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!

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:)





4 comments:

Sara said...

So glad you were able to have some special family time with Christmas and Tyson's baptism before having to go back to the hospital. Aveeno has a great mosturizing hand cream so your hands don't get too dry from all that washing. You remain in our prayers!

Anonymous said...

Glad to hear you caught the infection early. We pray you may go back home soon. I totally understand your decision to keep as many germs fron Tyson as possible. He has enough to deal with,even when he is as healthy as he can be. Wishing you patience as you wait at Sick Kid's again.
Betty Bouwers

John said...

Brian and Melissa

We have received regular updates from my mom (Tante Hanna)as well as the updates from blog.

May God continue to grant you patience as you await Tyson's full time return home. We pray for stability and recovery of Tyson's health.

May He continue to be your source of strength. Your witness through this difficult start of Tyson's life is an encouragement to us all. Thank you for sharing. To Him be the Glory!

John and Toni - Grimsby

Anonymous said...

We pray that Tyson will be able to go home soon again!! Remember he's in the best place right now (even though you would love to be home!) and not very surprising that he has an infection - he's so little and been through so much! Amazing though how strong he is - glad to hear he's eating well. And as for the handwashing that should be second nature to all of us:) Hey i'd be tempted to keep him (and all our kids) in a bubble until they're ready to leave home LOL but we need to trust that our Father knows best! Thanks for the updates and may you be comforted knowing that you are all in our prayers.
God Bless
Gerry & Margaret
Logan, Jasmine, Curtis