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Thursday November 29, 2007
 
Because of you, because of your prayers and encouragement and boldness of heart and steadfast belief in God's eternal faithfulness, we are lifted up, rejuvenated and refreshed.  God has lavished His blessings on our family in ways too numerous to count.  This is painfully obvious by the sheer number of people interceding in prayer on Madeline's behalf.

I have been dwelling on the familiar verse, Matthew 19:26, "With men this is impossible, but with God all things are possible."  It does not say, "Some things are possible."  It does not say, "Most things are possible."  It says, "ALL things . . ."  Even though this passage is in reference to salvation, it applies to every situation where man says, "I cannot," or, "I do not know how."  In these occasions God is magnified all the more when He says, "I can," and, "I will."  With Maddie, the closer we come to the impossible, the faster our own hearts beat.  As much as we don't want to admit it, it is partially fear that is causing this sensation, but just maybe it is also God's spirit moving in us with that much more intensity.

Things may seem low today, but we have every confidence that God will provide a path for Maddie, when no one else can.  My prayers have been stripped down to the very basic uttering of, "I trust you Lord.  I trust you Lord."  By the hour and by the minute we reaffirm our trust in the perfecter of our faith.  Who else, but the creator of all things should we lean on?

If there was ever a kid who wanted to live, it is Madeline.  Her tenacity is astounding.  Her spirit is contagious.  Her light is blinding.  If God chose to reach down and scoop her up, I could not blame Him, for she is pure joy.

I was saving this video as a victory clip to post at her discharge, but I can't hold it back.  We are proclaiming that Madeline will live and live well.

Never Let Go Video

Lungs, Lungs, Lungs - Pray for air.  Nothing is more critical at this moment.  If her lungs do not clear, there is no more plan.  Her tidal volume was 0.0cc/Kg two days ago.  Today they are 1.5.  The goal is minimum 6.0.   - will keep you updated with that number as it rises.

We did find out today that Maddie is an extremely high-risk candidate for a heart transplant and she has just about everything imaginable working against her.  Her transplant doctor said she was in a special group all by herself.  This is nothing that we have not come to expect from Maddie.  Praise God all the more.

Friday November 30, 2007

10:00 AM
We are in the middle of a bronchial scope and are pulling out some really nasty stuff from Maddie’s lungs.  Please pray NOW for the casts and clots to come out and for the bleeding to remain in check.  This is a risky procedure, but a necessary one.
God bless all of you.

11:20 AM
The procedure is over and she is resting.  There were casts in every single branch, but the team was able to extract them.  Her tidal volume is currently 4-5, which is the best we have seen – some real progress!  She will repeat this procedure tomorrow to see what else may have risen to the surface.  We could have seen the bulk of the problem or the tip of the iceberg.  We are hoping for the bulk, because we can’t really go any deeper mechanically.
Turn prayer to praises!!!

End of the day
Cindy & I were pretty much at the bottom of our emotional and physical tanks last night.  Our supper conversation was almost non-existent, and our table prayer was as stale as day-old bread.  Having not seen any great strides in her healing since ECMO, we really needed to jump a hurdle today -- any hurdle.  So we prayed hard that God would give Maddie a little victory today -- any victory.  He answered our prayers big time with her lungs.  Her tidal volume reached 6.2 at the maximum, and has now settled down around 3.  This morning's x-ray showed both lungs completely flattened.  The x-ray taken shortly after the bronch revealed huge pockets of AIR!  Great job on that praying thing.

Tomorrow's prayer should be directed at her lungs again big time, but just before you say amen, mention her kidneys, okay?

Saturday December 1, 2007

10:10 AM
We are just starting the bronch.  Our hope is that we will not see a significant amount of cast re-accumulation.  Pray, pray, pray.

11:45 AM
We are just barely beyond the main airway.  There is a lot of bleeding inside, much more so than yesterday.  There were also numerous casts, but they are smaller and more fragile today.  The hope is that these are casts that have come up from the lower lungs we could not reach yesterday.  They are too thick to suction, but to fragile for forceps.  It is a slow process.  Please pray that the bleeding stops.  So far, things are not looking as well as we had expected, though
I'm not sure anyone had expectations for anything normal.

12:15 PM
It is incredibly exhausting watching Maddie endure this process.  It does not help that her eyes have fallen open either.  The bleeding has slacked off significantly and the gook in the main airway is out.  There is some cast material down below, but nothing like yesterday.  This could be good news, but I can’t really hear what anyone is saying.  – will find out soon enough.  Pray for no residual bleeding and for a good x-ray and tidal volume.  PRAY FOR NO MORE CASTS!!!  He can move mountains.  He can heal lungs.

1:00 PM
The bronch is over and her tidal volume is back up to around 3.  Her x-ray looks pretty clear as well.  She still has some blood oozing in her lungs, but hopefully that will slow down.  The TPA treatment will continue and there will be a third bronch tomorrow.  These are risky procedures, but cleaning out her lungs remains paramount.  There is no reason to believe that the bronch tomorrow will be any easier, but hopefully we are seeing the last of the casts.

Sunday December 2, 2007

9:10 AM
Last night was okay. There seems to be a lot of bloody ooze coming from Maddie’s breathing tube, but this is to be expected. The TPA is continuing to work on loosening and dissolving the casts throughout her bronchia. The team is just starting to bring in the equipment for today’s bronch, and should be rolling by 9:30. The results yesterday were better than the day before and we are hoping that today’s are better still. It would be very good to not have to do this again tomorrow. We am praying with you that today would be one of those awesome God days where the doctors would be shocked and even confounded to see how clear Maddie’s lungs are. We pray that they would remain clear, and that we can move on to the next phase of her recovery. More later . . .

10:00 AM
It took one hour yesterday to remove a massive clot at the bottom of her trachea.  Today, the same clot had formed, but it was removed in just a few minutes.  This clot could very well account for the bulk of Maddie’s low tidal volume.  Her right side below looked pretty clean.  Her left side looks a little worse.  That is where they are concentrating their efforts.  There is quite a bit of bleeding.

12:15 AM
The bronch is over.  With the exception of that first massive clot they pulled out, there were’t a significant amount of casts.  It is unclear as to whether that first clot was a cast of fresh material or a result of stuff that had come up from below.  It was definitely a cast though, and a huge one.  The TPA is being held for the next 24 hours to see if the bleeding will decrease.  It should.  Hopefully by withholding the TPA we do not open the floodgates for more casts.  I don’t think there will be any more activity today.  We are all pretty tired around here.

I probably should have posted this a long time ago, but just in case you were wondering what plastic bronchitis is and what these 'casts' look like, here they are.  These are much more impressive than the ones Maddie has produced, but you get the idea.

Monday December 3, 2007

8:15 AM
Tidal volumes were at 3.5 this morning, a far cry better than the 0.0-0.5 we have been seeing at the start of a day.  With a volume like this and a decent looking x-ray, it is highly unlikely that we will encounter any massive casts in her main airways.  Holding the TPA has brought out the wonderful side-effect of her NOT waking up with a mouthful of blood, but it could be at the cost of not brining up more buried casts.  The rigid bronchoscopy will commence in a few minutes.  – will give updates on what we find.

9:30 AM
The bronch is over, and in record time.  There were a few casts, but nothing major
.  The big news, which was whispered to us on the side by her surgeon, was that she is being listed today for a heart transplant!  We will be consulting with the transplant team this afternoon.  Things are moving so fast, I can scarcely keep up, but we will do our best to keep everyone informed.

Later on . . .
There is far too much information for us to share with everyone about the
heart transplant process, so you will have to research that on your own.  I will say that the average time from listing to receiving a heart is six weeks, with a little over twenty-four hours being the shortest and several months being the longest.  Maddie is still weak and could use a little more healing time to optimize her for surgery, but there is a finite time that she can stay on ECMO.  I asked the team plainly what the best time would be to receive a donor heart.  They replied plainly, "Friday."  It seems like foolishness to me to tell God what our plans are, but I am going to do it anyway.  I am specifically praying for a heart to arrive for Maddie this Friday, and have proclaimed it to a number of Children's finest.  There is a very distinct possibility that my little timeline will be snickered at by the man upstairs.

We understand that in order for Maddie to receive a heart, someone else has to give one up.  A terrible tragedy will happen, but I believe that the tragedy ends and the blessing begins at the same time.  It is a difficult situation to be sure.  Please pray as you are led.

Tuesday December 4, 2007
 
Today started with a
bang . . . or should I say bronch . . . The ENT folks were here nice and early at 7:30 to begin our daily routine.  It was good.  They got down further in her bronchial tubes than ever before and were able to get quite a bit out.  We were encouraged by some good lung title volume when they were finished.  Praise God.
 
We just finished with rounds and the two main focuses of the day are:  1) change out the ECMO system 2) try to optimize her kidney function.  We are now on day 10 of ECMO and the machine is getting a little "long of tooth" which means that is starting to get a little bit more "gummy" and more clots are showing up.  Both of which can be extremely dangerous to Madeline.  It is quite
tenuous to say the least to switch circuits.  I can already begin to feel my anxiety level climbing at the thought of it.  Please pray that it will go smoothly and that Madeline will transition smoothly.  There is usually an "inflammatory response" that happens in the body from the new circuit.  Please pray that Madeline tolerates the change.  As far as the kidney's go, currently they are just barely working.  We desperately need them to kick in.  Madeline needs them desperately.  It really complicates an already complicated issue without them functioning.  Those are our main concerns for the day aside from the obvious fact of Madeline needing a new heart.  Please just know how much we love and appreciate you all for holding us all up during this very long and painful journey.  It will be so good to be beyond it and look back and say, "Wow Lord, look what you've done!"


Thank
you for the team shirts Momo.  They are awesome!

This is a video from a couple of weeks ago, just before Maddie graduated from the ICU for the second time.  It is unbelievable how quickly she got sick again.  The Mad-a-teers make us play it  five times a day.  Enjoy.

Wednesday December 5, 2007
 
Several months ago Cindy coined the phrase, "Home by Hanukkah," which we laughed at, because it was so far out in the future, we just knew in the back of our minds that there was no way we would be here that long.  Well . . .

Sorry for the late update, but Poppa stayed with Maddie last night, so Cindy & I could get away from the hospital for the night.  Here's the catch up.  The ECMO circuit change came off without a hitch and has resulted in a minimal inflammatory response.  Based on tidal volumes between 5 & 7 and a decent x-ray picture, she was able to forego the bronchoscopy.  She is currently being weaned on her ECMO and ventilator settings and is expected to come off ECMO altogether in the next few days.  Also, her urine output has increased slightly.  More later on the Thursday entry!

Thursday December 6, 2007

Today was a day of rest for Maddie. She started the day without the need for a bronchoscopy again, as her x-ray and tidal volumes have continued to improve. She was given a hefty dose of diuretics which kicked her kidneys into high gear, producing some serious pee pee. She slept for a good part of the day, and then woke around 5 PM, ready for play time. For a kid on life support, she is pretty amazing. She cannot speak, but she can certainly interact, and she did for several hours. However, by 10 PM she had not slowed down. Her happy, interactive mood turned into bizarre behavior. Her eyes were wild and wide open and we are pretty sure she was hallucinating. The poor thing looked genuinely frightened, despite our efforts to calm her. Finally, we had no choice but to give her some heavy sedation to basically knock her out. I don’t know how long it will last, so I am signing off now to catch a few winks while I can. It could be a long night.

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