An Easter Angel

One of many things I love about our Church is that it invites us to not only worship on Sundays or once a year, but teaches us that faith is an every day issue. One thing latter day saints are encouraged to do during the week, for example, is to have family home evening. This is held for most members on Monday night. The whole idea is to have one night a week where each family member has no other plans than those of being together as a family. We believe that family unity is a core essential for happiness, not only within the walls of all our homes, but also within all the borders of society. So to have this opportunity, in a world that is so stressed it never lets us have time for each other, is a wonderful, not to say inspired idea.

This week we had a special guest for family home evening. It was Lena Bomgren, our Ward’s Primary president (the leader of the children’s program in our congregation). We usually see her every week at Church, but meeting her on Sunday, she said that she felt like she wanted to do something more for our family. She and the other’s in our Ward had done so much good for us already, we thought, but we graciously accepted her offer. We sensed her good will and desire to spread love to our children, and perhaps help Johannes to have some fun, thus taking his mind off the pain in his leg - if only for a while.

She knew our kids loved to paint and do crafts (in Swedish: pyssla), so she brought several bags of Easter-fun. After starting our home evening with song and prayer, and a spiritual thought from the father (which my children reminded me had to be very short this time… ha, ha), then we moved on to the activity, as seen below.

Lena is wearing the red sweater. (How about that suspicious look from Clara?)

Our Easter chickens are done. I can’t help but laugh at Isak’s work of art. He made two of these chickens, one of which is “dad”. Guess who? Yep, the tall one. Every time he depicts me somewhere I am always twice as big as the rest. Funny, cause I’m not that big… although I am involuntarily working on it!

Before Lena left we had mom’s delicious brownies with ice cream. Our children spoke casually with Lena, and my wife and I rejoiced that Johannes, especially, had had a few moments to forgot about his medical condition, and just have a good time instead. That meant a lot to us. Sure, for Lena this might not have been the greatest sacrifice (cause I know she also enjoyed it), but for us it was the greatest blessing of this week. And we know that she did it to make us and our children happy, without any conditions, nor payment from Church funds. Just love - shown in pure service.

So we name her “Angel of the week”, our Easter Angel.

Most Beautiful 35-Year Old

Couldn’t let they day go by without publicly congratulating my wife, Angelica, who turned 35 today. She doesn’t like publicity (and that’s putting it mildly) so I’ll just summarize and say that she is without a doubt a remarkable woman, and I thank God for letting me experience life at here side.

But in this picture, it’s not me at her side, but Johannes. I thought it was fitting, seeing how much love and support he has received from her lately.

After the Heart Surgery

I know that some of you who have read the posts A Prayer for the Heart are wondering about the aftermath of our son Johannes’ heart surgery. Well, as far as his heart goes, he’s done really fine. Everything is healing rapidly, and his chest scar is looking good also (better than before actually). We have also been able to cut down on most medication since he feels little or no pain, concerning that part of his body, at least.

But… something else has happened. Johannes received a problem with his lower left leg. The days after surgery we remember that he complained about a tinging feeling in his left foot, that actually had swollen some too. Everyone at the hospital thought it was just a small thing in passing, caused by the fact that he had laid still for so long. But he had troubles standing up and walking about, and that worried us. Still we were reached by a constant flow of comforting words that this would soon be over - whatever it was.

The thing was, we wanted to know. We just felt that we couldn’t leave anything to chance. Especially when we saw that his leg wasn’t getting any better, but in fact worse. So for a few weeks now we have let Johannes go through another series a hospital visits here in Stockholm, doing all kinds of tests, including an MRT (in Swedish: magnetröntgen). What the doctors suspect has happened (but they’re still not positively sure) is that Johannes’ left leg was somehow exposed to some kind of pressure during his surgery, resulting in nerve damaged. They think it’s something called peroneuspares, a “drop foot” state when you can’t flex the foot backwards.

We had never heard about this so we got acquainted with it on the Internet. Among other things, it stated that although this condition usually is curable, it can take a long time. In some cases people have lived with “drop foot” for the remainder of their lives. This didn’t exactly add to our hopes.

On the other hand, I had a feeling that this was yet another hurtle for Johannes (and us together) to jump over, and that he would heal rapidly. The hardest part, however, has been helping Johannes to believe this also. Throughout this whole ordeal I admire him for his strength in upholding his faith, but I can’t lie and say he’s happy about this last development. Not seldom has he wondered why he had to go through yet another trail; wasn’t it enough to have a heart surgery? Now he’s often in discomfort or pain, and has great trouble walking.

But overall he’s doing his best. I hope we are too. In the end that’s all you can do, and then leave the rest to God. We have given him a blessing, in which we all felt the love of God, certain that He is there, still guiding Johannes by the hand. We also keep praying for his rapid recovery, and grateful to others we know are doing the same.

But although faith is the answer, I think sometimes people misunderstand the principle. It’s not merely believing, and then sitting back, waiting for a miracle. Faith is also a force which motivates us into action. Like now, for example, with Johannes. We have taken him to a physical therapist who has given him some exercises he must do every day. Here faith has to be transformed into a positive attitude; simply put, he has to know that if he works hard at overcoming his ailment, believing it can work - then it will work. I’ve live long enough to know that this saying is true: God helps those who help themselves.

Although Johannes is not filled with these positive thoughts all the time (but who would be), he is working really hard now at his recovery. And whenever his own faith is lacking, his parents will pitch in an extra dose for him. That’s what we have agreed upon. And he’s happy about that. So… however we get there - we will get there.

And you know what? It’s working.

A photo from last week, taken with my mobile camera, showing a happy Johannes. He’s smiling because he finally was let out of the MRT machine. For 45 minutes he had to lay dead still, which up until that day had been impossible because of his discomforted leg. It’s a small miracle… but those count as well.

Johannes says Thank You!

Johannes wanted to say thank you to all of you who prayed for him these past weeks, that he would be safe during his open-heart surgery. I think there are a lot of things he would like to say, but because of the language barrier, it will only be a short message. But I hope you feel his sincerity.

Blessings! Louis

A Prayer for the Heart (7): Clean Hands

We came home to Södertälje today. It’s a five hour drive from the hospital in Göteborg. It was really good to walk through that front door again. We have been gone for exactly two weeks. Every bone in my body ached for my bed, feeling tired after the drive. I am used to driving for hours on end, but today I was worn out. And I know my wife felt the same. Physically, as well as mentally, it has been a non-stop roller coaster ride. Naturally, Johannes has been the one in the toughest spot, but we’ve been with him all the way, trying to carry his burdens together with him.

Now that we are home again I just wanted to say thank you - a warm thank you - to everyone who has been so supportive in thought, prayer, and action these past weeks. We can’t fully express the gratitude we feel. You’re all angels.

We have been so blessed. The friendliest and most qualified nurses an doctors have taken care of our son, with some of the world’s best surgeons to perform the open-heart surgery. We have had great accommodations at the Ronald McDonald House (unbelievably great). In addition, physical therapists, hospital school teachers, play therapists, etc, have been unbelievably supportive. I wonder how much all this service, including the surgeries, would translate into dollars, if we would have lived in the US? $ 10-20 000? Maybe more? Compare that to our bill: $ 0. It’s at times like this I don’t mind paying such high taxes.

I also want to give a thought about rooms. Just days before we signed in, we got word that the heart ward was jammed with patients, that we even might have to move the surgery to another hospital. Apparently, this had been working situation for some time now, even until the day before we arrived at the hospital. However, on that Monday morning, things were very quiet, with only a few patients in the ward. After Johannes’ surgery, he was placed in the Intensive Care Unit. In the past this had also been overcrowded. Guess how many patients were there with Johannes? None. When he came down to the ward again, he was placed, as is normal procedure, in a room for four. How many were there? Only Johannes. The day before and the day after it was full house. After he had to do his catheterisation, Johannes was taken to the “wake-up” room. The nurse at duty said that just an hour or so earlier they had had chaos with far to many patients. How many were there when Johannes came? You guessed it. Zero. Finally, in most cases, patients in recovery get their own family room. We were blessed to get one, but not every family that came after us were that fortunate.

We had heard from everyone what a “tight” situation we’d be facing. Both of us had some concerns about this, but Angelica, being the mother, was most worried, of course. But still we always ended up alone in each room we came to. We became especially mindful of it when we came to the “wake-up” room (seen below). My wife and I just looked at each other in awe. We realized, with grateful hearts, that wherever Johannes had been taken, the attendees could always give him their full attention. The whole thing felt like a surreal blessing. It wasn’t supposed to be like this. But still… it felt like the whole thing was… planned?

This shows Johannes - alone patient - coming out of his sleep in the “wake-up” room, next to the operating room. As we were sitting there, by the soft light coming down on our son, feeling grateful for the sole attention given to him, I saw a small poster on the wall. I didn’t see all of the text, but I saw the headline. It stated: “With us you’re in clean hands”. Then I saw, behind the text, a set of unfolding hands.

Maybe this business with the rooms was all a coincidence, but still… when I saw those words together with the hands, I couldn’t stop the swelling inside and watering of my eyes. For me it was a connotation suggesting there were more “clean” hands here than those that met the eye. I turned to Angelica, pointed and said, “Do you see that? Look at those words!” She saw that I was touched by it, but broke my focus by saying, “You know… that’s a notice to keep your hands clean with disinfectant.” I looked a little closer. “Oh, yeah… I see it better now.” She continued, “What did you think it was?” I answered, “Well… I just liked the words.” I saw then what she was thinking as she looked at me. (You see, I have this “work injury” of always, in each surrounding, trying to be alert of things that give some higher meaning, so I can more readily pull out examples and applications in my religious education classes.) “Oh, you’re too much!” she said, as we both broke into a laugh. (We were already in good, giggly kind of mood.)”I know, I’m sorry” I said.

But I still like the words, I thought, praying that this father’s hands were “clean” enough.

A Prayer for the Heart (6)

Get ready for lots of photos!

Angelica and I have both asked Johannes and he thinks it’s okay to post these photos. We have a large family circle, and this is an easy way to let everyone see and know what’s been happening. I also know that Johannes’ friends and school mates would like to see some photos, since they have been thinking a lot about him. So here are some more images from last week.

This is Wednesday Morning. At this ultrasound examination of Johannes’ heart, the cardiologists find an inconsistency with the blood pressure in the area of the right ventricle, with it’s newly inserted contegra (the “tube” connecting the right ventricle to the lung arteries). They cannot get a correct reading, however, so a decision is made to perform a catheterisation on Thursday to be absolutely sure of what the problem is. Johannes is absolutely devastated upon hearing this news, fearing first of all to be put to sleep again for a small, yet new operation. Secondly, he is told that if the catheterisation shows there actually is a problem, then another open-heart surgery will have to take place - immediately. Being still very week from his first surgery, he now has his most difficult 24 hours of his life, fighting an emotional battle he never faced before.

Thursday morning. Johannes is sitting up for the first time, but finds little joy in that. He knows that today is the day of the catheterisation, and he’s all out of hope, thinking it will only show a bad result. Nurse Anna does her best to try to encourage him.

He spends a lot of the day resting, lying here next to a picture brother Isak made for him. It shows Johannes lying on the bed, surrounded by hearts, with Isak and Clara next to him, with tears coming from their eyes. The text says, “To Johannes from Isak. I miss you. Hugs Isak”

Late Thursday afternoon. The catheterisation is done and Johannes’ opens his eyes in the “wake-up”, next to the operating room. The first thing he asks in a whisper is if he needs a new operation. When his mother smiles and says no, he sighs and let’s out a “yeah!” in English. He’s barely awake, as seen in the photo, but very relieved.

I try to wake him up some more by playing with a surgeon’s glove. Still tired, he asks me to give it to him. He put it on and says, “Take a picture of this.” Then he makes his rock sign (he’s been into that lately). Great, I thought. He’s back!

Bed time, Thursday evening. I like this scene. Mother is looking at son, comforted in knowing that he is at peace again before closing his eyes. Son is looking at mother, comforted in knowing he’s in good hands. And the light from above, falling over him, comforts us all, knowing someone else is keeping His loving arms around Johannes.

Friday we start moving around some more. This is not a sad pictures. It’s just a tired Johannes who’s done some physical therapy, wanting to rest his weary head against his father’s.

Later the whole family comes in. Clara, who hadn’t seen her brother for a few days, was very happy. And so was Johannes. I can’t tell you how joyful we were to have him back to normal again - for his sake.

Here Johannes is trading places with his sister, who didn’t seemed to mind. Actually she loved the wheel chair, as did Isak.

All of the staff were great to Johannes, and to Isak and Clara too for that matter. Here is Maria, the youngest nurse on the floor, discussing ice hockey with the brothers. Notice Isak’s look. He was spellbound by this nurse. I told him later though that she was too old for him. His response was swift. Red in the face, trying to hide his smile, he jumps me and tries to deliver a series of punches to my upper arm. Johannes laughs, and I can’t help but think, again, that it’s good to be getting back to normal.

On Saturday some of the other fathers and I took a few of the heart child siblings aside and played with them. It’s not easy for these kids either, and they certainly don’t get the attention the heart children do. So we decided to give them some quality time. Here is one dad blowing some bubbles.

“I have two questions: How do you catch a bubble, and what do you do with it once you’ve caught it?”

“And how on earth do you make them grow?”

We took these sibling down to ground level, to what is called “Play Therapy”. There they had so many fun things that even I couldn’t resist. By the way… you can call me King Louis.

Is there a limit to how cute one can get?

…or how beautiful?

On Saturday night, Johannes and I was watching the Swedish Melodi Festival. After a while we were joined by nurses Sara and Maria. During those ten minutes Johannes talked more - or should I say jabbered - than he had the whole week put together. Hmm… can’t imagine why? Good sign though, right?

This is the only picture taken on Sunday. Actually, it was just taken recently by Isak, before I put Clara and him too bed in the guest home we are living in, next to the hospital. This night Angelica is sleeping in Johannes’s hospital room. It will probably be the last night there. Then he will get permission to come to us for a few days, in preparation to going home to Södertälje.

I can’t wait.

A Prayer for the Heart (5)

How about those contrasts in life? Yesterday I wrote life is like a tango with steps both forward and backward. Today life is… well… I don’t have the words… but it feels like a SAMBA! Because we’re so happy!!!

The catheterisation of Johannes’ heart went great. The bad signs that were discovered yesterday through the ultra sound was something of a false alarm. We couldn’t be more relieved. And Johannes is another person today. When he woke up from his sedation after today’s small surgery, the first thing he asked in a whisper was, “Do I need another open-heart surgery?” My wife answered, “No, honey, everything looked fine!” He was still to weak to fully open his eyes, but in a daze he said: “Yeah!” spoken in English.

Earlier, when we received the news from the surgeon, we got so excited that we jumped up and down, screaming, laughing… crying. I don’t know how many hallelujah’s and praise-the-Lord’s I uttered, but whatever the number, I am sure it couldn’t have been enough. We were so grateful, beyond words. But still we tried, in our frailty, to say thanks unto God for answering the many prayers offered in behalf of Johannes.

A big thanks also to my brother Richard and his daughter, Mirelle, who took a three hour train ride early this morning, just to come to us in Göteborg and take care of Isak and Clara, so my wife and I could be with Johannes today. The other day it was our good friend Malena who also came and assisted. We are so grateful for all your help.

I’ve got to run! Clara is restless in her bed.

More later….

Louis

A Prayer for the Heart (4)

Life is like a tango: two steps forward, and one step back. Overall it’s good to know you’re moving forward, but sometimes you’ll just have those day in between when everything goes backwards. This has been one of those days.

Well… frankly, it’s not entirely true that it’s been full throttle backwards today; Johannes has actually continued to steadily improve physically. But it’s been a very sad day for him mentally, and his mood has fallen way past his bottom level. I don’t think I have ever seen him so depressed. The doctors reassure us that most children his age react this way a few days after surgery. That may be, but natural or not, I still very sorry for him. Beside the great physical discomforts, that he now takes greater notice of, as the drugs slowly leave his system, he has started to vomit quite a bit also.

But the saddest part for him was the bad news we received this morning from our cardiologist after an ultra sound examination of Johannes’ “new” implantation, a contegra. This is like his former homograft but coming from a bull’s neck vein instead of from a human aorta. It turns out that right at the joint of the contegra and the lung artery, where the stitches are, the blood pressure is too high for some reason. And the ultra sound can’t tell us clearly why. One possible cause is that the contegra is to tight in that end. But the only way to know for sure is to perform a heart catheterisation, where a catheter is inserted through a major vein in the groin, leading up to the heart. There they can monitor exactly.

Of course, this is s a good thing to do if you want real answers. The only problem is that they want to do this tomorrow, Thursday afternoon. This means putting Johannes back to sleep again. And he really, really, really does not want to do that. We just need to find a way to help him get through it again. But… it might not stop there. In an open conversation today I told my son that he might have to undergo yet another major operation, should this small surgery tomorrow show a negative result. Upon hearing that, his spirits didn’t exactly cheer up. But I felt I had to tell him, just to prepare him.

Having said all this, however, Angelica and I both feel that things will soon be okay, somehow. A lot of that confidence comes from our faith, but also from the many thoughts and prayers sent our way from our family, and from many of you. We thank you from the bottom of our hearts.

And while you’re at it, please say an extra prayer tomorrow afternoon.

Warmest regards, Louis

A Prayer for the Heart (3)

As soon as I had saved yesterday’s post, A Prayer for the Heart (2), Johannes started to move. I flew out of the chair I was sitting in, almost throwing my laptop to the floor. I wanted to make sure his wish was honored, that Angelica or I would be there when he woke up.

As he tried to move a part of his left arm, slowly, slowly, Johannes reminded me of a groggy and pale ol’ drunkard. His speech was foggy and remained unclear throughout the whole night, of course, with all those drugs in his body. Still, in my eyes, he was so… beautiful. Tonight, beauty was in a tiny movement, like the raising of an eye brow, or twitching of a finger. Any sign of life was welcome. And although I was never really worried, it still made me happy to see Johannes make the effort to energize himself in those tiny, little steps. (Just think how small things can make you so happy.)

I ended up staying at Johannes’ side all night, catching no more than two hours of sleep in a chair next to him. But I didn’t mind. How could I? It was great to see him becoming his old self again so quickly. He even talked a lot, just as always. This he started to do as soon as the ICU personnel had pulled the respirator out of his throat. A moment later he shocked the nurses when he verbatim repeated the instructions given to him from the physical therapist three days earlier, on how they should help him cough up his phlegm. I just smiled and thought, Yep, that’s my Johannes alright… but how could he recollect that at a time like this. It was truly a good sign.

Throughout the night he continued in the same tracks; with a body in limbo, but a mind racing full speed ahead, asking questions and making comments, soaking in every impression. For the first time it struck me that maybe he would be a great doctor one day, instead of an artist, as he’s often dreaming of. We’ll see… maybe both?

A million dollar moment arrived when the nurses prepared to leave their shift. I wished Angelica could have been there. It was one of those make-your-mother-proud-moments. Johannes carefully raised his arm and grabbed each nurse by the hand and said, while locking his focus deep in their eyes: “Thank you so much… for everything!” Simultaneously they let out an “ahhhhhh”, and one of them added: “No one has ever said that to us before.” I was awestruck. This was not like Johannes. I mean, sure he’s learned how to be cordial and nice to people, but that has worked sometimes more, sometimes less, just like for most children, I suppose. But this time there was something different. He didn’t say those words just to be socially correct. He truly meant every word he said. He was grateful - for everything. The nurses had not only helped him with many practical things; they were also there when he opened his eyes; and they were there to help him start breathing again. This night, at that very moment, to this child, it had meant the world to him. It was everything.

As the night turned to morning, the doctors went on their early rounds, visiting Johannes. They could only agree with what the rest of us had seen, that Johannes was improving at a good rate. And before they left they decided to release Johannes from the two drainage tubes which were injected into his bowels during surgery.

After that I returned to our room at The Ronald McDonald home next to the hospital, and took care of Clara and Isak, while Angelica went to Johannes. And so we have taken turns today. Besides that, the only other news is that Johannes has been taken down from ICU (Intensive Care Unit) to the regular Heart Day Care Center. There he has been sleeping practically all day, as seen below.

Isak came with us to stay all afternoon with Johannes. He knew Johannes needed to sleep a lot, but he still wanted to be near. And besides, there is always somebody nice at the hospital who can play with him. Like Nurse Erik, for example…

Now and then Johannes wakes up, and then we turn him over or something. Here I give him his first treat - ice cream. He enjoyed it… I think.

Tonight it’s Angelica’s turn to stay at Johannes’ side. I pray they both will have a good night’s rest.

Brother Louis

A Prayer for the Heart (2)

See Repairing My Son’s Heart and A Prayer for the Heart (1) for background info.

Before I begin I want to thank the many people out there, family as well as friends and strangers, who have commented or sent their warm greetings. Thank you all! Your prayers have truly blessed us.

Finally. The day we have been waiting for all these years has arrived. Johannes’ heart has kept the beat now for many years, which has been a true blessing, but now it’s time for bit of grand repairing.

Early this morning we went to Östra Sjukhuset (the hospital) to sign in. Here’s Johannes with his mother, Angelica. We’re waiting to be taken up to the top floor. The Teddy holding a heart was a gift from the Primary children of our congregation. Johannes wanted its company during the operation.

A few minutes later we were taken up to the top floor where Johannes met with the anesthetist who would take care of his “sleep” during and after surgery. Up until this time Johannes was still seemingly excited, and talked - a lot.

When it was time to say goodbye he quickly settled down, and I took this picture of him. For us this became a very hard, but special moment. Seconds later, when drugs were added to his system, which quickly put him away, his eyes were flooded as we held his hands. I was so proud of him. Not that he cried, but that he had been so positive and happy all the way to the end. I knew that he had felt fear before, yet he seldom showed it. But now it had started to overtake him; and he couldn’t, despite of how badly he wanted it, hold back his emotions.

How do you do this? I mean as a parent? You’re holding your child in your arms, while he is crying himself into a sedated sleep, afraid he will never wake up again. Now, even though we know that open-heart surgery is a no small thing, it still is “routine” nowadays for these skilled surgeons; we were confident that everything would work out. But to sit there, next to our son, while they put him to sleep, in the midst of his most frightening nightmare, that is a gruesome experience for any parent. We have never learned to deal with that part properly. In fact, I have always hated it. And so it was today, as my wife can also testify of, with her many tears.

Now it was time for the next step: Waiting. Another favorite of ours. But this time, time went rather fast (in the beginning at least). We tried to keep busy doing things with our other two children. My father-in-law also came by and graciously helped us with some food and child play.

At one time, though, I was feeling rather sad, sitting in a little kid’s chair, looking out the window. All of a sudden Clara pulls up a chair of her own right next to me, in which she hops into. She doesn’t say a word, but takes a look at me, as if she analyzing the situation. Then she jumps over to my lap and gives me a warm hug, lasting for a few seconds, after which she jumps down to the floor again and continues to play with her hospital toys. I think someone knew what I needed in that moment, if only for a few seconds.

Then we waited some more. Seven hours total to be exact. If it was just Angelica and I, that would have been one thing, but we had two other children to entertain as well. Although they sometimes did a good job at doing that themselves. Here they are racing around the hallway, their 99th lap. (But I don’t think Isak is fair, letting his little sister run while he’s on the bike.)

And this is the ultimate proof that I was getting bored and restless: I took a picture of a plastic turtle in hospital’s aquarium. Well… I had to do something to take my mind off the operation.

Then we got the call. The operation had been a success, and Johannes was waiting for us at the ICU (Intensive Care Unit). When we got there, he was still heavily sedated and breathing through a respirator. Isak came with us this time. I think he was worried about his brother. But what he saw shocked him, and set him off crying intensely. He simply wasn’t prepared for the scene that met his eyes. But hard as it was for him, it humbled him a lot, cause he had no idea of what Johannes had been through. Later on he didn’t want to leave the hospital, but rather stay with Johannes.

That is where I am now - with Johannes. It’s Monday evening and I’m sitting by his bedside, waiting for him to wake up. The nurses at ICU have told me the signs are good, and that he will wake up any time. I’m so excited.

And I thank God for watching over our son.

A Prayer for the Heart (1)

A few months ago, when I wrote the post Repairing My Son’s Heart (which explains about Johannes’ condition) I knew it wouldn’t be long until the next open-heart surgery, the third one for him. Earlier today we arrived again at the hospital in Göteborg. The doctors are running a few tests for two days, followed by the operation on Monday morning.

I usually don’t ask for much, but we would feel blessed if you would offer a prayer for Johannes, that he will get through this surgery, with accompanying recuperating time, without any trauma to body or soul. I know that he would appreciate it as well. Thank you!

When we came to the hospital today, the first thing we saw on one of the walls was a photo montage of different heart children who had been operated in the past. And there he was - Johannes. I guess it’s easy to see who it is? He was one years old in that photo, and had just come home from his second surgery.

I don’t have too many pictures of me together with my children, since I’m usually behind the camera. But here my wife took a shot of Johannes and I, while waiting to take some X-ray images.

Speaking of waiting, we did a lot of that today. Why not take another picture then with the coolest pillow in the hospital, according to Johannes… and me.

A lot of surgeons, physical therapists, and nurses spoke to Johannes today. Here is the his last conversation with nurse Sara who wants to explain some after-surgery routines.

Through it all, my wife and I were surprised at how calm he seemed. It’s almost like he’s excited about it all, looking forward to getting it done. I’m grateful for that, because it strengthens our faith, and releases some of that natural anxiety a parent carries around as they’re ready to entrust the life of their child into someone else’s hands.

As much as I wish for the contrary, there is not a lot of writing energy at the moment, nor time for that matter. But I hope to be able to report soon again - especially for family and friends who I know are emotionally involved with us at this moment. Until then, thanks again for your prayers.

Louis

For the Endowments of Life

Last week I attended a CES Conference. At one point a friend and colleague gave all the participants a few minutes to write a personal psalm. I’m not a poet, I know, but I was still glad to have a few solitary moments to clear the world from my mind and write these words of gratitude. For the wonders of the earth, I adore Thee For the light in heaven, I see Thee For the glories of thy creations, I admire Thee For the blessing of family, I honor Thee For the companionship of friends, I thank Thee For the power of Thy Word, I worship Thee For the gift of Thy Son, I praise Thee For the Spirit that enlightens me, I follow Thee For all the endowments of life - I love Thee If I were to add (my own) images to my thoughts it could look something like this. For the wonders of the earth, I adore Thee For the light in heaven, I see Thee For the glories of thy creations, I admire Thee For the blessing of family, I honor Thee For the companionship of friends, I thank Thee For the power of Thy Word, I worship Thee For the gift of Thy Son, I praise Thee For the Spirit that enlightens me, I follow Thee For all the endowments of life - I love Thee Comments to some pictures: Nr 4 shows my family; nr 5 shows some colleagues and friends; nr 6 shows a recent baptism in Lodz, Poland, in a ‘home-made’ baptismal font; nr 7 shows one of my Polish Institute students with a painting of Christ in the background.

Repairing My Son’s Heart (2): Hospital Queen

When our oldest son was in the hospital for his heart surgery (see Repairing My Son’s Heart), my wife and I took turns looking after our baby girl. It turned out, however, that she was looking out for herself most of the time, prancing around the place as if she owned it.

First thing she grabbed the stroller and ran, yes ran with it across the hallways.

Then she grabbed a nurse and forced her onto the floor to play.

I actually think the nurse was happy to have a little break. 

In the playroom she carefully choose the right chair and dragged it all the way to the receptionist’s office…

 

… just to have a little chat.

And of course, when big brother was coming down from surgery, guess who went along for a ride?

But most importantly, we couldn’t leave the hospital until daddy had taken that goofy looking surgeon’s glove and blown it up like a balloon. 

It’s a good life for a little girl.

Louis

Repairing My Son’s Heart

Our firstborn came to this world with a serious heart problem. He had holes between the his chambers, which fortunately is a not so unusual condition and easy to fix. But he was also diagnosed with Truncus, meaning he was born with an Aorta but no Pulmonary artery, hence giving his body no chance to receive oxidized blood. The doctors noticed it when he was a week old. I never forget the Cardiologists word during the ultra sound: “Well…” he said abruptly, “your son has a heart failure. He will die if we don’t operate immediately!”Just like that. No forewarning. No preparation. Our child, whom we had been longing for during much tribulation (my wife was very ill during her pregnancy), was now about to be taken away from us. How can one take such news without going into a state of shock.

Today I won’t go into all details, but suffice it to say that our son had his surgery. After eleven hours of complications on the operating table, he heart was fixed after a lot of cutting and pasting; most radically, the surgeons had to place a tube that connected to his heart’s right ventricle, then onward to both passage ways to the lungs. The tube, however, does not grow with the body as he grows older, so it needs to be exchanges from time to time. That happened to Johannes when he was a year old exactly.

Since then we, or rather he, has been very blessed. The second tube has “survived” longer than what is considered normal. The problem, however, is that it will, because of time, tighten up naturally, leaving a smaller passage way for the blood, making the heart pump faster. So the doctors have a important, balanced decision to make: Having to many open-heart surgeries will tare on the young body; operating to late will damage the heart muscle.

We have been told that it is soon time again to have open-heart surgery, but last week we took Johannes to the hospital for a few days, right before his tenth birthday, to open up the tube a little more. The doctors wanted to do this just to buy a little more time. It was simply done (if there is such a thing) by going up through the vein into the hearts right ventricle, and inserting a stent, a tiny steel net, into the tube. This was blown up by an ever more tiny balloon which opened the net so it widened the tube a fraction.

It went well…. we think. Time will tell. Our son handled it all very well, however. We are so proud of him. It’s not easy being a “heart child”, but God has blessed him immensely in is life, giving him an exeptionally good health after all. And even though it is never fun being at the hospital, the staff was great. We have many of them before and consider them our friends. Johannes was treated as a king. Which he is.

Preparing for operation.

After operation, together with his mother.

Recovering in hospital bed with gift from little brother.