Our pink miracle …
Luke has been home now a week and a half and we are very happy with his progress. At first when he came home he had a variety of medicines and was taking tylenol for pain. The most of these are gone now. Luke does have pain sometimes, especially when he coughs or makes sudden movements. We notice though that he is very careful with is body. He doesn't bend often, but rather goes down on his knees. He walkes a little hunched over and seems to protect his chest sometimes. It will take about 12 weeks for his chest to heal completely. For the time being, we are careful not to lift him under his arms.

Luke is on bloodthinners, but drawing blood proved to be a big problem. Apparently he has difficult veins because they run fin a different direction than most, and they are very deep. (That's partly because our little man is a chunky one!) Regardless, when a local lab, a local hospital and then the 'best poker' in Toronto had problems, we decided that he could not give blood weekly like this. Luckily there is a machine available to buy which measures blood coagulations by pricking the tip of your finger and putting it on a strip, much like a diabetic machine. We were able to buy one of these in Toronto last thursday. Now we can take his blood at home, ourselves, call in the values, and his bloodthinner doses can be managed that way.

It's a time of adjustment for us now. Jack has to get used to being at home again too, after being at Oma's house. Their Oma from Holland and two uncles are houseguests now too so there is lots to see and do.

Hugo and I have already spent hours staring at our beautiful pink child. It is strangest feeling in the world to reluctantly give our little boy over to the doctors and think that he would have such a long, difficult road ahead of him. Rather, in a short time, we got this beautiful pink boy back again. Look at the picture, even his features have changed from the new circulation! Obviously we have only the Lord to thank for this great, wonderful miracle of ours.

Our pink miracle …
Luke has been home now a week and a half and we are very happy with his progress. At first when he came home he had a variety of medicines and was taking tylenol for pain. The most of these are gone now. Luke does have pain sometimes, especially when he coughs or makes sudden movements. We notice though that he is very careful with is body. He doesn't bend often, but rather goes down on his knees. He walkes a little hunched over and seems to protect his chest sometimes. It will take about 12 weeks for his chest to heal completely. For the time being, we are careful not to lift him under his arms.

Luke is on bloodthinners, but drawing blood proved to be a big problem. Apparently he has difficult veins because they run fin a different direction than most, and they are very deep. (That's partly because our little man is a chunky one!) Regardless, when a local lab, a local hospital and then the 'best poker' in Toronto had problems, we decided that he could not give blood weekly like this. Luckily there is a machine available to buy which measures blood coagulations by pricking the tip of your finger and putting it on a strip, much like a diabetic machine. We were able to buy one of these in Toronto last thursday. Now we can take his blood at home, ourselves, call in the values, and his bloodthinner doses can be managed that way.

It's a time of adjustment for us now. Jack has to get used to being at home again too, after being at Oma's house. Their Oma from Holland and two uncles are houseguests now too so there is lots to see and do.

Hugo and I have already spent hours staring at our beautiful pink child. It is strangest feeling in the world to reluctantly give our little boy over to the doctors and think that he would have such a long, difficult road ahead of him. Rather, in a short time, we got this beautiful pink boy back again. Look at the picture, even his features have changed from the new circulation! Obviously we have only the Lord to thank for this great, wonderful miracle of ours.

Our pink miracle …
Luke has been home now a week and a half and we are very happy with his progress. At first when he came home he had a variety of medicines and was taking tylenol for pain. The most of these are gone now. Luke does have pain sometimes, especially when he coughs or makes sudden movements. We notice though that he is very careful with is body. He doesn't bend often, but rather goes down on his knees. He walkes a little hunched over and seems to protect his chest sometimes. It will take about 12 weeks for his chest to heal completely. For the time being, we are careful not to lift him under his arms.

Luke is on bloodthinners, but drawing blood proved to be a big problem. Apparently he has difficult veins because they run fin a different direction than most, and they are very deep. (That's partly because our little man is a chunky one!) Regardless, when a local lab, a local hospital and then the 'best poker' in Toronto had problems, we decided that he could not give blood weekly like this. Luckily there is a machine available to buy which measures blood coagulations by pricking the tip of your finger and putting it on a strip, much like a diabetic machine. We were able to buy one of these in Toronto last thursday. Now we can take his blood at home, ourselves, call in the values, and his bloodthinner doses can be managed that way.

It's a time of adjustment for us now. Jack has to get used to being at home again too, after being at Oma's house. Their Oma from Holland and two uncles are houseguests now too so there is lots to see and do.

Hugo and I have already spent hours staring at our beautiful pink child. It is strangest feeling in the world to reluctantly give our little boy over to the doctors and think that he would have such a long, difficult road ahead of him. Rather, in a short time, we got this beautiful pink boy back again. Look at the picture, even his features have changed from the new circulation! Obviously we have only the Lord to thank for this great, wonderful miracle of ours.

Dankbaar, blij, opgelucht en toch wat gespannen mogen we meedelen dat Luke morgen naar huis mag. Na een open hart operatie en een herstelperiode van maar 8 dagen in het ziekenhuis mag hij alweer naar huis. In de afgelopen dagen heeft Andrea voor Luke gezorgd in het ziekenhuis en was Hugo weer aan het werk. In de avond was hij bij Jack die bij opa en oma logeert.

Morgen haalt Hugo Andrea en Luke op en zal de herstelperiode zich thuis voortzetten. Andrea zal nog een periode thuisblijven om Luke en natuurlijk Jack de nodige zorg en aandacht te geven.

Via deze weg willen wij een ieder danken die op wat voor manier dan ook ons heeft gesteund in deze weg.

Boven alles willen wij de HEERE danken voor Zijn zorg in deze periode.

Groet,

Hugo, Andrea, Jack and Luke

Dankbaar, blij, opgelucht en toch wat gespannen mogen we meedelen dat Luke morgen naar huis mag. Na een open hart operatie en een herstelperiode van maar 8 dagen in het ziekenhuis mag hij alweer naar huis. In de afgelopen dagen heeft Andrea voor Luke gezorgd in het ziekenhuis en was Hugo weer aan het werk. In de avond was hij bij Jack die bij opa en oma logeert.

Morgen haalt Hugo Andrea en Luke op en zal de herstelperiode zich thuis voortzetten. Andrea zal nog een periode thuisblijven om Luke en natuurlijk Jack de nodige zorg en aandacht te geven.

Via deze weg willen wij een ieder danken die op wat voor manier dan ook ons heeft gesteund in deze weg.

Boven alles willen wij de HEERE danken voor Zijn zorg in deze periode.

Groet,

Hugo, Andrea, Jack and Luke

Day 5
It's hard to decide what to write about Luke. Hugo left on Sunday and so I am with him alone here in Sick Kids. Sunday night at about 10 pm, Luke decided his true vocation was being a clown – he started to act so silly I thought he would truly hurt himself. Then he at 1/2 a pot of chocolate pudding which was basically the first food he'd had in 5 days. Today Luke was also hungry. He had some peanut butter and jam sandwiches for breakfast and lunch. But as the afternoon progressed he was less and less responsive, he didn't want to drink anymore, and he whined a lot. Now I'm not saying he doesn't have the right to whine – after all, his chest bone has been cracked open. I'd probably be doing a lot more than whining! But still, I was a little worried and felt he might be in pain. The nurse agreed with me and he was given a dose of morphine. Within half and hour he was sitting up in bed chowing down on half a pizza and drinking apple juice. Later we went for a short walk, did some puzzles, played some games, and then cuddled on the couch. When I gave him some medicine though around 7:30pm (he hates taking medicine and I basically had to force it down his throat) he vomitted and vomitted all over the place. Later, after he was all cleaned up he vomitted once more, just so he could get a second clean outfit.

I think that he vomitted because of the morphine. I thought the vomitting was over because he had had such a good day, and hadn't vomitted since yesterday. Obviously not. So in the end, I am quite disappointed. However, hopefully tomorrow will be better.

The second worry is his heart. Last night, during the night, I was awakened hourly by his alarm bells. His heart rate continuously dropped through the night, dropping below 65. I just about had a heart attack at once point when I opened my eyes and there was a doctor and nurse leaning over his bed in the dark. In my sleepy confusion I went to help because he was screaming. They were doing an EKG in the middle of the night to see if there was something seriously wrong. Today they put a holter on him, which is a device for monitoring his heart rhythm. It's uncomfortable for him. He has all electrical wires everywhere taped to his body and must carry a little box around with him. I've put him in a zip-up pajamas to keep him from tugging them off, but he can't really sleep comfortably with all this extra stuff on his already sensitive chest.

The third worry is his drainage. He had two draining tubes removed from his chest, but there's one remaining which isn't actually draining much. I had to take him for a chest x-ray this morning which showed that he still has a puddle of fluid on the side of his chest. Somehow this is going to have to come out. With the chest tube in I can't hold him properly and we're not allowed to leave the floor.

So, there are real improvements in Luke's progress. He's eating some now and he's more alert and playful than before. I even made him walk a little today. We have to take each day and each set-back at a time.

Andrea

Day 5
It's hard to decide what to write about Luke. Hugo left on Sunday and so I am with him alone here in Sick Kids. Sunday night at about 10 pm, Luke decided his true vocation was being a clown – he started to act so silly I thought he would truly hurt himself. Then he at 1/2 a pot of chocolate pudding which was basically the first food he'd had in 5 days. Today Luke was also hungry. He had some peanut butter and jam sandwiches for breakfast and lunch. But as the afternoon progressed he was less and less responsive, he didn't want to drink anymore, and he whined a lot. Now I'm not saying he doesn't have the right to whine – after all, his chest bone has been cracked open. I'd probably be doing a lot more than whining! But still, I was a little worried and felt he might be in pain. The nurse agreed with me and he was given a dose of morphine. Within half and hour he was sitting up in bed chowing down on half a pizza and drinking apple juice. Later we went for a short walk, did some puzzles, played some games, and then cuddled on the couch. When I gave him some medicine though around 7:30pm (he hates taking medicine and I basically had to force it down his throat) he vomitted and vomitted all over the place. Later, after he was all cleaned up he vomitted once more, just so he could get a second clean outfit.

I think that he vomitted because of the morphine. I thought the vomitting was over because he had had such a good day, and hadn't vomitted since yesterday. Obviously not. So in the end, I am quite disappointed. However, hopefully tomorrow will be better.

The second worry is his heart. Last night, during the night, I was awakened hourly by his alarm bells. His heart rate continuously dropped through the night, dropping below 65. I just about had a heart attack at once point when I opened my eyes and there was a doctor and nurse leaning over his bed in the dark. In my sleepy confusion I went to help because he was screaming. They were doing an EKG in the middle of the night to see if there was something seriously wrong. Today they put a holter on him, which is a device for monitoring his heart rhythm. It's uncomfortable for him. He has all electrical wires everywhere taped to his body and must carry a little box around with him. I've put him in a zip-up pajamas to keep him from tugging them off, but he can't really sleep comfortably with all this extra stuff on his already sensitive chest.

The third worry is his drainage. He had two draining tubes removed from his chest, but there's one remaining which isn't actually draining much. I had to take him for a chest x-ray this morning which showed that he still has a puddle of fluid on the side of his chest. Somehow this is going to have to come out. With the chest tube in I can't hold him properly and we're not allowed to leave the floor.

So, there are real improvements in Luke's progress. He's eating some now and he's more alert and playful than before. I even made him walk a little today. We have to take each day and each set-back at a time.

Andrea

Gisteren is Luke van de step-down afdeling naar een "normale" kamer gegaan waar wij ook mogen blijven slapen. Gisteren was een intensieve dag. Luke begon met overgeven en bleef overgeven na elke keer drinken. Na diverse medicijnen en wachten kwam dan eindelijk de zee aan ontlasting die nog vast zat in z'n lichaampje. Papa en mama hebben aardig wat lakens moeten vernieuwen. Verder heeft hij geen ondersteunende zuurstof meer en worden vandaag twee van de drie drains uit zijn buik gehaald. Dit moet het ook gemakkelijker maken voor hem om te eten, bewegen, etc. Na 5 dagen heeft hij eindelijk weer wat gegeten. Volgens de artsen zien zij een beeld dat normaal is na deze operatie. Samengevat mogen we dankbaar zijn dat het zo mag gaan en hopen we dat deze lijn zich voortzet. Bedankt voor alle vormen van steun!

Groet,

Hugo, Andrea, Luke en Jack.

Gisteren is Luke van de step-down afdeling naar een "normale" kamer gegaan waar wij ook mogen blijven slapen. Gisteren was een intensieve dag. Luke begon met overgeven en bleef overgeven na elke keer drinken. Na diverse medicijnen en wachten kwam dan eindelijk de zee aan ontlasting die nog vast zat in z'n lichaampje. Papa en mama hebben aardig wat lakens moeten vernieuwen. Verder heeft hij geen ondersteunende zuurstof meer en worden vandaag twee van de drie drains uit zijn buik gehaald. Dit moet het ook gemakkelijker maken voor hem om te eten, bewegen, etc. Na 5 dagen heeft hij eindelijk weer wat gegeten. Volgens de artsen zien zij een beeld dat normaal is na deze operatie. Samengevat mogen we dankbaar zijn dat het zo mag gaan en hopen we dat deze lijn zich voortzet. Bedankt voor alle vormen van steun!

Groet,

Hugo, Andrea, Luke en Jack.

Off the IC!

Luke seems to be doing well again today. Through the night he had his catheter removed. Then today he had his central line removed and two other IVs. He still has one IV. He had his feeding tube taken out, his morphine stopped and his heart medication stopped. He still has antibiotics, some other pain medication, tylenold and a direuretic. He also is still getting some oxygen. Not because it helps his sats go up (these are still quite low) but because it helps his arteries stay dilated.

Just after lunch time today they moved him off the IC into 'step-down.' It's still one-on-two/three care here, but its not quite as intense as in the IC. Hopefully tomorrow he'll get his own room. We're happy about that because then we can make his surroundings pretty and put things around him that he recognises.

Right now he's sitting on papa's lap. He's happy to be there, but he is generally pretty angry with everything else. He doesn't understand why we don't help him and take his pain away. He also hasn't eaten since Tuesday evening, which makes us a little concerned. After all, this is Luke, the king of eating. He is very eager to drink – sometimes too eager. This morning when I was holding him he drank and then vomited all over. His vomitting also caused his central-line incision to open and start bleeing pretty badly. It was a hairy moment in the IC!

Hugo and I are very bewildered, disbelieving but oh so happy that Luke is doing so well. We had expected much different outcomes, espcially after his last operation. Thank you for sharing this experience with us.

The Monsters @ Sick Kids.