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!

Tyson's New Surgery Date

Hello to everyone once again. I hope everyone enjoyed the beautiful sunshine this week!

On Thursday we went back to Sick Kids for a check-up and Tyson's pneumonia has cleared up quite nicely. You'd barely know he had anything last week, as everything seems to be cleared up and his chest and lungs sound completely clear. He remains on the antibiotics for another few days to make sure the bug is killed.
He did, however, lose a bit of weight from his discharge day until now. I am a little concerned about this but do realize that, like any of us, it does take time to regain a full appetite. I am borrowing a baby weigh scale again from Community Care Access Centre to keep a close eye on things. Hopefully he can gain some of the weight back that he lost as he needs to keep strong for his next surgery.

We have another date for surgery. It's Tuesday, May 12, 2009. Hopefully things don't get changed again; we sure have had enough waiting! Tyson's echocardiogram last week showed that from a heart perspective, he is doing fine and the surgery can wait till May. From a respiratory perspective, the doctors would like Tyson's lungs to be 100% healed before going in to the surgery. If he goes into surgery 100% healthy, he will have a shorter recovery time than if they operated on him while still a little sick.
The expected recovery time for the Glenn surgery is 5-7 days. This is just a general guideline, based on how other healthy babies have recovered. We never know what to expect, of course, but as long as Tyson progresses and heals as he did the first time, one week or so is a realistic timeline.

Thanks for keeping us in your prayers. We pray that Tyson will remain healthy until this surgery date and that all will go according to God's will.
Brian and Mel:)

Home Again! Monday, April 13, 2009

Yes, we are home! We got home back to Orangeville at about 3:00 pm on Monday afternoon. We stayed at Mom and Dad's for dinner before going home with all four of our little tykes.
Tyson is doing much better. He is still coughing a fair bit and his chest still sounds a little rattly but the antibiotics should clear things up nicely.
I am glad to say that Tyson didn't take long to figure out how to sleep in his own bed again. He went to sleep at 9:30 pm and wasn't up until 8 am this morning. So happy that he is back to his normal sleeping pattern. So far so good!
We go back to Sick Kid this week Thursday for a check-up to make sure things are staying in the right direction.
Thanks everyone for your prayers and words of encouragement. They mean so much to us and we are reminded again of how precious life is. We also entrust Tyson into God's Fatherly Hand.
Brian and Mel
Braden, Merrick, Kenya and Tyson

Going Home Soon - Easter Sunday 2009


"Thank the Lord and come with praise
Songs of jubilation raise!"

Keeping this one really short (honest!)
Tyson is doing great. He came off O2 today and both the Ng and the central line in his neck came out too. Now he only has a sats monitor on his foot (which we can take off anytime to go for a walk!)
Nurse Practitioner says we most likely can go home Monday. If not, for sure by Tuesday.
Yay!
Bye!
Mel:)
(Bet you didn't think I could keep it short, eh?)

Nursing Again - Saturday, April 11, 2009

Tyson has had a good day. Last night he was pretty grumpy and didn't settle to sleep until 1:30 am but once the Tylenol kicked in, he was ok. This morning he didn't nap well since he kept on being interrupted by this nurse or that therapist. But when the boys came in to say hi, Tyson had great big smiles for them. This afternoon he was back to himself again, and we even got a few laughs out of him.
Mom and Dad Spanninga came to visit this afternoon. We spent some time at Marnie's Lounge playing games on the Wii. What a riot. Later they left and took Braden, Merrick, and Kenya home with them. The boys get to enjoy Uncle Derek and Uncle Jason's hockey game tonight with their Grandpa.
I also got to start nursing again. It is going well. Tyson only slept a half an hour this afternoon and is still awake right now. Brian is spending some quality hockey time with him so that I could take a break. I took a walk outside in the fresh air, boy is it nice out there!
Some more lines were removed today. The IV in his other hand is out, so now both his hands are free for him to inspect curiously, and chew on again. He also had the ecg leads removed. As long as the feeding continues to go well and he can take his meds orally, we can remove the Ng tube tonight! Yay! He is slowly being weaned from the O2. He's down from 2 litres this morning to 0.25 litres. It will for sure be gone by tomorrow. Then all he has left is his O2 sats monitor on his foot. All the wires will be gone from his hands and face.
So now we are waiting for Tyson to clear up his lungs, which is getting better and better. His cough is getting stronger every day. It looks like we should be outta here in a couple of days. Then it is a matter of Tyson becoming 100% again before his surgery can be booked. He will be on follow-up care 7-10 days after he is discharged from here and we will go from there.
I hope everyone has a blessed Lord's Day tomorrow!
Mel:)

Moved up to 4D - Good Friday 2009

"But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed." Isaiah 53:5


What a Good Friday it is! Today we can remember God's gift of grace to us in sending His Son to pay for all our sins. It's days like today when I miss church that I realize how much we sometimes take for granted that it is indeed a privilege to go to God's house to worship Him.

When I called in to Tyson's room this morning to see him, I was informed that he was moved from his isolation room to room 53 in ICU. I sat with him for a while, then later crawled back in bed because I realized it was only 6:10am. When I called in later to see him again at around 8:30, he had moved again, but this time to a Step Down room on the fourth floor! He only spent a few hours in Step Down and then was moved into his own room on 4D, room 22. YAY!

Tyson is now off IV, and we are slowly increasing his Ng feed to just over 90 mls (3 oz.) The doctors want to start slowly again because his lungs are still really wet sounding, and we don't want to overdue his fluid intake. I asked the Nurse Practitioner Paula today about possibly starting breast feeding again today, but she wants to wait at least till tomorrow. So hopefully we can start that tomorrow and get that Ng tube pulled too.

Some of his lines are gone, one IV line clogged today so they pulled that out. Right now he still has a central line in his neck, an IV line in his hand, an Ng tube, oxygen prongs in his nose, and of course the sats monitor to monitor his O2 saturations and the ecg leads to monitor his heart rate. This afternoon he really struggled to keep his sats up, even on 2 litres of oxygen. The nurse was spending a fair amount of time running back and forth to our room, and was thinking about moving him back to Step Down where he could get more attention. But then she snipped the ends of the prongs that go in his nose and found they were a little kinked. Now his sats are really good again and he has been down to 0.5 litres of oxygen.

NP Paula told me that the lab from Headwaters called and they have found a Group B (or C) strep pneumonia. Tyson is now on IV antibiotics to treat the pneumonia. Once he is ready to go home, they will switch to oral antibiotics.

Before we can go home, Tyson needs to be breathing well on his own, need no more suctioning, be feeding well and his lungs must be clear. So those are the things we are waiting for.

Mel:)

Extubated! Thursday, April 9, 2009

"I will praise God's name in song and glorify him with thanksgiving." Psalm 69: 30
This morning Tyson was weaned from all the morphine and all sedatives, in preparation for an anticipated extubation sometime today. He also has been MPO all day (no food allowed) since 5 am. As a result, he was awake for a good portion of the day, but severely agitated by the ventilator and getting pretty hungry. He has been on IV to keep him hydrated enough, but that isn't the same thing as s full tummy! He was finally extubated at 4 pm and has responded well to breathing on his own. The nurse just started an Ng feed at 8 pm, going up to 2 oz now. It's still not as much as he was receiving from me before he was admitted, but it's better than nothing. They will give him more at 11 pm, and then every three hours thereafter.
We received some disappointing news today about his surgery. It is most likely going to be postponed until further notice. So, although we are happy to be coming home once he is well, we are a little worried about trying to keep him healthy until his surgery. One doctor said it will be postponed for a few weeks, another person said 6 weeks......but these plans are also subject to change, if Ty's surgeon or cardiologist disagree and decide to go ahead with surgery earlier. But as long as his heart is still healthy, it's not an emergency situation. The member from the surgical team who informed us of this this morning said it is better for Ty to enter surgery really strong as opposed to just recuperating from a virus.
All the blood cultures have come back negative, meaning no bacteria infection, and no bronchialitis, but it was definitely some sort of virus. So he has been taken off antibiotics (since they don't treat a virus but only bacterial infections), and he is no longer considered to be in isolation (although he hasn't changed rooms.) We are going to have to wait it out until the virus is gone. We are thinking a few more days in ICU and then a few days on 4D...then home....only to come back again in another little while for surgery. *sigh*
Tyson has had a fair amount of suctioning yesterday and today. Apparently we caught the virus early enough, before the mucous really started building. But it must have been one big bad virus to have collapsed his lung so early on! Good thing that we are in tune with Tyson and what is normal and abnormal for him or it could have been much more serious. We know that God is looking after him and we pray daily for strength from Him to be able to care for Tyson in the special way that he needs. Through this ordeal we have learned that Tyson really is different from other babies. Even though he appears to be normal and healthy-looking, things are much more serious for him if he gets sick. This reaffirms our decision to keep him out of places like church nurseries where he would be exposed to a large number of germs. It's funny how we thought he was so strong, and that the little "sniffle" he developed on Sunday was no big deal and he would get over it. But wow did it ever take a toll on him! Praise God that all things are going well and he appears to be on the mend.
Brian went back home this afternoon to enjoy our kids' Easter concert and a Good Friday service in Orangeville. I, on the other hand, am cooped up in a hospital and the only churches within walking distance from the hospital are "not my type." LOL Brian plans to come back here with the kids on Friday afternoon and we will spend Friday and Saturday together. The kids won't be able to see Tyson but at least they can see their Mom again and have some fun at Marnie's Lounge and maybe a swim at the hotel pool.
That's all for now. Wishing you all a joyous Easter weekend, thanking and praising God for His gift of grace to us in sending His only Son to endure our sins on the cross. In Christ alone our hope is found.
Mel:)

Wednesday, April 8, 2009

"From heaven the LORD looks down and sees all mankind;
from his dwelling place he watches all who live on earth-
he who forms the hearts of all, who considers everything they do. "
Psalm 33: 13-15
This morning when Tyson was rolled over to get an x-ray done at 5:30 am, the nurse heard his voice...since the ventilator tube goes down past the vocal cords, you shouldn't be able to hear his voice at all. Not even when he cries, coughs or sneezes. It turns out that his ventilator actually came out. The nurses don't think it was pulled out by Tyson, but that perhaps he coughed or sneezed it out. The doctor decided to try and keep him off the ventilator to see what he would do. But he wasn't ready, since his chest was indrawing again and he was having to work way too hard to breathe. So he had to have more paralyzers in order for them to re-insert the tube.


He also was very cranky and fiesty when the Respiratory Therapist came in to do lung compressions (to expel the secretions in his lungs.) So they gave him Ativan before the RT came in for his afternoon therapy, to relieve some discomfort. They are continuing with therapy 3 times a day until his lungs can re-inflate. The chest x-ray done this morning didn't show much change in his lungs from yesterday. Hopefully the lungs can re-inflate soon, and then he can come off the ventilator. Right now they are weaning him off of the ventilator because the longer he stays on, the greater risk of infection.

We have no results from the blood cultures yet, since it takes 48 hours for bacteria to grow, but as of right now Tyson is being treated for bronchialitis. Often babies with bronchialitis will react negatively when the lungs are being compressed during therapy, which is what Tyson did this morning. The RT thinks it is most likely bronchialitis, and Tyson is also having increasing amounts of secretions in his lungs. So right now he is on anti-biotics to treat it. Once we get the results from the blood cultures tomorrow sometime, we will know more and the doctors will have a concrete plan as to what to do for him. It's a waiting game until then.
Tyson is also on Lasix again, which is a diuretic drug to help him pee. He has retained a lot of fluids and the Lasix helps him flush the fluids out. He was still quite puffy this morning but this afternoon he looked a lot better.
Tyson is still very sleepy since they are giving him sedatives so that he can tolerate the physio therapy on his lungs. He was awake for a little while this morning and looked around at us. We know he can hear us but he didn't respond to us with any smiles (but lots of frowning and raised eye-brows!) We brought his fish aquarium toy that he kept in his crib at home so that he has some familiar music to listen to if he is awake and we are not there.
This afternoon he was pretty agitated with his arms being in restraints. They are just velcro cuffs around his wrists with long ribbons that are tied loosely to the crib spindles. They give him some room to move around but not enough freedom that he can pull tubes out. He is pretty upset about the ventilator up his nose and he is trying to get his head to his hand and his hands to his head to pull it out. Hopefully he won't need the ventilator much longer and he will be less annoyed.
The sad reality is that he is going through all this all BEFORE his surgery. We hate seeing him like this when he hasn't even gone through surgery yet, but hopefully after surgery his lungs will be healthy enough that he won't be intubated for too long.
All in all he had a good day today. Since they weaned him off the ventilator settings a fair amount today and he has made good headway with that, they probably will give him a bit more of a break overnight and let him stabilize before weaning the numbers down more. Tomorrow is a new day and we will update you again then.
Brian and Mel:)








Evening Update - Tuesday, April 7, 2009

Tyson suffered a lung collapse earlier this morning and it was healing well. However, this afternoon the lower left side began collapsing as well and so now they are rotating him from lying on one side to the other. The lungs seem to be re-inflating well enough but they are not sure what is causing the problem. When they deep-suction him, they expected to see a lot more secretions than they did, considering we mentioned he had come down with a cold. However, they don't seem to have to suction him very often and so they aren't sure that this was the cause of the collapse. This afternoon he also had three episodes of de-sat'ing (the kind where we would see all the doctors and nurses running into the room - the kind that Brian and I have never had to witness happening in our room but were wide-eyed when it happened to others!) Tyson just unexplainably dropped in O2 sats, but no one knows why. It wasn't even as though they had just upset him by suctioning him or repositioning him. Quite often something like that can upset a baby and his oxygen levels would drop just from being upset, or the blood pressure or heart rate would go up. But the nurse said he was just lying there peacefully one second and the next second his sats dropped to the low 40's.
Well we must be patient as we await answers to his blood cultures, which should tell us what kind of infection (if any) he is fighting.
Currently Tyson is comfortable. He is on half the amount of morphine as he was last night, the sedatives have worn off and he is not on any paralyzers anymore either. He did spend some time awake and alert this afternoon (when we weren't there) and the nurse said he just looked around peacefully. He hasn't started Ng tube feeding as of yet because they feel he isn't quite ready for that yet. When they do start, it will be my pumped milk (yes, I am pumping again, fun fun...) He is a little puffy because they think he wasn't getting quite enough fluids overnight and was a little dehydrated as a result. They are trying to adjust the amount of intake based on how he handles things.
We are heading to bed early tonight as we have been up since 6 am Monday morning. Thankfully, we have a parent room in the hospital for the night. The appropriate protocol is to hand in the key in the morning and not to expect the room to be available again necessarily, but we will see if we can "renew" the room. We also have a Social Worker looking into a hotel room for us.
That is all for now. Thanks for your prayers.
Good night.
Brian and Mel:)

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

New Surgery Date

Tyson's Glenn surgery got bumped from Thursday, April 9, 2009 to Thursday, April 16, 2009. As difficult as it can be to have the date changed on short notice, we are thankful for this change. Braden and Merrick's Easter Concert is on April 9 and the Easter long weekend follows so we would not have been able to attend their concert (and we already missed their Christmas assembly and many family get-togethers because of Tyson's Norwood surgery.) As much as the boys said they were ok with us having to miss their Easter concert, you should have seen their faces when we told them that Tyson's surgery was re-scheduled and we could now make it! They were thrilled!

Tyson is continuing to grow well. He is now over 15 pounds and sleeping quite well at nights He usually will sleep a 9-10 hour stretch for me! Can't complain about that! I don't want to speak too soon but it's now been over a week since I have gotten up earlier than 5 am...... !!!

Please keep Tyson in your prayers in the coming weeks, that he may stay healthy in preparation for the surgery, and that God will carry us all through as He did in December. We are being reminded daily of God's goodness and grace!

Till next time,
Mel:)