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!

New Year's Eve - Wednesday, December 31, 2008

New Year's Eve in Sick Kids Hospital. Hmmm.....well at least my hubby is here with me! Thanks Aunt Mandy for watching our kiddies tonight! Hopefully we aren't too much longer. We will know more later today hopefully.
Tyson was a bum yesterday evening. He had a snack at 8pm and then stayed awake till 11pm, at which time we gave him another bottle. Thinking he would sleep really well that night, right? Well... then he spit up pretty badly that he needed a bath, which woke him up again (at 11 pm)! Then he spent some time being content and looking around the room but then didn't settle well to sleep so we fed him another bottle again at 1:30 am. He finally settled to sleep by 2 am and then we didn't hear from him again until 6 am. That felt like a great sleep! He was able to go 4 1/2 hours between feeds, but it would have been nice if it was a little earlier in the evening! LOL I guess beggars can't be choosers.
This afternoon Tyson had some bloodwork done to check his enoxaparin levels (the injection he gets in his legs.) They just want to double check that his levels are ok otherwise they will adjust the amount he needs to have injected.
Later today the surgeon is going to have a look at the incision again and give us a rough plan of what to expect as far as how many days he needs antibiotics thru IV. The nurse practitioner mentioned this morning, it could be 5 days from when they started. That means we are here till Saturday-ish. *sigh* This is best for Tyson, but not so easy on us. We kinda liked being home and getting into a good routine before Brian has to go back to work and the kids go back to school. (we were also very spoiled to be home for Christmas!) But the incision is healing well and the more IV antibiotics he gets, the better chance of it not re-infecting again once we are at home.
So hopefully that means that once we are home, we can stay home!
I will keep you posted.
Have a great night everyone if you don't hear from us again today!
HAPPY NEW YEAR!
Brian, Mel and Tyson

Tuesday, December 30, 2008

The LORD is my rock,
my fortress and my deliverer;
my God is my rock, in whom I take refuge.
He is my shield and the horn
of my salvation, my stronghold.
Psalm 18: 2

The doctor said that Tyson's incision looks better today. Personally I think it looks worse because it seems to be splitting open a teeny little bit. The doctor says that is a good thing because it means the drainage is finding its way out, otherwise they would have to slit it open to let the drainage out. The redness is still there but the swelling has gone down because it is all draining out like it should be. The antibiotics seems to be taking effect and we give thanks for that! They say the incision will repair itself again in due time.
Tyson had a miserable night last night because he was in a fair amount of pain. He woke up every hour or two screaming and wrenching his back in pain. He was inconsolable when we picked him up. We fed him each time he awoke to see if that would calm him down but I think he was at a point where he didn't know what he wanted anymore. We discussed with the doctor on rounds this morning about ordering him Tylenol every four hours to stay on top of the pain instead of trying to overcome it when it hits. He was very sleepy this morning and not interested in eating much at all because he was trying to catch up on his sleep that he should have been taking last night. This afternoon was much better and he is waking for feeds again. Hopefully tonight he will be more restful and we can have a better night of sleep.
Tyson is not on any monitors anymore, since he hasn't been at home either since last Monday. So it is nice to be able to walk around the hospital with him and get out a bit without feeling like we have to rush back in case he awakes. The only thing is, we have to drag his IV pole around with us, but at least we can get out and do our own thing somewhat.
So the doctor is pleased with the way the incision is healing but there is a possibility we won't be home tomorrow yet. It could be a few days on IV antibiotics and then at home he would have some oral antibiotics.
Wishing you all the Lord's blessing in the New Year!
Brian, Mel and Tyson

Baptised on Sunday and back into Sick Kids on Monday!

"But seek first his kingdom and his righteousness,
and all these things will be given to you as well.
Therefore do not worry about tomorrow,
for tomorrow will worry about itself.
Each day has enough trouble of its own."
Matthew 6: 33-34

Yesterday was a beautiful day! Rev. Agema was found willing to preach in Orangeville so that Melanie's baby girl Mikayla and our son Tyson could receive the sign and seal of the covenant. Rev. Agema preached a wonderful and very timely sermon on how God protects those to whom He gives His seal. We do not need to worry about tomorrow when our Heavenly Father is watching over us and protecting us. When harm or troubles come our way, we do not need to fear because God is always with us. We have definitely seen how God protects His children! It was an emotionally draining day and we are so glad to have shared it with many of you. We are sorry that we didn't get to see or talk to many of you, but we are so thankful to have shared this day with you. It was especially nice to see many family and friends who travelled to Orangeville to share this day with us. Too bad we didn't get a chance to chat as much as we would have liked, because boy oh boy, baptism is a big and special (and busy) event!

On Saturday evening's post, I had mentioned that Tyson's incision site was a little red and oozing. The nurse from CCAC came on Sunday morning to take a look at it and she had said it definitely looked like there was something going on, but it could wait until our clinic appointment at Sick Kids on Tuesday to be looked after. However, if Tyson developed a fever or if the incision site appeared to get worse, we were to have Dr. Murphy have a look at it. In the meantime we were covering it with polysporin and gauze and watching out for fever.

Well this morning when we replaced his gauze, it did appear to be worsening, with a pretty angry looking incision site, and more oozing than before. So since we were coming into Sick Kids for a clinic appt on Tuesday, I decided to call Sick Kids to see if it should wait or if I should try to get in to see Dr. Murphy. The nurse practitioner at Sick Kids actually arranged to have our clinic appt re-scheduled to Monday instead of Tuesday, even the scheduled x-ray and echocardiogram too.

So we brought our other three children over to Rob and Anne's house (for Kottelenberg Santa Claus and skating at Gage Park) where they will also be spending the night. They are happy to be with their cousins and I am sure they will have a great time opening presents and skating in this wonderfully mild weather.

We arrived at Sick Kids at about 1:30 pm where Tyson had his x-ray, echocardiogram, and then was seen by the nurse practitioner and the cardiologist fellow on call. The fellow (practising cardiologist) recommended that Tyson be admitted back onto floor 4D for 48 hours of antibiotics by intravenous. He wanted to start a more aggressive treatment of antibiotics than just an oral or topical antibiotic, so that the infection does not spread. It is nice to know that we have caught the infection early on, and it does not appear to have spread into his sternum area. So far it looks like it is just a surface infection.

So here we are again! Hopefully not for too too long this time. Tyson has been fussy because of the pain in his incision site but they have given him some Tylenol for pain and he seems to have settled quite nicely now.

On the plus side, the dietician was extremely pleased with how well Tyson has been eating and has ordered more Portagen for us to take home, since the 6 cans she had ordered us will not be enough given the amounts he takes in per feeding. She also recommended trying to increase his intake from 80 mls to 90 mls if he can handle it, so that he can maybe go longer than 2 1/2 - 3 hours in between feedings. We no longer have to record his feeding times, amounts, and amount of wet diapers, etc because Tyson has got the eating thing all figured out. He was weighed this afternoon at 3.9125 kilos, which I think is about 8 lbs 12 oz.

We also discussed with the dietician the possibility of starting breastmilk on Jan. 8 instead of Jan. 13, since according to my record, he began portagen on Dec. 10, not the 15th like they have written down. Well, since their normal regiment of portagen is 6-8 weeks and we have already shortened it down to 4 weeks, they don't want to push it and we will have to keep the Jan. 13th date for when I can begin breast feeding. Nice try though, eh? :)

Tyson is doing well. He is cuddling so nicely with his Daddy right now. Hopefully he sleeps a little better tonight than he did last night (up every two hours last night!!!) because now he is on Tylenol for pain relief. His sats are down a bit (high 60s) but the doctor thinks that he is probably just taking shallower breaths since his chest is a bit sore. So he has so room air oxegyn through his nose right now and hopefully once his chest feels better, they can take him off that and see how his sats improve.

We did notice yesterday that whenever Tyson coughed or sneezed, he whined a bit afterwards. Brian and I didn't really think about it being related to his incision but thought maybe he was coming down with a cold. Which would not be good either, but he was around quite a few people through the holidays and on his baptism. It is so hard to keep him away from people, since everyone of course wants to look at him, but we have to stick to our guns about keeping him away from people as much as possible for now. His immune system is compromised right now and if he were to catch anything as small as a cold, it could take him a long time to recuperate considering what he has gone through. I apologize to everyone who wants to hold him and touch him but we cannot have him getting sick. I hope that you all understand. We also won't be taking him to the church nursery until the winter months are over, so it means Brian and I will be going to church separately for a while. I hate doing that, but we just can't take any chances with this. He has had quite the life already for a 5 week old baby and we want to see him get btter, not worse. So please understand where we are coming from.

We also have started a new routine in our house that whenever we come in from the outdoors, we wash our hands. When our kids come in from playing outside or we come in from getting the mail or the kids come home from school, we will be washing our hands. There's lots of germs and bacteria floating around outdoors and the doctors say that this is a great way to prevent infections and colds for Tyson. So if you come to visit us in the next few months, do not be surprised if we ask you to wash your hands upon your arrival. Please understand and respect our wishes in this regard. It may seem a little over the top to some of you, but again, we want to see him get better, not worse. Thanks for your understanding.

That is the update for today. We are thankful that we came in when we did and caught the infection in time so that it did not spread too far. We pray that the antibiotics will have the desired effect and we can be home again in no time!

Mel:)





Saturday, December 27, 2008

It is soooo good to be home for the holidays! We enjoyed a wonderfully quiet Christmas day with my Mom and Dad Spanninga and Mandy. The kids enjoyed some snowmobiling, we played some cards, and my Mom and I cooked a nice turkey dinner. It was exactly the way we wanted to spend the day. Nice and quiet, and together as a family.

Tyson is doing well. He seems to be drinking an awful lot! He takes 80 mls at a time, eating every 2 1/2 - 3 hours round the clock! Brian has been VERY helpful and even gets up for one of his feedings in the middle of the night. One of the advantages of bottle feeding, I was beginning to think there weren't any at all! I might as well take Brian up on his offer while he is on holidays, because once I am nursing Tyson, it will all be up to me!

Tyson was 7 lbs 12 oz on Tuesday when the nurse came over. This morning he weighed 8 lb 4 oz....so he is steadily gaining!

He seems to be a pretty happy baby, although he is quite demanding because he is hungry so often. I've tried to give him more than 80ml each time but he often ends up spitting it up.
Right now he is squawking for some more food so I better get his meds ready, feed him, and get him (and me) into bed.

Tomorrow morning a home care nurse is coming over to have a look at his incision site. She was supposed to come on Monday morning but I asked them to come in earlier because the incision seems to be oozing a little. Nothing too concerning, but it should be looked at. We have covered it with gauze so that his clothing does not rub against it and cause discomfort.

Tomorrow afternoon Tyson is going to be baptized along with his new cousin Mikayla! We are happy that the Lord has provided for Tyson in so many ways! Excited about his big day tomorrow!

That's all for now,
Mel:)

HOME AT LAST!

Tuesday, December 23, 2008

"Your love, O LORD, reaches to the heavens,
your faithfulness to the skies.
Your righteousness is like the mighty mountains,

your justice like the great deep.
O LORD, you preserve both man and beast.
How priceless is your unfailing love!

Both high and low among men find refuge
in the shadow of your wings."
Psalm 36: 5-7

YAY! WE ARE HOME!

Monday morning at rounds the doctors decided we could go home that day! Usually they like to see babies eating well for at least 48 hours before they discharge them but since Tyson had a really good weekend and he was eating well for just over 24 hours, they let us go home earlier. They made us promise that if Tyson stopped eating so well at home, we would re-insert the tube. Of course, we agreed and would definitely do what we need to do in order for him to grow healthy and strong. The doctors also gave us the "option" to stay one more night if we were more comfortable with that. (lol!)
Jim and Debbie were in Toronto yesterday because Deb had an appointment to go over the results from her surgery. They dropped in for a visit and took us out for lunch (ALL of us!) and we enjoyed a nice time with them.
It was nice that we received the news that we could go home while Brian was still around in the morning, otherwise he would have had to drive back and pick us up. So, although I didn't get to phone him and say, "Honey, we're coming home!" , we received the news together and shared the exciting moment together as a family. The kids were jumping up and down in the cafeteria at breakfast because they were so excited!
We didn't get home as early in the day as we had hoped since we had to wait around for a few hours for Shoppers Drug Mart to fill out Tyson's prescription. We made it home last night at about 9 pm. Mom and Dad Spanninga met us at our house since we knew things would be pretty hectic with unpacking the van with three weeks' worth of stuff, getting kids into bed, feeding Tyson, administering his meds, etc.
MAN DOES IT FEEL SOOOOO GOOD TO BE HOME!
And in time for Christmas!
And without Tyson's feeding tube!
GOD IS SO GOOD!
God has answered all our prayers. Tyson not only made it through this serious surgery, he also progressed at a good pace, came home without the feeding tube we dreaded, and in time to spend Christmas with his family! He certainly doesn't look at all like the sick little baby we saw
the day of his operation!
Today was a great day. The morning was VERY busy with getting kids ready, breakfast, medications, etc. The boys are both home from school now for Christmas holidays so it is a bit more work, but Braden and Merrick are both pretty good helpers.
Mom Kottelenberg came over for the morning to help me with a few things around the house and Dad Kottelenberg came over and did some snowmobiiling with the kids. He actually drove over a snow mobile that we can keep! The boys were pretty thrilled about that!
Mandy came over for a visit too so it was nice to have her help with lunch. We've also asked Mandy to do the honours of holding our little guy for baptism and she was pretty tickled about that!
Tyson is continuing to do well. He still does throw up about once a day (instead of every time he eats) but this will get better once the meds take their full effect. Now that the feeding tube is out, that should help a fair bit too. He is a pretty happy baby so far and his brothers and sister love him to bits! He is sleeping in a cradle in the living room until he begins sleeping longer at nights, and then we have to figure out which room we are putting him in.
Tyson is on a number of medications for the next little while. The most important (and frightening) one is Enoxeparin. This is a needle that we inject into his leg twice a day. This drug is an anti-coaggulant (blood thinner) that will prevent his blood from clotting around the BT shunt the surgeons put in his aorta. From what we understand, this drug can be discontinued after his second surgery since the surgeons will then take out the shunt and do something more permanent. (The reason they cannot do something more permanent in the first surgery is because they have to wait till the lungs are more developed.)
It took a while for my mind to get over the fact that I would have to poke my son in the leg with a sharp needle twice a day, but you just do what you gotta do! After I did it the very first time, my eyes filled with tears and Brian was laughing at me because there I was crying and Tyson let out one little howl and that was it! It obviously hurt me more than it hurt him! And tonight when I gave Tyson his Enox, he didn't even flinch! So already he is getting used to it.
Tyson is also on two different meds to prevent reflux (Ranitidine and Domperidone), one diuretic to encourage passing of fluids (Furosemide or Lasix - makes him go pee), Captopril to keep his blood pressure stable (very common after heart surgery), Tri Vi Sol (Vitamins A, D and E) and Folic Acid. The last two he can go off once he starts taking breastmilk and hopefully the other he can discontinue once he is stronger and more stable. The Enox injections would continue though until he has had his second surgery.
Tyson will continue on the portagin feeds until January 13. That is the date the doctors have said I can start breastfeeding again.
Because of Tyson's Enoxeparine injections, we qualify for some home care from CCAC (Community Care Access Centre.) A nurse came today and weighed him, listened to his heart rate, breathing rate, checked his incision site, reviews his eating routines, and basically makes sure things are going well. We are documenting how much he drinks, when he spits up, how many wet diapers he has, etc. since it is important to know that he is getting adequate nurtition and not burning too many calories. We were happy to hear that we would be getting some home care, since this makes us more confident taking him home and being on our own again. It also helps knowing that someone is there organizing things for us, helping us remember to book appointments, and directing us wherever we need to be directed.
We will be heading back to Sick Kids again next Tuesday for some appointments. He will be having another chest and lung x-ray, another echocardiogram of his heart and a visit with the dietician to monitor his weight gain. From there they will decide when his next appt will be, and he will be seeing Dr. Murphy regularly as well.
Then on February 4th he has a full-study echocardiogram scheduled (the same scale one-hour echo he had on that Monday he was admitted to Sick Kids) and a follow-up appointment with the Staff Cardiologist Brian McCrindle.
Tyson now weighs 7 lbs 12 oz, (which is still less than his 3 day old cousin Mikayla!) but in no time he will begin putting on weight and becoming much stronger. We were given a baby scale to use for the first month so that we can weigh him every day and be confident that he is gaining well. He is supposed to take in at least 350 ml of portagin daily and Tyson is taking almost 500 mls daily. So even if he does spit up an entire feeding once a day, he will still be doing fine. the baby scale will also come in handy once I start nursing again, since I can weigh him before he eats and again after he eats to get an accurate measurement of fluid intake.
Wow! I still can't believe I am typing this blog post from my own computer at home! It does take a little longer on dial-up but we are getting high speed soon. The modem is sitting right here beside me but it's just a matter of hooking it up. Soon enough.
Tomorrow my parents are coming for a visit (and will also be swinging around the corner to see their other new grand-daughter!) Brian also hopes to be home early in the afternoon. I am looking forward to a wonderful Christmas season with our FAMILY. TOGETHER. AT LAST!
GOD IS SO GOOD!
Brian and Mel
Braden, Merrick, Kenya and Tyson

Day 17 Post-Norwood - Sunday, December 21, 2008

"Praise be to the LORD,
for he has heard my cry for mercy.
The LORD is my strength and my shield;
my heart trusts in him, and I am helped.
My heart leaps for joy
and I will give thanks to him in song.
The LORD is the strength of his people,
a fortress of salvation for his anointed one."
Psalm 28: 6-8

We seem to be taking all our texts these days from the book of Psalms. In the Bible, God's people often used psalms to praise God, cry out to God for help in time of trouble or despair, and to thank God. We have chosen these psalms because they are full of expressions of praise to our Almighty God for the wonders He has done! We give thanks to Him every day for guiding us through (more like carrying us through) these difficult times.

In the Bible God's people also sang the psalms when they were together to worship God. Today we were able to sing and worship with the Toronto Canadian Reformed Church once again and celebrate the Lord's Supper with them too. What a privilege and blessing to be able to experience the communion of saints amongst a people who don't really even know us, but are thinking of us and, most importantly, praying for Tyson! Rev. DenHollander has such a gift in his preaching and speaking and we have felt warmly welcomed and loved among the congregation there. Although our circumstances have allowed us to attend only in the mornings, there were many times that people's doors were opened up to us and we definitely felt at home while we were there. The Lord willing, we will be able to worship with our home congregation in Orangeville this coming Sunday. We are really missing our fellow brothers and sisters in Christ from Orangeville. It has been 3 weeks since Brian has been in Orangeville church and 5 weeks since I have been in Orangeville church, so we certainly miss everyone!

Tyson has been doing a lot better at eating. He was finally put on anti-reflux medication yesterday afternoon and by early this morning he began drinking the full 2 oz bottles! He still spits up a little, still a little more than than the average baby, but he is showing good interest in the bottle! This is partly because we have given him more time in between feedings, and also due to the anti-reflux medication he has been on. We are so thankful that he is progressing in this way because now there is a chance that he can go home "sans Ng." :P

I was beginning to finally accept the fact yesterday that he most likely would be going home with a feeding tube and so we made an appointment for training on Ng tube re-insertion. Because I have been overwhelmed with all the responsibilities that I have to take on already (running the feeding tube, cleaning the tube, preparing medications, Enox needle injections, etc.) I asked Brian if he would be willing to learn how to re-insert the tube should it ever come out. The chances of it getting accidentally pulled out are slim so the chances of having to re-insert it are slim, but we needed to have one of us learn how to do it so that the doctors can be comfortable sending Tyson home this week. It is not an emergency situation that the tube get re-inserted immediately after being pulled out, since Tyson can take food orally and he wouldn't dehydrate quickly. But it would save us a trip to the ER if Brian or I knew how to put it back in. So I am thankful that Brian was willing to take on this responsibility and he seemed to be a pro at it so whew! One less thing for me to worry about! Brian was taught how to take the tube out this afternoon and you can see him hard at work in this picture!
So..... if Tyson continues to eat well and he is consistent in taking the entire bottle every time he eats, we can most likely go home with no tube in. I heard the doctors muttering on rounds one morning something about "possibly Tuesday or Wednesday." So we don't have a confirmed date yet but it looks like, as long as things don't take a turn in the wrong direction, we may be home in time for Christmas afterall! I will most likely have a definitive date by morning, as long as the doctors are happy with Tyson's progress. We personally are ECSTATIC with his progress! Brian and I were just looking back at the pictures of him immediately following his surgery and were blown away with how far he has come! It is sometimes hard to step back and see his progress when we are faced with challenges every day but we have so may reasons to be thankful and praise God for His goodness and grace in our lives!

Oh yes, Tyson's PICC line was removed on Friday afternoon. We had to go in to IGT (Image Guided Therapy) to have it removed. They froze his arm with a local anesthetic first and then had to dig out a small cuff that sits just below the surface of the skin. He has quite a hole in is arm now but baby's heal quickly and this isn't the only scar he will be left with! The PICC being removed is a big step in his recovery too because it means that Tyson is off all medications through IV, and it is also means that the doctors are confident that Tyson won't be needing any more bloodwork done to check his hemoglobin levels, gas levels, white blood cells, etc. So that is cool! Now the only thing he has invading his body is the Ng tube, (which hopefully can come out soon?)

We had a great weekend with our kids! Brian braved the storm on Friday afternoon and was down here by about 2:30 pm. We spent some time with them in the play park here in the hospital, but by far their favorite spot was Marnie's Lounge. This place is great for kids like Braden and Merrick, with air hockey, a pool table, table hockey (like fooz ball), computer games, crafts, and a Wii system. We also enjoyed the pool and the water slide at the Delta Chelsea Hotel. But most of all, we enjoyed being together as a family again. Even though the circumstances are different and we aren't at home yet, we had a great time. The kids are so proud of their little brother and they loved the cuddle time with him too. Brian and the kids are staying one more night in the hotel tonight and then they hope to head home in the morning. And then hopefully before long we can be together again, in our own home, and sleep in our own beds!



We are so excited that the end is finally in sight and that Tyson has come so far in his recovery! It was hard to have patience at times. The hardest day was Monday, December 1, the day we were hit with the news of his condition. Looking back, I can't believe we made it through that day! Of course we know that God guided us through it and He had this all in His plan for Tyson and us.

Another difficult day was the day of his surgery, the waiting....the fear of the unknown. It was also pretty scary when Tyson suffered a lung collapse following his extubation. Last week was tough when Tyson kept throwing up and we knew that his feeding difficulties was what was keeping us here so long.
There are also many days that we remember with great joy and gladness! Every day when we awake and can spend another day with our boy is a reason to rejoice and give thanks! Of course, the day he was born was a very special day for us. God blessed us with another covenant son!The day God helped him through the surgery and he came out of it alive and doing well. The day he was extubated and he could start breathing on his own, the day he looked up at my face and followed me with his eyes, the day he was introduced to a bottle and he moved up to the fourth floor. And now we are awaiting the day that I can call Brian and say, "Honey, come and pick us up, we're coming home!"

Please keep praying.
Mel:)



















Day 15 Post-Norwood - Friday, December 19, 2008

"I lift up my eyes to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip
he who watches over you will not slumber;
indeed, he who watches over Israel

will neither slumber nor sleep.
The LORD watches over you,

the LORD is your shade at your right hand;
the sun will not harm you by day,

nor the moon by night.
The LORD will keep you from all harm

he will watch over your life;
the LORD will watch over your coming and going
both now and forevermore."
Psalm 121

Yesterday was a bit of a slower day as far as Tyson's progress. He had spent a lot of time awake on Wednesday so he was very sleepy on Thursday. As a result, he didn't feed well and he ended up with more food in the Ng tube than taken orally. Two of the nurses have mentioned to me that Tyson's feeding is basically what is holding us here. Once he learns to eat well and we are confident that he is gaining as expected, we can go home. We have been praying hard that Tyson learns to eat well, and I must admit I am a little surprised at his slow learning when it comes to eating....of course I keep comparing him to my other three babies who all seemed to be good eaters right from the start. I have to remember that everything requires more energy for Tyson and that he is going to be a bit of a slower eater. (Slower than Merrick? Oh oh!)

Overall though, he appears to be a very happy baby, very content between feeds and falls asleep easily on his own. He spends a fair amount of time awake after each feeding, and goes right back to sleep after his nighttime feedings. He really only cries when he's hungry, which isn't very often since he gets fed every 3 hours right now and I think we wake him up before he has a chance to realize he is hungry. At doctor's rounds this morning I asked if we could go to more of a "demand feed" routine during the day and a stricter schedule at nights, since we seem to be waking him before he even realizes he is hungry and I think that is why he isn't too interested in the bottle. They have supported my request and we are "allowed" to give him more time to wake on his own during the day, as long as it isn't too much more than 3 1/2 - 4 hours between feeds. Especially since his whole feeding regime takes 45-60 minutes, is he really ready to eat again 2 hours later?

He also seems to throw up a fair bit, not just average baby spitting up. Cardiac babies are more susceptible to reflux, so I try to feed him more upright instead of laying down, and I lay him on his right side after feeding so that he can digest his food better. I spoke about that this morning too with the doctors on rounds and they want to put him on a reflux medication to see if this helps, and if he can show himself to feed well in the next few days, they may think about pulling his Ng tube to challenge him. Sometimes the Ng tube causes reflux so this may aggravate the issue. They are not increasing his portagen volume per feed, (because sometimes increasing the volume just increases the reflux problems.) However, they can increase his caloric intake by changing the "formula" of portagen. He still has to take in a certain amount of fluid per day so as long as he takes in enough fluids, we can stay on a "demand feed" routine during the day.
I probably won't be updating the blog every day anymore, it will depend on what progress there is to report. I didn't get to update the blog yesterday at all because it was a pretty busy day. In the morning Melanie and Jaidynn, Tanya and Kate, and my daughter Kenya came for a visit. Kenya is such a goof, she finally got to see her mommy and she spent the whole time being very sucky and whiny. She is only two afterall, and this is taking a toll on her too. Then Leo and Joni came later in the afternoon and Joni got to help the nurse changing the plugs on Tyson's PICC line. This is a sterile procedure so Joni got all decked out in hospital gown and all. Thanks Aunt Jones! Later in the evening my parents came and were tickled pink to get to hold their grandson.
Depending on how the weather goes, Brian and the other three kids are coming down to spend the weekend here with us. Tyson's case social worker arranged to get a complimentary room at the Delta Hotel right across the road from Sick Kids for Friday, Saturday and Sunday night so that the family can be together for the weekend. The boys are excited to finally get to see their little brother again and I am looking forward to us being together again. The hotel has a pool and there are a number of things for kids to do here at the hospital so it should be pretty fun. Brian is spending the nights at the hotel with all three kids (brave guy!) and I am spending the nights here with Tyson. We will be attending Toronto church on Sunday to celebrate Lord's Supper there.

So that's the update for today! Hopefully the demand feed routine will work out better for Tyson and he will show more interest in the bottle. Although this issue seems small in comparison to what he has already been through, we ask that you keep this issue in your prayers too. The sooner he learns to eat well, the sooner we can go home! The doctors talk about a discharge date of "sometime next week." I hope Tyson can eat well and we can go home without an Ng tube. This will be one less thing for me to worry about, especially with three other little ones at home.

Thank you all so much for your prayers and support. Brian and I can really feel that we are being carried through this ordeal in God's Almighty hand, and the prayers of righteous men ARE powerful and effective! Please continue to remember the needs of our family in your prayers.

Take care,
Mel:)

Tyson's Own Room on 4D

Wednesday, December 17, 2008

"But for you who revere my name, the sun of righteousness will rise with healing in its wings." Malachi 4:2

TYSON AND I HAVE A PRIVATE ROOM ON 4D!!!!

Last night after I had just finished updating Tyson's blog, I got the exciting news that we would be moving to a private room afterall! So Tyson did get to skip the "Step Down" room and we were moved into a private room at about 9 pm on Tuesday night! It isn't as big as the rooms at the Orangeville hospital and the bed is more like a couch. But nonetheless it is quiet and private, I get my own
bathroom, a phone, and a tv, but more importantly, I get to be near
my son all day and all night.

It feels so good to finally be involved in his care and as dumb as it sounds, I was happy to get up with him overnight and even happier when he awoke on his own crying for food this morning at 6:20 am.

We have a room right by the rising sun, so when I opened the blinds this morning, we enjoyed the beautiful rays of sunshine beaming into our room! It was a gorgeous and bright morning! I was happy to see God's glory in the beautiful sunshine too.

If you need to get a hold of me, you can call the Sick Kids floor 4D direct line at (416) 813-6901, press '2' for patient information, and then ask for Melissa in room #6. I should be in there most of the time but if you don't get an answer I am most likely out for a coffee, lunch, or on the computer updating my blog! If you don't get me right away, try again in half an hour or so.

Tyson is doing pretty well. The bottle feeding is going ok, but not spectacular. He takes between 20-30 mls orally before I have to add the rest to his Ng tube. The head cardiologist on this floor says that Tyson has a lot of work to do before we can go home, mostly just his breathing. She says he is still breathing quite fast and this can only get better once he gets bigger and stronger. He needs to keep eating and start putting on weight. The only thing I can do for him, as far as that goes, is help him eat on time so that he is taking in enough calories in a day, and maybe skip the bottle feeding in the middle of the night and put the portagen directly into his Ng tube, so that he doesn't work too hard at nights and can save his energy for eating during the day. She thinks he has a lot of work to do yet before we can count on going home for Christmas. I am a little disappointed by this news but I know that Tyson has surprised us in the past, so you just never know! I don't want to get my hopes up too high but I am still praying that we can spend Christmas at home.

Today I enjoyed a visit from Joanneke and her mom. I spent the rest of the afternoon quietly enjoying my son, smothering him in kisses, and praying that he continues to eat well.

On rounds this morning, the doctor mentioned that we would go with a 4 week course for the portagen, instead of the 6-8 weeks we were originally counting on. She will give me an end date so that I have a date in mind for when I can begin nursing again. I am excited to hear that news and am eagerly awaiting this day! This will also help with his weight gain.

It is very possible that if Tyson doesn't figure out how to drink enough from a bottle, he may still have the Ng tube once he goes home. I have already been taught how to do the feedings through the tube and how to flush it out afterwards, but I will also need to learn how to place the tube once it needs replacing or if it ever gets pulled out. This involves inserting it through his nose and making sure it gets placed into his stomach and not his lungs. I would have to buy a stethoscope so that I can hear the little "pop" that can be heard when a small amount of air is forced into the Ng tube. It's kinda neat to hear the "pop" but the thought of having to insert the tube myself is a little overwhelming! I guess I will need to learn, unless Tyson can figure out how to drink enough through the bottle.

Please continue to keep Tyson in your prayers, asking God that Tyson can learn how to drink well, so that he can put on some weight and come home soon! Please continue to pray for the rest of Tyson's family who need patience and strength to endure whatever God has in store for him and us.
Till next time,
Mel:)

WE'RE MOVING UP! Tuesday, December 16, 2008


"The LORD is my strength and my shield;
my heart trusts in him, and I am helped.
My heart leaps for joy
and I will give thanks to him in song."
Psalm 28:7



Today was another AMAZING day with Tyson's progress! This morning the nurses took out the arterial line in his leg and I also got to give him a bath. He actually is wearing clothes now too since he is no longer in the bed with the overhead heater but in a "real" crib now. We started bottle feeding him too! Once he can comfortably take at least 2 oz from a bottle, they will also take out his Ng tube. For now, he is taking about 1 oz at a time and the rest goes in his Ng tube. I am spending only 15 minutes at a time giving him the bottle, and then the rest will go into his tube. This is because they do not want Tyson burning too much energy on sucking and then he won't be interested in the next feeding.

Last night they gave Tyson a blood transfusion because his sat's were lowering and he wasn't getting enough oxygen. With all the bloodwork that they take all the time (every hour right after surgery, then every 4 hours, now it's down to every 12 hours) his hemoglobin level was low. So now his levels are back to normal and he is breathing well again.
This morning Vicki and Melissa W came to visit and they also took me out for lunch. It was nice to see them again. This afternoon Brian's parents came with Tante Hanna for a visit. This visit was a lot shorter than we had hoped for, since Brian's Dad helped me move things from my hotel room. I didn't get to see much of Mom or Tante Hanna but I am thankful that I got things moved out of my hotel room.

The plan as of this morning was that I would move directly into a private room with Tyson and skip the "Step Down" room altogether! This was because Tyson has made so much progress in the last 48 hours and he has pretty much done everything that he needs to do in Step Down (getting rid of tubes, introducing bottle feeding, etc.) But as of now, because of staffing issues, we will be moving to Step Down after all. This means he will be in a room with three other babies before moving into our own private room. I haven't checked out of the hotel yet because I know that there are always little glitches along the way. I didn't want to be left without a place to lay my weary head! So I will most likely be spending one more night in the hotel, it just means I have to take some minimal things with me since we moved everything over to the hospital already! LOL There is a possibility that there will be a place for me to stay on the fourth floor but nothing is ever known for sure until later in the evening.

Our Social Worker Mayola informed us that we do not need to check out of our hotel until Tyson is discharged, just in case he for some reason has to be moved back to ICU. Then we wouldn't want to be without a place to stay. So it looks like Brian and the kids will have a place to stay this weekend if they come up to visit, which is loosely in the plans, but nowadays we don't know anything for sure! We have requested a travel attestation to celebrate Lord's Supper in Toronto, since we will be missing it in Orangeville. Either way Brian and I will be in Toronto for the weekend, but we aren't sure yet about the kids. It all depends on where Tyson is.

So as of right now, Tyson is still in ICU but will be moving later tonight, and I will most likely be staying at the hotel again until we are in a private room. If all things go very well, we could very well make it home in time for Christmas, or shortly thereafter! We have been praying that we can be home for Christmas, for the sake of our family life. It would be so much better to celebrate and enjoy the holiday season if we were altogether. But we will have to be patient and wait to see if that is what God also has planned for us too!

I feel so encouraged and optimistic about Tyson's recovery today! Yesterday was a great day too, but considering Tyson's respiratory difficulties and the collapsed lung that Tyson struggled with on Saturday and Sunday, we are amazed at God's goodness and grace in his life! All praise and glory be to Him alone!
As for the possibility of me beginning to nurse Tyson, it looks like they want to err on the side of caution and continue with the portagin. Seeing as the fluid disappeared so quickly, they cannot say for sure if this was a result of the portagin or not. The nutritionalist would like to stay on the course we are on and continue with portagin, but the cardiologists upstairs may differ in their opinion. For now, we are continuing with portagin. The problem is this: if I start breastfeeding and the fluid does return, then we know for sure it is chylothorax. And then we have to begin portagin again and start counting 6 weeks from that date. If we stay on this course, at least we are a week ahead of the game and I can begin nursing in about 5 weeks time. This means that I would be beginning breastfeeding at home, and I would definitely be calling in the help of my trusted Robin Berger (lactation consultant who I have known since Braden was born 7 years ago) and I am sure she could help me find a way to get that little guy to nurse. I am not too concerned about nipple confusion, at least this way maybe one of my babies will actually take a bottle when I need them to! LOL
So that's the update for today. Hopefully I will have some more good news tomorrow!

Take care,

Mel:)

Day Eleven Post-Norwood - Monday, December 15, 2008

"Sing praises to God, sing praises;
sing praises to our King, sing praises.
For God is the King of all the earth;

sing to him a psalm of praise."
Psalm 47: 6,7

I am just FLYING today! Things are progressing so well that we may be headed for the much-anticipated fourth floor by as early as tomorrow!
This morning when I came in to see Tyson he was back in the headbox. The CPAP was really annoying him and he had quite a fussy night. He couldn't settle down into a deep sleep so they took him off CPAP and put him back in the headbox. He is doing well there and there doesn't seem to be any reason why he should need to go back on CPAP.
When I came in after my "lunch break" he had been taken out of the head box and he is doing just fine on his own. The doctors are very pleased with his respiratory progress considering where he was on Saturday.
His central line (in the neck) has been removed and they hope to remove his arterial line soon too. When he moves up to the fourth floor, the only lines he will have is his PICC line and his NG tube. YAY! He is really starting to look "normal" again!
I had a look at the x-rays of his lungs that they took early this morning and guess what?!?! The fluids are disappearing and his left lung is back to normal again! So excited for this step in his recovery. Looking forward to moving up to the fourth floor soon!
Also, once the fluids are totally gone and stay gone for a while, there is no reason why he should need to continue on the portagin so I will definitely be talking to the head Dr. again about putting him back on breastmilk. He is too skinny and they need to fatten him up some more.
They've also finally increased his feed again....for a baby who was being breastfed prior to surgery and getting the exact amounts he wanted, to going with small amounts of portagin, he was quite hungry. I kept telling the nurses that they need to increase his intake because he kept chomping down on his soother...but I guess they can't increase it too quickly especially with fluid in the lungs, for fear that he might asperate. So they are increasing the quantities a little quicker now, and soon should be back up to the minimal requirement of 2 oz. Personally I think he needs even more than that (based on what my other babies ate at this age) but we have to wait and see how his tummy tolerates that first. This afternoon he was given 45 mls (an ounce and a half) and he had that digested within no time!
I am so happy with his progress and can't wait for my kids to be able to see him! Once he is on the fourth floor, and in his own room, they can visit him anytime they want! Hoping for a really nice weekend with them if all goes well.
Thanks so much for everyone's prayers and support. They mean so much to all of us!
Till tomorrow,
Mel:)

Day Ten Post-Norwood - Sunday, December 14, 2008


"I will say
of the LORD,
"He is my refuge and my fortress,
my God, in whom I trust."
Psalm 91:2


HAPPY 35th ANNIVERSARY MOM AND DAD!

Yesterday we enjoyed a trip back to Orangeville to celebrate my parents' 35th wedding anniversary (which is officially today.) We had an enjoyable time and it was great to get together with the whole family again!
Although it was difficult to leave Tyson in the morning, it was just as difficult to leave Orangeville again at night. Our hearts are being torn in many directions. When we saw Tyson in the morning, he had just been suctioned, and he was very upset and working extremely hard to breathe. (As you know, he was extubated on Friday evening and has been working very hard to breathe ever since.) They told us in the morning that if he continued to work that hard, they might have to put him on CPAP. CPAP still allows Tyson to do all the breathing on his own but it gives him an extra "whoof" during each breath. It's kind of like sticking your head outside a bus while it's moving....!
Anyway, it was difficult to leave Tyson in the morning, especially considering how hard his chest was caving in and out as he took each breath. But as we neared Orangeville my feelings were very "up and down" as we got closer to my other children but farther and farther away from Tyson. Then as we said good-bye to the other three children at bedtime Saturday night, I cried again.....the emotions are so hard! I feel like I am riding a roller coaster all the time.....it was so hard to say good-bye to my other children but my heart still tugs at Tyson and being there for him too. I feel like I need to be two places at once, and that is why we are SO THANKFUL for my parents and the dedication they have to our other children during this difficult time. It is also good that Brian can be there for them during the week and I can focus my attention on being with Tyson. As much as I miss my other three, I know that they are in good hands and they all seem to be coping very well.
When we visited Tyson again on Saturday night, he was on CPAP because there had suffered a slight lung collapse in his left lung. (not even the lung we were concerned about in the first place!) He was breathing peacefully on CPAP and as long as he does well and his saturations stay constant, he will not likely need to be re-intubated. The nurse says that many children need to be on CPAP after being extubated and even 35% of children need to be re-intubated.

This morning Tyson was still breathing very comfortably. There doesn't seem to be talk about re-intubation (*phew*) because he is doing so well on CPAP (according to the nurse he is 100% better than last night.) (And yes, I got to hold him! That felt sooooo good!) This afternoon after church we saw him again and the nurse mentioned that he had a rough afternoon because he is very annoyed with the CPAP in his nose. The plan is to take off the CPAP sometime during the night and put him back in the head box to see if calms down. They also gave him a small dose of a sedative to calm him down. (Where did he get his temper from?)
Good news about the x-rays of his chest! The x-rays from Saturday morning showed a slight collapse in the upper probe of his left lung....but the x-rays from Sunday morning show an improvement in the amount of fluid in the lungs, and the left lung is re-inflating as a result of the CPAP. So it looks like the CPAP is doing its job and his lung should be repaired in no time. As long as Tyson can expel the extra fluids, he will continue to move forward. We pray that he can learn to breathe deeply so he can be off CPAP soon, and that he will continue to cough and expel the secretions in his chest and lungs.
As far as the concern about his right lung, it looks like those fluids have "magically" disappeared! His right lung now looks healthier than his left, and although there are still small amounts of fluid on either side, he seems to be doing well and the fluids are definitely decreasing. Tyson is also receiving regular physical therapy where they train the lung to loosen the fluids so he can cough more. It involves tapping, shaking and massaging the lungs to loosen things up. From the looks of Sunday morning's x-ray, these things appear to be improving the amount of fluid building up. Reasons to praise the Lord for good progress!


Tyson has also been taken off of morphine by IV but they have been giving him small amounts of morphine (or a form of morphine) directly into his NG tube (feeding tube - NG tube is nasogastric tube.) The blood pressure medication he had on IV has also been discontinued and is being given by NG tube too (called captopril). These are all steps to making it more possible for him to go to a Step Down room. The less IVs he has, the better.
We will keep posting.
Brian, Mel and Tyson
















Day Eight Post-Norwood - Extubation Day! Friday, December 12, 2008

"Be joyful always; pray continually;
give thanks in all circumstances,

for this is God's will for you

in Christ Jesus."

1 Thess. 5:16-18

Today I waited around all day for Tyson's extubation. (Well, kinda. I had some company throughout the day too. Gerald and Michelle came in the afternoon and then Derek and Lea came at dinner time.)
Tyson had to fast 4 hours before and 4 hours after the procedure so they stopped his feeds through the NG tube at about 3 am, expecting him to be extubated early on in the morning. Then they decided to give him a blood transfusion first so that his heart didn't have to work so hard after the extubation and he could concentrate on his breathing more. That takes two hours to complete. So he should have been ready to have the breathing tubes taken out by about 3pm but the Respiratory Therapist didn't come in till after 5:30 pm. Long story short, he was extubated just before 6 pm and put in a "head box" to get some moist air into his lungs so they don't dry out. This should be gone by morning and I will hopefully be able to hold my son!

That's all for now!
Mel:)







PEEK-A-BOO
Tyson in the headbox


(Please excuse the stupid placements of these pictures, this blog is really ticking me off! Every time I move something where I want it and then hit "save", it does it's own thing once I publish it!)

One Week Post-Norwood - Thursday, December 11, 2008

"Rejoice in the Lord always.
I will say it again: Rejoice!"
Phil. 4:4
Tyson spent a fair amount of time awake today. Sorry that you had to miss that, Brian! It was wonderful to see him focusing on my face and tracking me with his eyes whenever I moved my head. He was awake from about 9-10 am and again for a bit at lunch time, and then he was awake for over an hour between 4 pm - 5:30 pm. I also "got to" change his diaper again!

Tyson is off of all sedatives now and is moving around a bit (and trying to pull at his tubes!) They have gentle velcro "restraints" that we are using on his one hand, as he gets irritated by the ventilator tubes and accidentally pulls at them. Hopefully tomorrow this won't be the case anymore because THEY PLAN TO EXTUBATE HIM IN THE MORNING! I am so excited about this as I will FINALLY get to hold him again! The ventilator is on the lowest possible setting you can have on support mode, and his saturations (oxygen levels) are stable, so hopefully things will go well and he will be successful at breathing on his own again.

As for the fluid in the lungs, I spoke with Dr. VanArsdale, Tyson's surgeon, about what is going on with that. He is not too concerned about the fluid outside the lung, in the chest area, and says that it is a minuscule amount, which is why Tyson didn't end up having a CT scan today after all (or a chest tube either!) Good news!
This fluid outside the lungs also has nothing to do with why they have him on portagin (and now they also have him on a calcium supplement too since his calcium levels are low from not being fed breastmilk.) I keep hounding as to WHY he is on portagin if they don't know for sure that the fluid is lymphatic fluid (called chylothorax) because I want my son to be on breastmilk. If nobody knows for sure if the fluid is chylothorax, why is he off breastmilk? Also, to qualify for the EBM study on skimmed breastmilk that I talked about last night, the baby needs to be on a chest tube. Since Tyson does not need a chest tube, he cannot have the option of the low-fat breast milk.


The fluid Dr. VanArsdale is unsure about is the fluid inside the lungs....but this also has nothing to do with why he is on portagin. So I keep asking WHY is Tyson on portagin? Even here in a world-renowned hospital like Sick Kids, there are glitches and there is misinformation. I am going to keep hounding until I get a straight answer because I just don't understand why Tyson is not being given the nutrients and anti-bodies he needs from his mother's milk. The nurse that is in tonight (AD) says that they have to err on the side of caution, especially since they plan to extubate tomorrow. We don't want to have an infection in his chest and then they have to keep the ventilator in longer, which also increases the chance of infection around his tubing. The longer they keep tubes in, the greater the risk of infection. So for right now they are focusing on extubating, and will deal with the fluid issues when he is more stable with his breathing. We are hoping that the fluid in his lung is not wet chest which could cause future lung collapse, this would not be good at all. Praying for the best....
Like I said before, Tyson is off of all sedatives, which is why he is awake more often now. He is still on heparine (an anti-coagulant to prevent blood clotting) and small amounts of morphine and a few others that I am not sure what they are or what they do. (Sorry, I can't remember everything!)

Tyson also has tolerated his feeds better. They have increased his intake to 22 ml, which he is digesting well. The goal is to get him up to 2 oz where he should be for his age.

I had Marg (G) and Jenn VdS come down for a visit today. Then later Ed and Gwen came in after visiting with Ed's Dad. In the evening, Rob and Anne came over as well as Robert. It is so nice to have company, especially with Brian back in Orangeville. However, I am now going to have to start writing things down in my notebook because I totally forgot about Rob and Anne coming! I was on my way down the stairs to meet Robert at 7:30 and Anne just happened to be sitting there.....apparently we had made arrangements with them to meet at 7 pm but I must have totally forgotten! Good thing I was at least counting on Robert's visit, or else Rob and Anne might not have found me! (If this ever happens in the future, go to the CCCU on the second floor and have reception buzz Tyson's room to look for me. If I'm not there, I am on the computer on the fourth floor - in the Cardiac Diagnostic Unit! LOL)

If anyone wants to get a hold of me please call Brian or Karen VS for my hotel numbers.

So that's my update for today. In your prayers tonight and tomorrow, please pray that Tyson's extubation goes well and that he can breathe strongly on his own, and that his lungs stay clear. I am a little worried about a lung collapsing but realize God is still in control of those things too!

Mel:)





Day Six Post-Norwood - Wednesday, December 10, 2008

"Be joyful in hope,
patient in affliction,
faithful in prayer."
Romans 12:12
Tyson was unfortunately still not extubated today. There have been concerns about the fluid in and around his right lung. The fluid around his lungs is very minimal and of no real concern since it usually drains itself once he is off ventilation. But even the surgeon is baffled by what is causing the fluid in the lung, because if it was an infection of some sort, it would be in both lungs.
We had learned early this morning that Tyson would have to have a chest tube put back in (one of the tubes that was taken out on Monday morning - this would be kind of taking a step backward instead of forward...) but then later this morning they changed their mind and said that the chest tube wouldn't be needed.
When I visited Tyson this afternoon, the nurse said yes, they would be taking him to IGT (Image Guided Therapy) tomorrow to have the chest tube re-inserted so that the fluid could drain. So nobody really knows for sure what is happening. I am supposed to be meeting with one of the doctors later this evening to figure out for sure what is going on.
The problem is a bit of a vicious circle. If Tyson was off ventilation, he could excrete the fluid better himself by coughing it up, etc. But they don't want to exubate him until they know what the fluid is. So it seems kinda like nobody really knows how to move forward until Tyson figures out what he is going to do about it. The ventilator is still turned off, while being on CPAP support mode (Tyson initiates all breathing on his own while the machine just supports him.) When they tried to turn his PEEPS down this morning, (please don't ask me to explain that one) he wasn't ready for that yet, so they had to keep him on support mode. Basically it looks like it's going to be a waiting game until Tyson can either cough up that fluid or figure out how to breath completely unsupported. So we have to patient. I know that Tyson will figure it out when he is good and ready. Once he is off ventilation, I can hold him again. But I have to be patient.
The doctors lean towards the fluid being lymphatic fluid, caused by a small nick in one of Tyson's lymph nodes. It is possible that during the surgery one of his lymph nodes were nicked and they are now leaking into his lung. If this is the case, it wouldn't mean long-term effects for Tyson since it would most likely heal itself in 6-8 weeks. BUT.... it would mean some more emotional effects on ME, because Tyson would not be allowed to have any breastmilk until after that time, since the fat in breast milk can affect the healing of the lymph node. This is a bit upsetting for me right now, but I am going to have to learn to be patient! Pumping is still going ok but of course, it's more effective and certainly more rewarding to actually be nursing a baby, not a pump! It is hard for me since there is nothing I can do for my son at this time except possibly provide some nutrients and nourishment but I can't even do that right now! And it's hard having him still on ventilation and possibly another chest tube, because that means I still can't hold him! It's hard....I have to be patient....but I had opportunity to squeeze my older two boys extra hard today!
We had a great visit with our boys again. They were thrilled not to have to go to school today since they got to meet the Toronto Maple Leafs!!!!! There are some pics below of some of the players, Kaberle and Kubina for sure and I have no idea who the other one was.....Brian told me but I forget who it is.
The whole team was there today visiting each floor...and they happened to be there at Marnie's Lounge while my kids were playing air hockey with Grandma and Grandpa Kottelenberg! We got some nice pictures and the boys got a Maple Leaf bag full of Maple Leaf goodies: pencil, erasers, funky hats, flags, puzzles, autographed photos, etc...full of goodies! The boys didn't get to have pictures taken with the players though, because they were busy with the patients from the hospital and Brian was not about to barge in and disturb them just to get pics with our kids. LOL
Brian thought it was pretty cool too! Once while they were in the elevator, Brian's Dad nudged him and said, "You better behave now!" And Brian turned around to see Ron Wilson smiling away at him! Oh what a fun and busy day!

Speaking of busy, Brian and I were also busy moving our things from the hospital parent room to the Days Inn on Yonge and Carlton. I got a phone call from Ronald McDonald House today who said that our name has been moved to the top of their waiting list and in the meantime, we can enjoy a complimentary stay at the Days Inn Hotel for as long as Tyson is in Critical Care. So since we are most likely going to be bumped from the parent room soon enough (to give priority to other parents who might need it more), we decided to jump on the offer and move out. So Brian helped me move everything over this afternoon while our kids were oogling over the Maple Leafs (although I am sure Brian would rather have been there!) The room includes two double beds and a tv, so if we wanted to have our kids stay over night with us sometime, we have that option. It means I will be walking to the hospital in the morning and back again at nights, but I like the idea of having a bed to sleep in (as opposed to a pull-out couch) and my own bathroom and shower, my own fridge, and I will have a tv to watch for those nights that I might have trouble sleeping. There's also a pool and hot tub, etc there so if we had the kids over one weekend they could enjoy that as well. We are hoping not to be here too much longer and then be in a room on the 4th floor with Tyson, at which time we would have a bed, tv, bathroom, etc. But again, we have to be PATIENT!
So that is what is up for today. Brian went back to Orangeville today with the boys and will hopefully be back to see me again on Friday night. Saturday is my parents 35th wedding anniversary celebration and we hope to go back to Orangeville for that too. I have made arrangements to rent a pump and will also take it back to the Days Inn with me, since i think they charge a flat rate after a certain length of time using it. And seeing as I might not be nursing Tyson yet even after we go home (depending on if they can figure out what the fluid is or not...) then it will come in handy at home too.

I was talking with Keith today (remember the Christian couple we met whose son had the same surgery as Tyson 6 months ago) and he says there is a way they can still feed Tyson breastmilk called an EBM study. It basically involves skimming all the fat from the breastmilk and giving it to them that way, then they still get the nutrients and antibodies from their mother. This protagin stuff they give instead does not really put fat on their bodies like breastmilk can. So I will talk to the head dietitian Sara Farmer sometime tomorrow about that. Another waiting game.....

That's all for now,
Mel:)

Day Five Post-Norwood - Tuesday, December 9, 2008

"I lift up my eyes to the hills
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth. "
Psalm 121:1,2
There hasn't been a whole lot of progress today. But thanks be to God, that Tyson hasn't taken any backward steps either! As of this morning, we were thrilled because they had turned the ventilator off and had it in "support mode" which only gave him breaths whenever he needed them. But he was doing most of the breathing on his own so they had hoped to be able to extubate him later today (take the breathing tubes completely out.) But because of some fluid behind his right lung, they had to do an MRI this afternoon to check out his lungs and heart first before removing anything. So they have held off on extubating him, took the MRI this afternoon, and we will get results later. Because of his MRI, Tyson was quite sedated again today so he wasn't awake a whole lot. Although he did open his eyes and look curiously at Daddy later this afternoon.
As soon as we get those breathing tubes out of his nose, we will take more pictures and will post them up here, we promise! He is looking better, his skin is a healthy colour but, boy oh boy, does he look long and thin! We are definitely not used to seeing our two-week old babies without a double-chin or chunky thighs, that's for sure. He is keeping down the breastmilk okay again and they hope to increase his intake again soon.
That's really all that has happened today. Hopefully tomorrow we have more to report. Brian's parents are bringing up our boys to visit for the day (yes, Braden will be playing hooky!) Then Brian is going home with them later in the afternoon and I will be braving the hospital all by myself.
We are doing the blog "early" tonight because we need to rest up our weary bodies to have energy for our bouncing boys tomorrow! LOL
Take care,
Brian, Mel and Tyson