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!

Back at Sick Kids - Tuesday, April 7, 2009

Last night we went to Orangeville Hospital with Tyson. On Sunday we noticed that he had developed a slight sniffle, but we were keeping a close eye on it, especially in light of his upcoming surgery for next Thursday. Monday he was coughing quite a bit so we still just kept a close eye on things. On Monday afternoon he was extremely cranky and crying in pain a lot, not sleeping well, not feeding well, etc..... which we thought was a result of his RSV vaccine he had that morning. By Monday night at around 7 pm we noticed bigger than normal indrawing of the chest (when you can see the chest caving in as a result of working very hard to breathe.) , and by 11:00 pm that night it had developed into pretty severe indrawing of the chest.

We arrived at Orangeville hospital at about 12:30 Tuesday am. The doctors immediately consulted with Dr. Murphy who said to have him transferred to Sick Kids. An anaesthetist came in and intubated him (so he is breathing by ventilator) because his O2 Sats were in the high 50's, low 60's. Way lower than they should be. He was working way too hard to breathe, it was very painful to watch our son fight so hard to breathe. Even worse than before his first surgery. The look of utter fear in his eyes as we tried to calm him down is just beyond words. Heart-wrenching. They also put a feeding tube in so he is receiving milk by Ng tube. The ER doctor was adamant about transferring his care because they just can't provide services for a baby with such complex anomalies. It was also difficult to watch the doctors and nurses panic there as they didn't really know what to do with him. But we know that Tyson is in God's hand and we are thankful for the care that we received there. The anaesthetist was great with him and knew exactly what he was doing. He immediately put him on morphine and paralyzers to relax him. His heart just can't take that hard work.

We were transported to Sick Kids hospital by special Critical Care Emergency Medical Services, who specialize in critical cases like Tyson's. We arrived at Sick Kids by about 6 am and he was immediately placed in the Critical Care Unit. He is in isolation and no one can go in to see him except Brian and I and the health care professionals. He is still on the ventilator and Ng tube and will remain on them until he can breathe well on his own again. They have taken blood cultures to figure out what it is that he is fighting. It takes 48 hours for results. If it is viral, there is nothing to do but wait it out in the hospital, after which time they will perform his next surgery once healthy again. If it is bacterial, they will put him on antibiotics for one week and then once he is better they will do surgery.

As of this morning, he has suffered a slight collapse of the right lung but is receiving physical therapy for this already and is breathing peacefully by machine. He is slowly being taken off paralyzers and sedatives. He was waking up a bit this morning and already trying to tug at wires. They have put him in gentle restraints so he doesn't pull anything out.

Right now Brian and I are in Shelburne packing things up for ourselves and our children. We didn't get to say good-bye to them and they were a little confused to wake up with Grandma at home instead of Mom and Dad. (Thanks Mom, and thanks Marg for coming in the middle of the night!) We most likely will be staying until after Tyson recuperates from his next surgery, unless he makes an amazing recovery from whatever infection he is fighting and can come home in between (but would we really want him to is another question!)

Please keep Tyson in your prayers this week. We are confident that God knows the plans He has for Tyson, plans to prosper him and not to harm him, plans to give him hope and a future.

Brian and Mel

3 comments:

Ed and Gwen Kampen said...

We will lift you all in prayer. God has been so gracious in the past and we pray that He will bless Tyson with a quick recovery and provide you all with much needed strength while you endure this next trial. His mercies are new every morning...
Much love,
Ed and Gwen

Sara said...

We are on our knees in prayer for you! Hang in there and remember that you are completely surrounded with love and support!

willowsprite said...

Wishing you strength for this new trial and praying that Tyson will recover quickly.
Love,
Sherri, Stu and Callum.