History

Wednesday, January 26, 2005 11:58 AM CST

Thanks to all who attended Luke's funeral yesterday. It made the day a little easier for all of us to have so many friends helping us get through it. To the parents of Matt and Lauren's friends - thanks for bringing those kids along. It made a bigger difference than you'll ever know. Your generosity is going to make the memorial donation Deanna and I had planned to Children's Hospital much larger than we had ever thought possible. Thank you.

We do not know what was learned from Luke's autopsy yet. We'll find out about it when we meet with Luke's cardiologist Dr. Baker in a few weeks. We do know that one of Luke's surgeons (Dr. Moga) plans to publish a paper about Luke in hopes of helping other children like him.

For those who were unable to attend the funeral - it was a beautiful ceremony on a warm sunny winters day. There were some tears, a little laughter, and most of all - lots of love. Very appropriate for our little boy. Even though he didn't get much of a chance to experience what this world has to offer, he did experience the most important thing - love. One of Luke's nurses was commenting yesterday about how many people were touched by Luke in his short life. She said he just radiated love.

Sunday, January 23, 2005 12:40 AM CST

Luke's Funeral will be 3pm Tuesday, January 25 at the Church of St. Stephen, 525 Jackson Street, Anoka, MN. There will be a public visitation at the Church an hour before. The burial will immediately follow the funeral mass at Calvary Cemetery. A meal will be provided back at the Church after the burial. All are welcome.

Thanks for all your support.

Friday, January 21, 2005 3:04 PM CST

Our courageous son died this morning. I'm sorry if you are first getting this news here. His Mom and I were there to hold his hand and comfort him. And he held tight to our fingers right up to his last heart beat. He was comforting us as well. Luke knew he was loved by all of you wonderful people and he loved you right back. He was only with us for a short time, but we’re thankful for the time we had together.

We’re not sure what changed about Luke’s condition this morning. Perhaps the autopsy will tell us something. If so I’ll post the news here. We plan to have Luke’s funeral at St. Stephen’s Church in Anoka probably sometime next week. I’ll post the time when we’ve made the arrangements.

Luke was having platelet trouble last evening, but that’s nothing new. He got a transfusion yesterday during the day but by 10pm his platelet count was down to 12,000. So Michelle got him another batch and his 6am labs showed his platelet count at 220,000. That's plenty.

Most of the night Michelle said that Luke’s blood pressure was in the 70s as it had been pretty much all week. He was soft for a time in the evening, but seemed fine after he got those platelets. Then when I arrived for my morning visit, Michelle had just finished weighing him (still 6.0kg), changing his bed, and Luke was getting his x-ray. And as usual, after all that activity and saying hi to Dad, Luke was pretty tired so he went to sleep holding my finger. His blood pressure was a little softer as it had been all week when Luke fell off to his deep sleep in the morning. I could tell he was more tired than usual though. He slept right through until Doctor Baker rounded a little after 7am. Since his pressure was soft longer than usual, Michelle did give him some volume for his blood. That helped for a short time, but the blood pressure went right back down. Luke did open his eyes once when Doctor Baker was poking at him, and he peeked at me again a little later. But he was very sleepy and his blood pressure was hanging in the low 60s and high 50s.

Then just before Mom arrived, Luke’s heart rate started to drop and kept dropping. By this time Anna and Lori were there (2 of Luke’s favorite nurses) along with Jen who was going to take care of Luke today. Doctor Baker was called back to the room and ordered a large dose of epinephrin along with more blood products. That got Luke’s heart rate and pressure back up just as Mom arrived. But Mom knew something was up with all the people in Luke’s room.

Luke held steady with a good heart rate for only about a half hour, but in that time Mom was able to tell Luke she loved him and he gave her finger a nice squeeze back. Then Luke’s heart rate dropped again, and again more blood products and epi. Again this got his heart rate and blood pressure back up but only for a short time. Once his heart rate and blood pressure began to drop again, Luke held tight to Mom’s finger on one side of the bed, and Dad’s on the other. We made sure he was comfortable and told him how much we loved him. Sometime after 9am Luke's heart stopped beating.

It seems like his body just didn’t have the strength to fight anymore. We know his spirit is strong. He never gave up and kept fighting to be with us right to the end.

I also want to mention how wonderful the people at Children’s Hospital have been to us. Luke had very special nurses - especially Anna, Gail, Michelle, Lori, Tonya, and Gaylene who all loved Luke very much. He also had some very talented and caring doctors - Charlie Baker, David Overman, and Frank Moga. Thanks to them for all they did for Luke. They saw what a special little boy Luke was and fought right alongside him every step of the way.

Thursday, January 20, 2005 9:10 AM CST

We're thankful that yesterday was another good day. Luke was ahead on the fluid in/out thing with about 150cc more out than in. His weight remained at 6.0kg, but he looks thinner. In the PICU patients are weighed every morning about 5:30 with scales that are built into the beds. It's not easy lifting everything except Luke off the bed to get an accurate weight. So it's not too suprising that the weight doesn't track with the fluid in/out. The fluid in/out is a more accurate reflection of whether the swelling is going down or not.

The bruising also looks better today. Luke still has 2 black eyes but the rest of his head is clear almost down to his ears. His chest looks better as well, but his back is still purple. The legs look great - they have never looked bad. With this last episode the upper half of his arms got purple and not that's almost all cleared up as well.

The doctors decided to hold off on the platelettes last evening for fear if they give too much Luke's body will stop producing them on it's own. This morning his platelette count was down to 27,000. So he got some. Anna told me that a normal persons platelette count would be around 100,000, but someone with down syndrome might only have about 80,000 normally. So yesterday's 67,000 wasn't all that low for Luke. And his clotting factors are good so they didn't think he'd start bleeding again like he did Friday. He didn't bleed so it looks like it worked out. Luke's body isn't consuming the platelettes nearly as fast as it was, so that's another good sign.

The liver is still a concern, but again the nursing staff assures me they've seen babies with much worse liver problems recover just fine. The whites of Luke's eyes are still yellow, but no worse than yesterday. And I think his skin looks a little less jaundice.

So Luke's assignment today is the same as yesterday - keep getting skinny. He told me he knows that and to stop nagging him. He gets it enough from the nurses ;) Mom and Luke were having a nice visit when I left for work.

Wednesday, January 19, 2005 8:54 AM CST

Yesterday was another one of those little bit better days. Luke lost 300 grams and is down to 6.0kg this morning. He's opening his eyes wide again. This time it looks like the weight is coming off from the top of his head down. He had about 200cc more out than in. The bruising is also going away slowly.

Last evening he started getting a new medicine to help his liver. That hadn't done anything as of this morning's labs as they were a little worse than the day before for liver function. The whites of his eyes seemed a bit yellower to me as well.

Luke also got his platelettes last evening. But his morning labs indicated he was still low - at 66,000 up from 55,000. Usually that number shoots over 150,000 after a transfusion. I hear that sometimes you get a good batch of platelettes, and sometimes not so good. This must have been a not so good batch. I expect he'll get more again today and hopefully this will be a good batch.

Luke seemed more comfortable today. He had a nice strong and steady grip on my finger this morning and kept his eyes open longer than the day before. Still a long road ahead, but looks like we're moving in the right direction.

Tuesday, January 18, 2005 11:43 AM CST

Luke looks a little better today. His bruising is slowly going away, he's opening his eyes a little more, and his grip seems a bit stronger. He had almost 1000cc out yesterday compared to about 800cc in. A -200cc day, but again his weight didn't reflect that. He was up 100 grams.

All his labs continue to look a little better. The one that I'd rather see higher is his platelette count. It's down again today, but not dropping nearly as fast as it had over the weekend. It's when this number gets low that he's been bleeding. He's not that low yet, but he will probably need another transfusion sometime today.

He's off the antibiotics for now as it appears his infection is clear. And he may get a new medicine today to help his liver come back a little faster. I'm told the liver should help with the platelette thing.

I know it may be hard to make sense of all these numbers - it is for us sometimes too. Luke is still very critically ill. Some of the doctors don't think his chances are very good. But his will is strong, and other doctors have told us they've seen kids as sick as Luke pull through. They have no medical explanation for it, but it happens sometimes. So we continue to try and be there for him. We're greatful for each day he gets a little better. We try to take each setback in stride. The setbacks happen less frequently but often set Luke back many of his better days. Yesterday was one of the little bit better days.

Monday, January 17, 2005 2:20 PM CST

Luke had a good day yesterday and is doing well today. He lost 400 grams last night - down to 6.4kg. He looks less swollen and the bruising is starting to clear. All his labs continue to look better. Though he is still chewing up the platelettes, that seems to be slowing down.

He's able to open his eyes pretty wide today. He is moving, but his range of motion is pretty limited. I think he's still pretty weak and the swelling is making him too uncomfortable to move a lot. He had a nice strong grip on my finger though.

This afternoon Doctor Overman took the first small step to closing his chest. He slightly thighted the gortex strips that were soutured in place last week. It seems like a small step, but we're thankful for any step in the direction of healing.

Thanks for all your support. It helps to know all you good people care so much about us.

Sunday, January 16, 2005 9:33 AM CST

Luke's Grandma Long passed away last night. She was diagnosed with pancreatic cancer just ovet a week ago at Abbott Northwestern Hospital. That's just across the street from Childrens were Luke is. We found out then that the cancer was inoperable. So Grandma Long wanted to be somewhere close by. We found a very nice hospice in Brooklyn Center. It is right on a lake and Grandma's room had a nice view. It reminded us of the lake view at Grandma and Grandpa's cabin. Many relatives and friends were able to visit Grandma there last week. She and Grandpa were comfortable there. Grandma's funeral will be in Southern California probably next weekend. Luke knows Grandma loved him very much. She came to visit often before she got so sick.

Our amazing son had a better day yesterday. He's still very swollen and bruised, but all his numbers are a little better than they had been. The best news is that the PD runs took off 1200cc yesterday. Again up from the day before and his fluid intake has remained pretty steady at around 1000cc. So that's over 200cc to the good yesterday. For the first time in a while Luke's weight reflected that. He was down 100 grams this morning. His platelet count looks like it's coming down again - but much slower than it had been.

Luke opened his eyes and looked at me for over a half hour this morning. His grip on my finger was nice to feel too. He hadn't been able to do that much the past few days. He's able to open his eyes pretty wide, but it's hard to keep them wide open so he was mostly just peeking at me with his left eye. It's good to see he's still in there fighting.

When Luke was awake both Tonya and I could tell he was a bit uncomfortable. We decided to give him a small dose of vercid and he was able to rest again.

Saturday, January 15, 2005 10:44 AM CST

It was a good afternoon and evening. The PD runs were productive and it looked like Luke was starting to get rid of the excess fluid in his tissues. The bruising was also clearing up quite quickly. The concern was that his clotting factors and platelettes were getting low again. Not wanting to set him back with another transfusion, the doctors decided to hold off on the blood products. Overnight he had 2 bleeding episodes. The first from his lungs seemed more severe, but Michelle was able to get it stopped quickly. His sats didn't drop all that much and his lungs didn't sound all that tight either. Then at about 4:30 it happened again. The bleeding in his lungs was less severe, but the fluid taken off with his PD runs turned pink again and several of his wounds started to ooze. Michelle was also able to get that stopped rather quickly, but it seemed to take a lot out of Luke.

He's been sleeping since then. His bruising is mouch worse as well. He is very tired.

The good news is that his blood work is indicating his liver is coming back. The numbers made a significant move in the right direction.

Luke's weight is up another 200 grams to 6.8kg. This really is a puzzle since he's either been even or ahead with his ins and outs all week. He still put out over 1,000cc yesterday and seems to be keeping pace with that today.

So in a nutshell, looks like another significant setback. But there is still a little hope in some of the numbers.

Friday, January 14, 2005 9:06 AM CST

Luke had a stable night. No fever and his blood pressure was good. The fluid his PD is draining also changed after surgery. It used to be blood tinged, but now looks like urine. We're thinking that's a good sign. He also had 1100cc out yesterday - up by about 100cc over the past few days. On his chart he was ahead on ins/outs by 200cc. But the chart doesn't count all the stuff he got in the OR so he was likely behind. His weight also reflects that. He's up 200 grams to 6.5kg now. His labs are looking better too.

He was more active this morning. He was able to open both eyes and his grip is good and strong again.

Luke still has a long way to go. And we know that his body just might not be strong enough. But he's still fighting. We're hopeful that moving his art line, IV, and getting rid of that sponge that shouldn't have been in his chest will help him over the hump. All we can do now is pray that he has the strength.

Thursday, January 13, 2005 1:30 PM CST

The news is a little better today. Luke had a new IV put in - one that is able to stay in longer without as much risk of infection. While that was being done they also sutured in something that will allow them to slowly draw Lukes chest closed and got a new arterial line in. Luke did well in the OR. He's back in his room now and doing fine.

Also in the OR they found an old sponge that had worked it's way deep into his chest cavity. It must've been missed one day when changing the dressings inside his chest. This could have been causing some irritation and contributing to the swelling. So it's good that they found it and got it out.

Luke was ahead on ins and outs but just slightly. They've increased his PD runs to every half hour. He's tolerating that well and it appears they'll get more fluid off that way.

Luke's weight stayed the same. With the OR today I don't expect it to be down tomorrow either. But he's no worse today. We're hoping he can get things headed in the right direction now.

He's still pretty knocked out from OR. And he was pretty tired this morning too. He didn't open his eyes, but he did give our fingers a little squeeze this morning. And he did the same for me just before i ran upstairs to give you all this update.

Wednesday, January 12, 2005 11:03 AM CST

I'm afraid I don't have much good news this morning. Luke's weight is up to 6.3kg. He was only slightly behind with under 100cc more in than out yesterday. But the swelling is worse. I'm pretty sure this is the heaviest he's been.

One of the docs stopped by this morning and though he admitted nobody knows exactly what's wrong, he thinks the problem may be related to the clot at the tip of the femeral IV. They tried to get another look at it with an ultrasound earlier in the week, but with all the swelling and other issues, that proved impossible.

Luke spiked a fever a couple more times. Each time his nurse was able to control it with either a cold compress or an ice pack.

Luke is still fighting to get better. As soon as i put my finger under his hand this morning he held on. And as soon as I said good morning he opened his eyes good and wide to look at me. We talked for quite some time, and then Luke fell asleep. He woke up several more times and we visited. Then he started to look a little uncomfortable when Lori was doing some of his cares so she gave him something to make him more comfortable. His spirit is still strong. We just pray his little body can find a way to heal.

Tuesday, January 11, 2005 9:53 AM CST

We had another scare yesterday. Luke's oxygen saturation levels dropped rapidly to 40% at about noon. Jed (Luke's nurse) immediately called a respitory doctor over. They were able to determine that a plug of mucus and dried blood had blocked the airway into his right lung. One of the docs was able to thread a suction tube into the right airway and clear the blockage. By the time I arrived, the crisis was over and Luke was resting. X-rays they took during that episode revealed some fluid behind 1 lung and a little air behind the other. Dr. Overman decided to put a couple chest tubes in to drain that. He said this can be rather common when a baby's chest is open this long.

Luke's o2 sat levels are still a bit lower than they had been before the bleeding on Sunday. The docs say that's pretty normal as blood can badly irritate the lung tissue and it often takes a while to recover.

The main concern continues to be swelling. It's concentrated in Lukes upper body and head so today they plan to do another ultrasound to see if they can find a clot somewhere that would explain it.

Luke was still ahead with ins and outs over the last 24 hour period - by 140cc. But his weight still went up 100 grams to 6.0kg. He's able to open both eyes now which is an indicator that the swelling is going down, but he still looks nearly as swollen as he's ever been. The amount of fluid his PD runs were taking off dropped to an average of 18cc overnight, but this morning he picked back up to about 25cc per run.

This morning he was much more alert. He held my hand tight and would stay awake to look at me or Mom for a good long time. Then he'd sleep for a few minutes and wake up to hold our finger again and look at us.

Monday, January 10, 2005 10:41 AM CST

Luke had a setback yesterday. When he was being suctioned (a very routine thing when on a vent) his lungs began to bleed. The doctor was able to stop the bleeding with medication and Luke is stable.

The doctors were concerned that Luke's blood was getting a little too thin. They were trying to treat him for a clot they found last week by his main IV line. So to deal with that he was given more blood products yesterday. This contribited to some more swelling and a lot more bruising on his head and upper body. Though it's not really bruising - that's the best way to describe what it looks like.

After that, Luke's oxygen saturation levels had been a bit lower and he looked a bit more dusky. He's also less active again. But before I left for work this morning his saturation levels seemed to be on the rise.

With all the blood products he got yesterday, Luke only had 40cc more out than in. His weight was back up to 5.9kg this morning. The dialisis treatments they've been giving had been very consistantly getting fluid out, so the doctors are thinking about getting a little more agressive with that.

Luke's still working very hard to get better. Hopefully he'll be able to turn the corner soon.

Sunday, January 9, 2005 11:11 AM CST

Luke woke up and looked at me with those big beautiful eyes first thing this morning. His grip on my finger was nice and strong too. He looks better. He was awake and active for Mom most of yesterday afternoon too.

His blood pressure remains strong. And the infection doc stopped by and said that he thinks the blood infection is gone. Though he'll continue treat Luke with the antibiotics for a full 21 days. The heart surgeons comment was "isn't that beautiful" when changing the dressings in his chest yeasterday. That means no sign of infection there. And the bladder infection has cleared up too.

Luke still weighs 5.8kg - same as the night before. But he was 300cc ahead on the ins/outs. That means he is giving up some of that excess fluid in his tissues.

Luke did have another fever last night - but it was only 99.6 degrees. And Dana didn't have to use a cold rag or anything to help him regulate his temp last night.

It's been a good day. Thanks for all the prayers - it is helping.

Saturday, January 8, 2005 1:34 PM CST

Luke had a quiet night. His blood pressure stayed strong. The lower pressure from the day before may have been due to him being a little more sedated than usual.

He is a lot more sleepy today. I think that's due to the switch in meds. They do it slowly, but it still seems to take him a while to get adjusted.

The biggest concern is still how swollen he is. He gained 100 grams last night. But he was still ahead slightly with more fluid out that in over the last 24 hours. Usually, the fluid in/out is a better indicator of whether he's getting rid of the excess fluid in his tissues. So we'll see if his weight reflects that tommorrow. The main reason he was only slightly ahead is that he needed 80ccs of blood yesterday. If not for that he was about par with the ins/outs for the rest of the week.

His bruising seems to have stopped getting worse. It may even be getting a little better.

Friday, January 7, 2005 11:15 AM CST

Luke spiked a fever overnight, but the nurses and docs concluded it was just related to withdrawls from his medications. They are planning to slowly switch him to other stuff to keep him comfortable and minimize the withdrawl symptoms.

He continues to remain pretty stable, though his blood pressure has been a bit softer and he is not getting rid of the the excess fluid in his tissues as fast as we would like. He lost another 100 grams last night. And he continues to have more outs than ins as the PICU folks like to say. That simply means that they can confirm through all the tracking of IVs and transfusions, urine, and fluid taken from the dialasis treatments that he is getting less swollen. He's just doing it slowly.

On the infection front there's good news - his white blood cells are back in the normal range. So that's a positive sign. Still not sure when or how they'll be able to close his chest. At this time the docs are leaning toward putting another gortex patch in place and with that, slowly closing the wound. But it's still a waiting game - mainly on the swelling.

Luke woke up, looked at me, and held my hand for about an hour this morning. Deanna just said he was awake for her this morning too. So we know he's still fighting.

One last thing - a teacher at Matt and Lauren's school had a neat idea. She made up light blue ribbons with a little heart that had Luke's name written on it for people at school to wear as a sign they are praying for Luke. All the kids in Matt and Laurens classes, as well as most of the faculty and staff had them on yesterday. Deanna had one on too. That was nice.

Thursday, January 6, 2005 11:18 AM CST

Luke has had a good couple of days. According to his labs, it looks like he's getting the upper hand on his blood infection. He is retaining a lot of fluid though. His pre-op weight was 4.8kg. This morning he weighed 5.8kg, down from 5.9 yesterday and he had 100cc more fluid out than in overnight. So all that is pointing in the right direction. The next big step for him will be closing his chest. We're waiting until he's closer to his pre-op weight for that. It certainly will not happen this week.

Lately he's been maintaining his blood pressure very well. Best he's done since before the first operation. In fact, he's within the range of a normal healthy baby. With that, his kidneys are starting to kick in again. Still small amounts of urine, but it is increasing. All these are good signs.

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