morning the cardiologists/nurse practitioner decided to take away the nasal cannulas altogether since he was tolerating the mask well. So he stayed on the O2 mask that morning and afternoon, but during his nap he started de-satting again. So they decided to put him on a full flow O2 mask...which forces more air into his lungs, and is much noisier. He was on 60% O2 for most of yesterday, but it has been turned down to 50% for all of today. Once it gets down to 25% flow, it is much like having 2 litres of O2 through the nasal prongs again. So if he can tolerate the O2 going down 10% per day....then he should be able to tolerate the nasal prongs back again by Wednesday or Thursday??? Right now his sats are sitting comfortably at about 72.
Because the O2 mask has a relatively short leash, he is tied to the bed a little more now. He seems to be fine to play with his toys in his bed, or watch tv or read books. But it's still good for his healing to get him out of bed a few times a day. When he's chillaxing watching tv, he's got one knee bent up and the other ankle crossed over his bent knee...totally chilled out :)
Tyson is actually co-operating quite well considering he has to keep an annoying mask over his mouth and nose full-time. He can still suck his soother under the mask while he sleeps, and he moves the mask down to take a bite to eat or drink from his sippy cup, and then replaces it over his mouth when he's done. A. Ma. Zing.
It was nice to see his happy, goofy personality back again today. He LOVED that Braden, Merrick, and Kenya came for a visit. I am glad that he is a happier boy now than when I left on Friday. I am looking forward to a good week with him.
As far as company goes, I have visitors coming Tuesday and Wednesday, as well as Tuesday & Wednesday evening. If anyone wants to come up Thursday or Friday, you are more than welcome!
That's all for now :)
Mel:)

Fri. March 18, 2011

3:30pm
Tyson is starting to get extremely frustrated that he isn't allowed to do anything. And frankly, so is his mother. I am so claustrophobic now, it's not funny. We can't have the door open, even a crack. No opening windows, no opening doors, and poor Tyson can't go outside the room at all. (I at least can sneak out when he's sleeping to grab a bite to eat or some fresh air.) We have done all the puzzles, read all the books, blown an entire bottle of bubbles...and watched enough Treehouse to drive Mama to the nut-house!
This morning a lady visited the hospital with her dog and was letting the kids pet him. She knocked on the door and started to come in. Tyson of course was thrilled to see a "goggy!" But at the last second, the lady saw the sign on the door saying that Tyson was sick, and she immediately pulled the dog out of the room and said, "I'm sorry I didn't see the 'droplets' sign, we're not allowed in here." And she yanked her dog out of the room just as Tyson was about to pet him. She apologized over and over, but seriously, couldn't she have read the sign on the door BEFORE entering? Tears filled my eyes, realizing now that Tyson has been shafted again, and realizing that *I* have to calm him down again. I should have called this lady back and let HER calm Tyson down after not being allowed to pet the dog. I should have let HER be the one get kicked and slapped in the face because he was so upset that the dog got ripped away from under his nose. He just doesn't understand. I should have let HER try to explain to my 2 year old why he can't go out to the playroom to play, or why he can't pet a dog when everyone else can, or why he can't enjoy events going on around the hospital while all the other kdis can, why everyone has to wear a gown and mask when entering our room, and why our door remains closed tight every single second of the day and night.
Despite the fact that he is cooped up in his room, Tyson is in a better mood today than yesterday, and he seems to have a bit more energy. He is still only satting on the edge of 70. I did see a 73 and 74 today, but only while he was sleeping. When he gets out of bed to play, he sats 55-60. The nurse practitioner thinks that the reason he sats so low when active is because the blood is shunting through his fenestration, so she said not to worry if his alarms go off everytime. So now we sit on the play mat in the room with him satting 55-60 and the alarms dinging the entire time.
The NP also is going to refer Tyson to a respirologist, so we can have him assessed with regards to his "asthma" or "reactive airways" or whatever you want to call it. He coughs all winter long and always seems to have wet lungs. It's hard for anyone to really know what to do about it. His pediatricain thinks he will outgrow it when he's 4 or 5.
Tyson's "just in case" IV line plugged today, so they pulled it out :) Now he has two free hands to eat, drink, and play. I am hoping he is "allowed" to have a bath tonight now that his IVs are out.
His INR level is back down again so we can start him on coumadin again tonight. He's really not eating well at all so I'm not sure how that will go but we'll see.
It's not likely that we're getting out of here anytime soon. The NP said that Influenza A is a nasty bug to catch for a healthy person, let alone a person with single ventricle, and only one good lung. First he has to get well enough that the sats get back to where they should be (80s) and THEN he has to be weaned off the O2. Praying for patience in the meantime...
10:30pm
Brian is staying with Tyson at the hospital for the weekend and I am at home with my kids. (Well, not all of them, I am picking Braden and Merrick up in the morning.) It was time for a break from the hospital. I am so in love with the man I married; he is willing to do whatever it takes to make this rollercoaster easier on us all. He stayed home with the 3 older kids on Monday while I took Tyson to the hospital, then he came up to Sick Kids to be with Tyson and me on Tuesday and Wednesday, then back to work for Thursday and Friday, and now he's taking his turn with Tyson for the weekend. I will see you on Sunday babe! :)
Tyson started de-satting some more during his afternoon nap while I typed up this first update. He was sitting at about 62-64 the entire time he slept. Usually it is typical for kids to de-sat when active and to have higher sats when sleeping. Once he awoke, the sats were even worse, dipping into the 50s several times. We keep encouraging and encouraging him to cough (and bribing him with candy) but it seems like he's all coughed out. He sounds really good today, cough-wise. There doesn't appear to be much left for him to cough out. Physiotherapy on his lungs was stopped today because he has such a good cough, and he's up and moving around again. It's more important to have the physio when he's inactive and lying in bed all day.
So......why the low sats? A respiratory therapist paid us a visit and I asked why they can't just turn up his O2 from 2 litres to the 4 litre maximum? The reason is that they don't like kids under age 2 to be on more than 2 litres of O2 through the nasal prongs (castulas) because then too much air is being forced through their tiny nostrils and they can get very dry. So she suggested putting an O2 mask OVER the nasal prongs to see how his sats improve. It worked! His sats immediately rose to about 75. So now he has the O2 prongs up his nose as well as the O2 mask over his mouth and nose. Let's see how well he sleeps for Brian tonight....
So as you can see, home is not in the immediate future for Tyson :( It is possible that he can all of a sudden turn a corner and be on the mend soon...but he will be there at least another week I think.
Brian and I are trading duties again on Sunday night. I just needed a break so that I can re-group for another long week ahead.
Please keep Tyson in your prayers. And pray for patience for Brian as he entertains a two-year old all weekend :)
Mel:)

Thurs. March 17, 2011

2:30 pm
Tyson had a good sleep last night, despite the fact that the nurse had to come in twice to do vital signs (12am & 4am) and once to give his IV Lasix (6:30am.) He managed to sleep through it all.
this morning he was out of bed for a while, playing in his room. The physiotherapist (who works on loosening up the mucous in his lungs) lent us a play mat for the floor so he can get out of bed and play on the floor. Since he's not allowed in the 4D playroom because he may infect other children, we are quickly getting bored. We blew some bubbles this morning and Clutter the Clown came with her bag full or toys and tricks. I've been reading him the same books over and over, and Mom is getting pretty sick of Treehouse....

Although his lungs sound like the are clearing up nicely, he is still coughing a fair amount. His sats remain right on the edge of 70, even on 2 litres of O2, dipping to low 60s when he get mad or has to cough. I am disappointed that the sats are so low still even on O2. They should be back in the low 80s at room air (off O2) before he can go home.

One of his IV lines came out yesterday so he has one free hand, but the other line has to stay in "just in case." The antibiotics have been discontinued because 3 days of IV antibiotics is like a week of oral antibiotics. At least now we can get rid of the IV pole in our room; its alarm went off twice last night because the line was kinked. Tyson likes to sleep on his side, but the IV doesn't like that. Well at least it won't wake us up anymore!

He's been switched to oral Lasix to help him pee out fluids. He is way less puffy now than he was yesterday. The swelling is almost all the way down and he lost almost a kilogram of fluid from yesterday to today.

The INR level was at 4.0 today, but the coumadin will continue to be held until at least tomorrow. He is starting to eat again so that should help him maintain a healthy INR level.

Overall his mood is what you'd expect from a sick two-year old boy. Grumpy and uncooperative most of the time. He's back to smacking me in the face regularly - good thing his Mama loves him so much :) It will be so nice to have my happy boy back again. I can hardly remember who he is anymore...although a small part of his personality came out when Clutter the Clown came to visit :)
9:00pm
Tyson's mood has improved since this morning. He wasn't too thrilled that we had to wake him up for his physio appt this afternoon and he remained in a snit for about an hour afterwards. Once he caught on to how to blow bubbles and pop them before they blew away, he was actually laughing. Laughing, I say :) We've just been hanging out, spending lots of quality time together reading, doing puzzles, colouring, and blowing bubbles. He even spent some time walking around the room today, although he is still very wobbly, like a baby calf learning to walk for the first time. We were able to take off his Ecg leads, so there are a few less wires attached to him. He still has his sats monitor attached to his big toe, and his O2 prongs attached to him with the tubing above his head. Unfortunately, the cables aren't too long so he can't go too far when playing in his room, only about 3 feet away from his bed :( He was pointing at the door today asking, "Play? Play toys?" He so badly wants to go to that playroom! When I told him he can't because he's sick, he started crying and stamping his feet....poor guy. Well, at least he has the desire to play again, that is a very good sign!
Thanks for all your prayers :)
Mel:)

Wednesday, March 16, 2011

Rejoice in the Lord always.
I will say it again: Rejoice!
Let your gentleness be evident to all.
The Lord is near.
Do not be anxious about anything,
but in every situation,
by prayer and petition,
with thanksgiving, present your requests to God.
And the peace of God,
which transcends all understanding,
will guard your hearts and your minds
in Christ Jesus.
12:30 pm

Tyson is stable in the O2 nasal prongs, though his sats are still only very low 70s. When he gets upset or he has built-up mucous, they dip into the high 60s. Usually a good cough can clear him up and bring his sats up again.

There is talk about him moving to Step-Down today. They have taken a chest x-ray first, because the air entry into the left lung doesn't sound quite right yet. So we have to wait for the chest x-ray to come back ok first.

The nasal swab test that was done yesterday came back positive for Influenza A, which is basically just a flu/common cold. I'm still a litle skeptical that a common cold can actually wipe Tyson out THAT badly that he gets put into Critical Care!? I am not holding my breath for a clean x-ray....it seems to me there has to be something more going on. The reason I feel this way is because he's been coughing for so long. But hey, I'm not a doctor, what do I know? :) They are keeping him on the antibiotics anyway as a precaution, which I am ok with since his left ear was infected anyway. Hopefully the antibiotics will help get rid of all the garbage he has in his system right now.

The Ng tube I protested against came out last night at our request. The nurse on last night was kind enough to sympathize with our opposition and took it out as soon as he woke up from a short nap. Now to get him drinking and eating more. He is pretty puffy from retaining fluids and will be started on Lasix to help him pee some more of the fluids out.

That's the update for now. Tyson is relatively co-operative and content. He loves t.v. so that is a plus! It makes it easy for us to leave him at night when we retire to get some sleep. Last night we told him, "Mom and Dad are leaving now to go to sleep, we'll see you in the morning ok?" And he goes, "Otay." Then we give him the speech about listening to the nurses and no screaming, and be a good boy. Apparently last night when he asked the nurse for a drink he was very polite and asked for, "Juice. Please," and then a "Tan-too." That's my boy :) He is coping well, but has expressed his desire to go to the playroom on 4D and play with the Thomas trains :) We tell him he can do that as long as he keeps coughing when we ask him to.

5:00 pm
TYSON MADE IT TO 4D! (CARDIOLOGY WARD FLOOR)

The chest x-ray came back looking a little worse in the left lung than his x-ray from yesterday. Despite the x-ray, he was still considered stable enough to graduate to the cardiology ward floor. He does sound very phlegmy and is receiving physiotherapy on his lungs twice a day. He has a very good cough so that works in his favour. He also started to eat again today so once his strength builds up from the sustenance, I anticipate that he will continue to clear out the lungs on his own.

Tyson is still pretty sick and has been lying flat on his back since Monday. I am hoping that tomorrow I can get him out of bed and bearing some weight on his legs? Today he couldn't even stand on his own when it was time to weigh him. He is still pretty O2 dependent so he will probably be confined to the bed for a few days yet. Hopefully in a few days, once he has a bit more strength we can take him to the playroom that he so badly wants to go to!

I looked up Influenza A online and it appears that one complication from it can be pneumonia. Hopefully he can fight hard and keep the pneumonia away.

Tyson is sleeping peacefully now but I probably won't get another chance to blog again tonight. Brian left about an hour ago to go back to work tomorrow. It's so nice to have him around when Tyson is in Critical Care. Once Tyson is more stable, than I am more stable :)

Thanks to everyone who is helping out with our kids. It's their March Break so it's important that they have time to unwind and have some fun. Tyson sure knows how to get sick when the older kids are home for holidays, doesn't he? LOL

If you need to get a hold of me, you can call 4D directly at 416-813-6901 and we are extension 3632. The best time to call is mornings between 9am-1:00pm. If there is no answer, I may have stepped out to grab a bite to eat, so you can try again a little later. Tyson would probably sleep in the afternoon so it would be best to wait till after 4or 5 pm to call in the afternoons.

That's all for now!
Mel:)
10:00pm
So it turns out that because Tyson has the flu, he is not allowed to go to the 4D playroom even if he was strong enough. (Right now he's not even strong enough to lift the Thomas train I borrowed from the playroom for him...so it would be a while before he could play anyway.) Tyson may not use the playroom until he is completely asymptomatic, which will likely mean he won't get to play there until it's time to go home. It's going to be a long stay for me...but at least we have a room with a view to the outside world so there is some natural light coming in. I feel bad for him because in CCCU we were bribing him that the more he can cough, the sooner he will go play with the Thomas trains in the playroom....and now he won't even be able to go there :(
He is being isolated because he is very contagious and our door must remain closed at all times so he doesn't spread his infection to others. When in isolation, nurses must wear a gown and mask every time they enter our room (same as in CCCU) because they don't want to spread Tyson's germs on to other patients.

Tyson on CPAP in Cardiac Critical Care Unit




Mommy shushing him as they poke him for blood



Once he was off CPAP it's easier to hold him.
Back in his Mama's arms, where he belongs :)
Sleeping peacefully
Trying to rest on 4D

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.
Mel:)



Mon. March 14, 2011 - Tyson is in Cardiac Critical Care Unit

Tyson is in the Cardiac Critical Care Unit at Sick Kids. He is on CPAP (in between O2 mask and a ventilator.) Poor guy worked VERY hard to breathe today....an echo this afternoon showed that at this time it does not appear to be a cardiac issue (they don't think...) but more likely a form of pneumonia or lung infection.
Useless fact 101: It takes 16 minutes to get to Sick Kids in a helicopter....

Please pray for our Mr. T