Home at last..........

We are finally home!
Luke was released from the hospital Wednesday afternoon and he made it home after being in the hospital for 3 weeks.

He has some stitches to get out next week and a surgical follow up in 2 weeks, but otherwise he is doing pretty good.

Thank you for all the prayers....we felt everyone's love and support more than you know. We could not have done it alone.

KAAL

So close, we can taste it!

The Dr's just came in this morning (following a "stat" 6:45am xray) and said that things look good. They are waiting for a final report from radiology, and assuming that they concur with his Dr's, we will begin the hospital discharge procedure. There is no visible pneunothorax (collapse) of his lung, although they did say that his left lung remains a bit shy of 100%; due to the stapling that took place near the apex. They did say however that the lung may gain some of that capacity back, as he gets active again and his breathing improves.
If all goes well, we hope to be home this afternoon!

More to follow.

KAAL

No more chest tube!!!

Moving at a slightly quicker pace than we had expected, the Dr's came in this morning and removed Luke's chest tube. Even with a dose of drugs, it was a painful process, but one that we are all very glad that it took place so soon. There was another chest x-ray done today and we expect that there will be another one taken in the morning. Assuming that all goes well, it looks like we will be heading home sometime Wednesday.....finally!!!!!
Stay tuned for more details.

KAAL

More pictures

Alex w/ Ike Holt

Grandparents w/ new helmets for their off-road "Razr"

Grandpa w/ Christmas present

Grandma w/ Christmas present

Luke w/ you know who

Here are some additional pictures from our stay at Stanford.

KAAL

The Home Stretch

The Waters family

Nick, Nick, Emily & Mom

The Herrins & Lisa Cardenas

Allison's new Christmas tray

Grandma & Grandpa

Well, a lot has happened since the last entry, so I will do my best to catch up.
In the previous Christmas Eve post, it left out our evening visitors, who helped to make the evening very special. Our friends, the Herrin family & Lisa Cardenas, came out to see Luke and along with my parents, Owen & Carol, we enjoyed a very wonderful Christmas Eve together.
Luke remained in a fair a mount of pain on Christmas Day, but we could see some improvements and his lung remained leak-free.
Sunday was a fairly quiet day, with a lot of rest, some football watching and more visitors (thanks to Luke's friends Nick, Nick & Emily as well as the Waters family).
At the end of the day, Alex left with my parents to head back to the hotel for a good night's rest, and before they could get to the elevator, she had a seizure. To say the least, it took us all by surprise. But it goes without saying that if you are going to have a seizure and you want immediate medical attention, have one in the hospital. Also, make a note that if you want to be surrounded by a lot of doctors and nurses quickly, just shout Code Blue a few times, late at night in a hospital.....that seemed to work pretty well.
They rushed her down to the ER, where a series of blood & urine tests were done, an xray of her neck (she was in a lot of pain) and once everything checked out and she was stable, they released her. We took her back to our home away from home (room #3525), and she has been resting since.
This morning, grandma & grandpa came back by to check up on the kids, before they headed home to SoCal. We really enjoyed their long visit up here (since last Thursday) and we really appreciate their help in making Christmas in the hospital a special and memorable occasion.
The Dr's finally turned Luke's suction off today and things continue to look good there. We will remain on this course until Wednesday, when they will finally remove the chest tube altogether.

This has been an unbelievable journey for all of us and I know there will come a time when it will all make sense. We are really looking forward to coming home and helping Luke to enjoy the remainder of his Christmas break.

Thank you for all the support!

KAAL

Christmas Miracle!

For the 1st time in 2-1/2 weeks, Luke's lung is not leaking!! Last night, we could see over the course of several hours, that the leak was becoming less noticeable. But when we got up this morning, there were no bubbles and when the surgeons came in, they smiled and said that it was the Christmas miracle they (we) were all hoping for.
We have about 48 more hours on suction to make sure that the leak is gone, then another 48 hours on water seal, then I believe we can think about coming home.
We have enjoyed our "makeshift" Christmas here in the hospital today. We started with hot cocoa and some donuts & pastries. We then opened presents with grandma & grandpa (Owen & Carol); all the while Luke was struggling with his pain. They gave him Oxycontin for the first time today, and he has been able to sleep better than ever; and we are thankful he can get the rest.

Thank you all for the love, support, prayers & visits.

KAAL

Christmas Eve

A little Yuletide cheer

Holiday snack buffett

Carolyn Lewis working her magic on Luke's aching head.

Glen & Carolyn Lewis

Steve & Braiden Young

Matty & Seth's visit yesterday

Today has been a busy day so far, with our main focus being Luke's comfort and pain control. Things are looking up after the surgery and not only is the leak in his lung way less than before surgery, but it looks a tiny bit better now than it did last night.
There have been some wonderful Christmas Eve experiences so far. Earlier today we heard some beautiful Christmas music coming from a harpist and a family musical ensemble, out near the nurse's station. Luke's grandparents (Owen & Carol) have been here since last night, Brad & Quinton Ambridge as well as Glen and Carolyn Lewis came to visit, along with a surprise visit from Steve & Braiden Young (thanks to Susan Miguel).........not to mention the one & only Santa Claus!!!
Luke remains incredibly strong, in spite of his pain & discomfort. We are so happy that things went well last night and we are very hopeful that he will make a full recovery.

Thank you for the continued love & support.

KAAL

Surgery is done!

Finally around 8pm, the surgeon came in and talked to us about the long surgery. She said that she spent the 1st hour looking for the hole in the lung, then a 2nd hour separating the upper part of the lung from where it had stuck to the chest wall after the pleurodesis that was done on the 12/13/10. Finally after those 2 hours, they found the problem; a 3mm to 4mm hole in his lung. They spent another hour or so stapling that area and making sure that they do their best to close things up, but they couldn't get too aggressive because it was getting to close to certain critical parts of the lung. They also found a couple of small blebs on the lower portion of the lung, but their size didn't warrant stapling, so they put some sort of plasma gel (glue) on them. They also put this "glue" on most of the staple points along with any other weak spot on the lung that needed it. Afterwards, they introduced the inflammatory agent (talc) into the lung, to initiate the pleurodesis. She said that it should stick great, because they put a lot in there.
When they were re-inflating the lung after surgery, they said they had a couple of minutes with no leak, but they also observed a small air leak later. We can easily notice that the air leak we see in the water seal device, is greatly reduced from before and we're hoping that it will clear up completely during the healing process.
Best case scenario, Luke will need about 3 more days on suction and if the leak appears to go away, then he will go on a different water seal tube (no suction) for 2 days.

We're very thankful that things went as well as they did, and we can only hope and pray that things will improve from here.

KAAL

Thursday, 7:30pm

Still in surgery. He has been in for nearly 5 hours. Last word was that he was stable, but no word on how long things would take.
More to follow.

KAAL

Thursday, 2pm

We are down in pre-op right now, waiting for Luke to be taken in to the O.R.
We have all decided that a 2nd surgery (3rd if you count the 2nd chest tube) would be the best choice, considering the lack of improvement in his condition. We are hoping that the Dr's will find the source of the leak, and that they'll be able to fix it permamnently.

We'll keep you posted.

KAAL

Thursday, 9am

Nothing to report yet. X-rays were done early this morning but we have not heard from the Dr's. We had a nice family night yesterday. The girls just returned from their trip home, where they checked on Eeyore, did laundry, picked up some meds and caught up on some things. Once Luke was taken off NPO status, Alex & I ran to downtown Stanford and picked up some dinner at Pizza My Heart (Luke's choice). We played Yahtzee, watched some tv and enjoyed being together as a family again.

More as it happens.

KAAL

Wednesday, 7pm

Another visit from the Dr (probably the last one for the day) and it looks like nothing is going to happen today. The IR case schedule was full all day and they were trying to squeeze Luke in, and never could. They finally took him off of "NPO" status, so he is finally able to eat for the first time today....poor guy.
His spirits remain strong, but our hopes of getting out before Christmas are dwindling. We will continue to fight hard to get him healthy ASAP (that has always been our goal) and we will let the chips fall where they may.

Thanks for all the support, and please don't stop praying for him.

KAAL

Wednesday, 4pm

Just met with Dr. Gerry and we discussed Luke's CT. He said that they are pushing real hard on the IR department to get him down there and do the add'l chest tube to help fix the lower pocket of air. He also mentioned that it appears on the CT that the upper pocket of air and this newly discovered lower pocket may be completely separate, and fixing the lower area may not bring closure to the upper area.
Lots of unanswered questions. We'll just take it one step at a time.


KAAL

Wednesday, 3pm

We just returned back to the room following Luke's CT scan downstairs. Now we wait to hear from the Dr's after they consult with the radiologists. More later.........

KAAL.

Wednesday, 1pm

Luke is working with the physical therapist right now, trying to stay in shape.
A CT scan has been ordered and we are waiting for word on when they'll take us downstairs for that. We're not sure if they will be able to do the procedure today (pleurodesis/add'l chest tube), but we are still hoping and praying for anything that will help.

More as it happens.

KAAL

When all else goes wrong, look for something Wright

The things you'll do when the Dr. pulls your shirt up to change the dressing on your chest tube!

Great friends Derrick & Breanna Lake

Friend, fellow hunter & former SF 49'er Eric Wright

Tuesday brought more confusion, a lack of answers, some more wonderful visitors and some hope for a last minute, pre-Christmas fix.
Luke started early with a couple more x-rays (one from the front and one from the side), then the Dr's came for another visit. There was very little change from Monday's x-rays and we were still searching for answers. We discussed a whistling/leaking sound that we had heard in his chest tube starting Monday night, but we could not duplicate it. One thing they had noticed on the x-ray was that the upper chest tube (pigtail) had been slowly inching its way out of the chest and was most likely not providing any suction for the lung anymore. They decided to remove it right then (much to Luke's dismay) and that left him with only the main (original) tube in his chest.
While we discussed our mutual desire to avoid surgery, we also made sure to explore all options. They replaced the remaining suction tube and the water seal device, just to make sure we could eliminate the possibility of there being a leak. We also made arrangements for a representative from Atrium (water seal device manufacturer) to drive from Concord (60 miles) for his assessment of the equipment set up. Everything checked out fine.
We were once again visited by the Dr's in the evening, including the attending surgeon, Dr. Butler, whom we had met yesterday. She said that when she closely reviewed Tuesday mornings lateral (side) x-ray, she noticed that there was a noticeable pleural space in front of the lung. This had not been picked up in previous x-rays. All attention had been focused on the area at the top of the lung which had not yet re-inflated and is easily noticeable from the front x-ray. Now this newly found issue gives us the most hope for our well needed miracle. On Wednesday, the tentative plan is that the Dr's will consult with the IR (Interventional Radiology) team and see if they are all thinking the same thing. Then they will most likely go in the front of his chest and do another pleurodesis on the lung; this time in the front instead of the top. This will be done with a liquid (antibiotic) and will cause the lung to become irritated and inflamed, which allows it to scar and stick to the chest wall when re-inflated. Also, when there is a hole in the lung, they try to get the lung up against the wall asap, because the hole will seal quicker. That is what we know so far.

We are hoping and praying for this to be the procedure that gets Luke out of here.

Thank you for all of the prayers.....they do not go unnoticed by the Browns.

Love,

KAAL

Monday night is family (& friends) night

Spencer Holt taking time out to beat Luke at PS3

Luke's medical "Pit Crew"

The Williamsons

The Bigelows & Larsons

Alyssa & Brooke

Lloyd unpacking his world famous frozen yogurt

Brain Freeze


The Cardozas

Not everything in the hospital is tough
(play on the iPad while Mom feeds you dinner)

Once again, a sincere Brown family thank you to all the visitors. Luke appreciates it more than you'll know. We are trying to take pictures of everyone (for Luke & the blog), but sometimes we forget.
In the last 24 hours Luke has received stuffed animals, brownies, fruit, sandwiches, sunflower seeds, candy, frozen yogurt, games, books....too much to list. He's enjoying his PS3 being hooked up in the room (some visitors are enjoying it too) and Jared Cardoza even loaned him an iPad until he came home!!
Today brought more medical head scratching and a new surgeon who wants to keep trying different things to help him get home soon. No one can understand why it is taking so long for the lung to heal, but we all agree that we have to try the easier/simpler things first; since we know that another surgery is not recommended.
They've done several more x-rays in the last 24 hours to look at the lung and to get a more precise picture of where the main chest tube is located (in relationship to the collapsed portion of the lung). They are happy with its position and they decided that instead of going for a 3rd chest tube, they changed out his water seal devices and increased the suction pressure from 20 to 30. Bottom line is that even though most of the collapsed portions of the lung have re-inflated, there is still the top section which has never re-inflated after surgery. The air leak is aggressive and steady and we hope that if the increased suction can help to re-inflate the lung, then that will give the hole a chance to heal/seal up. We will see.
In spite of this bad situation, we are able to count our blessings and we always remember how much worse things could be.
We are all together.
We are able to stay the night with him.
We have family and friends that love and support us.
And ultimately, we have faith that Heavenly Father knows what Luke is going through. He knows what we are all going through. He would not give us this or any other challenge, except that it will make us stronger and prepare us for other things. We acknowledge His hand in all things and we know that everything happens for a reason.

Thank you for caring enough to follow Luke's progress and for the countless prayers that are said for him. We so appreciate it.

KAAL

Weekend update

Pictured here is Luke's "stuffed support team". Friends/family have been good to him and he SO appreciates all the love and prayers. We also learned the other day that they make a shower cap that has no-rinse shampoo built in, so you can wash your hair in bed with no mess of fuss. I think we should get some of these for later, in case one of us needs to get cleaned up but we're too lazy to get up to do it.
Luke continues to fight the good fight, in spite of his unchanging condition. The Dr's told us today that unless something amazing happens by tomorrow or Tuesday, they will most likely do a CT scan, then possibly put a 3rd chest tube in to help try and inflate the lung.

Saturday's news

Last night Luke wanted to try pizza again, so we called our friends at Round Table and got it delivered to the hospital. He ate pizza, breadsticks and rootbeer, and seemed to do fine with it all.......until he got his meds a couple of hours later. Oh well.
We met with the surgical team again this morning and we discussed the decision of waiting for the lung to seal up on its own versus the option of going back in for another surgery. The attending surgeon said that going back in is ill-advised and if it was his son, he would not entertain this option right now. Their concern is that since the pleurodesis (promotes the sticking of the lung to the chest wall through scar tissue) was done on Monday, then going back in for surgery would end up being very traumatic to the lung and to Luke. They feel that eventually the body will most likely heal itself, but it is hard to put a time frame on that process.
Not much is expected to happen this weekend....just more waiting. Luke is getting out of bed a couple of times a day and sitting in a chair next to his bed.

Friday morning

Just received the visit from the surgical team and they observed that the leakage from the lower chest tube looked slightly improved. They said that they want to have us continue to wait and basically do nothing. In an effort to minimize medical micro management, the doctor said that they will discontinue daily x-rays and give the body several days to do what it needs to do, then they will x-ray the lungs again after the weekend. He said that sometimes they watch things too closely and make decisions based on little changes; which isn't always in the patient's best interest.
One of them also mentioned that they may call for a physical therapist to come see Luke, because of their concern that he hasn't been mobile in nearly 10 days.
We've gone back to giving him the pain meds every 3 hours, which I think is better; but unfortunately he woke up in a lot of pain after a sleepless night.

As always, thank you for the love, prayers and fasting on Luke's behalf.

KAAL

Stanford sunrise

As we wrap up another day here at LPCH (Lucille Packard Children's Hospital), we seem to be no closer then before, on a fix for Luke's lung. The surgical "dream team" visited with us today and scratched their heads when they saw that the leak was not healing. They even questioned the equipment, but once they tested it, they confirmed that it was in working order.
They said that we just have to wait it out. They don't want to go back into his chest right away, and they will if they have to, but that will have to wait for now.
In the meantime, he is trying to manage the pain with lots of dilaudid and some benadryl to help with itching and lack of sleep.
He enjoyed the visits today from his friends and even managed to check his facebook a time or two.

KAAL

The Lawrence Welk Show

I'm not sure how many of you have had the experience of listening to suction going through a "water seal" device, let alone two at the same time, but it sounds like we have a giant fish tank in the room. Sometimes I even feel like Lawrence Welk himself is about to walk through the door, surrounded by bubbles, playing a polka tune on his accordion. Wow.........I think I'm really starting to lose it now.
Anyway, another visit from the Dr's this afternoon, and it looks like we will remain in the "wait and see" pattern for a while. They mentioned that his x-ray showed a very slight improvement (less collapsed area) in the left lung, but they are very cautious about getting too excited at this point. We, however, will take what we can get!
He's doing a few breathing exercises each day and he is resting comfortably right now.

Love,

KAAL

Stand by to stand by......

Last night was definitely better than Monday night, as it relates to Luke's pain & discomfort. He is still in a fair amount of pain and is really being a trooper about putting up with all of this.
The Dr's came in this morning and reviewed his progress, and unfortunately his lung is still leaking air. They have 2 chest tubes in his left lung cavity now (one upper and one lower) and each one is hooked up to suction to help to remove the leaking air. With the leaks still occurring, it shows that the lung has not sealed up and that is the first thing that needs to happen before he can have the tubes removed and head down the road to recovery.
He is understandably frustrated, but his spirits remain strong. We even had a good laugh (at his expense) last night, and saw what Luke would be like if he was an alcoholic. As he was coming off the anesthesia and was still loaded up with pain meds, he was very adamant about his need and perceived ability to get up and go to the bathroom. Even though he was pretty incoherent, he was alert enough to know we were cracking up, and that's when it got really funny. Thank goodness for washers/dryers on the 3rd floor here in the hospital; they came in handy last night................and I'll leave it at that.

Thanks to everyone for the outpouring of love, support and help. We appreciate it more than you'll know.

Love,
KAAL

....even more Tuesday news

Second chest tube in, procedure went well. Surgeon explained that it is too soon to tell whether the lung is going to completely recover and re-inflate. She said it is possible that he may not get complete restoration of his left lung and we will cross that bridge when we get there.
We're back in the room and he is pretty loopy. Right now, we're dealing with one of the side effects of the pain meds; it slows your system down and nothing comes out. It's always something.
Good news is that his pain is managed and hopefully he will sleep better tonight. Tomorrow will tell a lot.

Thanks again for all the love and prayers.

KAAL

....more Tuesday news

Smaller, more frequent doses of pain meds are working better and helping to keep Luke comfortable.
Surgeon just left and the plan is to take Luke down to the O.R. later this evening and get the second chest tube put in. This will hopefully help the lung to re-inflate and start him down the road to recovery.

Tuesday news

Luke's lung is continuing its struggle to completely re-inflate. We just met with one of the surgeons again, and here is the update. They will be increasing the suction on the chest tube, which may help to inflate the top of the lung. If not, they will most likely need to put in a second chest tube in the upper front section, so that it can access the top of the lung better. This may be able to be done bedside, otherwise it's back to the O.R.
They've up'ed his pain meds so he is a bit more comfortable for now.

KAAL

Post-op

After a long day of waiting, Luke was finally taken down to the surgical floor around 4:15pm Monday. We were given our beeper (so they could notify us when he's in recovery), and we went to the cafeteria for dinner.
Around 7:30 or so, the surgeon came out to speak with us and said that things could not have gone better. They stapled off (16 staples) the problematic section at the top of his left lung, then did he pleurodesis by irritating the lung and cavity by scraping it and applying talc. This will allow the lung, when re-inflated, to stick to the cavity wall via scar tissue, thus minimizing the chances of future collapses.
In the recovery room, Luke was in a lot of pain and the xrays showed that his lung had not fully re-inflated. We waited an hour or two, did more xrays and they decided to send him back to his room to sleep and will re-evaluate things in the morning.

Holiday decor

Monday morning, the girls showed up and brought some holiday ambiance. It's not easy to make a hospital room warm and cozy, but you do what you can.

Waiting for surgery

It is a gray & gloomy day in Palo Alto, but things are going well for Luke. He is feeling much better than last night and surgery is scheduled for 2pm.
Not much new to report; the doctors/nurses are great and his room is wonderful.

Thanks for all the love, support & prayers!

KAAL

Sunday night

Today was not as comfortable for Luke as other days; I think there were some pre-surgery nerves. He struggled with headaches and nausea, but he's resting well now and we are anxious to get the surgery done tomorrow.
Thanks again to the Herrins for their visit; Luke really appreciated it.
We were moved out of PICU today and up to the 3rd floor, so he has a nice, quiet room with his own bathroom/tub/shower.
They delivered fish sticks for dinner (no one remembers ordering them) and Luke about lost his breakfast when I opened the lid. Instead, we ordered Round Table pizza for dinner (I didn't know you could have pizza delivered to the hospital), but unfortunately the nausea got the best of him after 1/2 a slice and it turned out about as well as the fish sticks would have.
As always, thank you for all you thoughts and prayers.

KAAL

This morning's update

Well,
We've met with many great Dr's & nurses this morning and here is the latest. The plan is that tomorrow afternoon, Luke will have a blebectomy & pleurodesis on his left lung. The surgeon who is doing the procedure is Dr. Craig Albanese (Division Chief, Pediatric General Surgery). They feel that they may be able to go in through the same entry points as before, creating less scars and scar tissue.
We feel very lucky to have such great care here and we are praying for a successful procedure and a quick recovery.
Luke is resting comfortably and is a little anxious about tomorrow.

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