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!

Cold & Flu Season Has Begun....

It's here, folks. The time of year I dread the most. Cold and flu season. As much as we try to stay cooped up in the house to avoid all the bugs flying around, it's very difficult to avoid everything completely because Tyson and I often have to be out for appointments, and our other kids go to school and bring home all sorts of nasty things. It's inevitable. Tyson will get sick. The question is: can he fight it this year? Will he spend much of the upcoming winter in the hospital, or on antibiotics, or can his immune system handle the slightest cold this year?

Tyson came down with his first cold a week ago. He was the first in the family to catch it so we're not sure where it came from! We let his symptoms go for a few days because his 02 sats were still low 80s (Sick Kids doesn't want them lower than 80 or Tyson will have to be on oxygen.) We immediately began the ventolin mask every 4 hours as soon as the cold symptoms began, but by Thursday he was coughing pretty badly and didn't sleep well the night before so I had to take him in to see his Dr. Dr said he had a slight pneumonia in the upper lobe of his right lung, so prescribed him an antibiotic to help him heal, despite Tyson's energetic and bouncy behaviour at the Dr's office. He sure didn't look sick when we brought him in, but we know how quickly that can change with him. Anyway, we debated on whether or not we should actually fill out the prescription because he seemed to be on the mend. And I hate the idea of having Ty on drugs all winter long. But then Braden came home from school with a sore throat and barky cough, so we continued the antibiotics for Tyson to be proactive and hopefully keep Braden's cold away from Tyson. So far all of us in the family have had the sore throat cold that Braden started with last week, so we are glad that Tyson can be protected from it. However, he is still coughing and I'm not convinced that the antibiotics are actually treating his pneumonia. It is hard to tell if the pneumonia is viral or bacterial unless they swab him. If it's viral (which I think it is since he's been on antibiotics for 5 days now with no huge improvement) then the antibiotics really do nothing. Except keep this other cold away from him. We will continue to keep an eye on him and if the coughing doesn't stop by the time he's through with the 10 days of antibiotics, we'll have him seen again. His sats are still hovering in the low 80s, occasionally dipping to 78-79 at night when he's sleeping. Tyson is pretty good at letting us know when he's not doing well, so we are constantly assessing his behaviour for signs of distress.

We decided this past March when Tyson was hospitalized into Cardiac Critical Care Unit at Sick Kids with Influenza A and pneumonia, that he would absolutely be getting the flu shot this year. Anyone who knows us, knows we have never been big on the flu shot. But I would rather have Tyson covered for this season's most common colds and flus than spend another 2 weeks at Sick Kids because we didn't take the necessary precautions. Tyson will also be getting the RSV prophylaxis shots once every month this season too. RSV is a serious respiratory tract infection that affects the lungs and can be fatal in children with severe cardiac and pulmonary issues like Tyson. He received these shots during his first two winters, from November to April. Ontario Disability Support Program (ODSP) covers the RSV shots for anyone with chronic lung or heart disease, premature babies, and infants with auto-immune deficiencies. Because Tyson turned 2 last November, I assumed he was no longer covered so we did not ask about the shots and prayed he didn't catch RSV. However, both his respirologist and cardiologist (as well as family doctor and pediatrician of course) feel it's imperative that Tyson receive these shots again because of his pulmonary vein stenosis. His cardiologist is writing a special request to ODSP to make sure the shots are covered (they are $900 for each monthly shot!) We are thankful for that. Please continue to pray with us that Tyson has a healthy winter and that he can be kept away from any serious respiratory illnesses. We love Sick Kids but really don't want to spend the winter there!

Other than the cold this week, Tyson is doing very well. He is talking more and more each day, especially on the days that he is home alone with me and all his siblings are in school. He will be starting weekly speech therapy sessions this fall, we're just waiting for the call from Headwaters to find out when he starts. I don't think he'll be in therapy long since he's not doing that badly. He sure has come a long way! Tyson continues to make us laugh and cry. When he's happy, the world sure knows about it; and the same goes for when he's upset. His personality reminds us a lot of Merrick when he was this age, just goofy and silly and active, and really into sports. He also enjoys reading books. Lots of them. I get so tired of reading the same books all the time! Last winter I took him to Story Time at the library so I could take out some different books, but I am so paranoid about taking him anywhere for fear of what he could pick up while we're out. The smallest little sniffle or cough to a healthy child could mean terrible things for Tyson. We're out often enough these days keeping up with all his appointments and he's at a babysitter often enough while I have my appointments for this baby.

Before his cold, Tyson's 02 sats were definitely improving from this past spring and summer. In June when he had his heart cath, they were low 80s at best. That is why they had originally scheduled another cath in September, to try close the fenestration so his sats could hopefully increase. However, since about August or so and he's been on the nebulizer mask 2X per day, his 02 sats have improved to the high 80s, low 90s. We've seen a 92 even! During his pre-cath appointment his sats were 90, which is probably the main reason they postponed his cath. Why fix what isn't broke?

Tyson's new heart cath date is December 5th. Hopefully that gives enough time for some of the pressures in his heart and lungs to decrease so they can go ahead with fenestration closure. If not, I'm sure the surgical team will come up with a wonderful plan for Tyson. It may involve transplant. Brian and I have been discussing the idea of asking that they place Tyson's name on the transplant list now while he is still clinically well; even if his name goes on the very bottom of the list. Why wait till he is unwell and his heart or lung is failing before deciding he needs to be on the list? I know things go by priorities, but we'd rather not watch our child get very sick and wait months in the hospital for a transplant. Many infants/children die while waiting for their gift of a new heart. So after his cath, if things get to that point, we will have a long talk with Tyson's cardiologist.

Please continue to keep Tyson in your prayers. Pray that he may be spared from any serious illnesses this winter, that his heart and lungs will continue to function well and that the path down the transplant road can be as long as possible. Also while you're praying for him, put in a word or two for our family too. That we can all remain healthy too, that our unborn baby can continue to grow healthy and strong, that God will prepare us for whatever He has in store for us all this winter, that we can experience God's peace knowing that all things come not by chance but by His Fatherly hand.
Thanks,
Mel:)





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