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Tuesday November 20, 2007
 
Cindy found this appropriate verse to start the day:

"Blessed is he who waits."
Daniel 12:12

Okay, here's the new deal.  The plug we put in the g-tube site is holding, for the most part.  Madeline did not make the surgical schedule for today, but she won't have to wait until next week either.  We will not be going home this week, but will stay put until Friday morning when she will have her gastronomy closure performed.  She will probably be on some form of IV antibiotic over the weekend.  If all goes well, we could be discharged to the Ronald McDonald House next Monday, and then home by mid-week.

Thursday November 22, 2007 - Thanksgiving
 
I hope all of you faithful prayer warriors had an awesome Thanksgiving.  Madeline made history by receiving a four-hour freedom pass, which allowed her to break the bonds of Children's Hospital and go pretty much anywhere she wanted to.  I was tempted to hop on the freeway and drive in one direction for two solid hours, just to go as far away as we could, but decided instead to take a leisurely cruise and make a few choice stops, including the Ronald McDonald House.  It was an unimaginable joy to cross the threshold of the hospital boundary, and even though we did not make it home for Thanksgiving, we at least proved to Maddie that the universe does not end at the purple hippopotamus next to the fountain at the hospital entrance!

Friday November 23, 2007
 
Cindy writes:

So today was the big day.  The day that the G-tube nemesis was to be finally behind us.  Madeline was scheduled for surgery this morning at 9... no at 10... well, then there was the emergency that came up before hers so it bumped to 11.... which actually meant she went in at 12:15.  No problem.  They said it should be pretty short and sweet (therefore we really didn't think to do a "forewarning email").  But alas, as we should truly know by now, this is Madeline. 

The one hour surgery ended up being close to 4 hours.  Needless to say we were getting a wee bit anxious by that point.  When we did finally get to meet with the doctor they told us that the surgery itself went well (and that it was probably a good thing that we opted for it because there was some fusion that had occurred between her liver, her stomach and her abdominal wall).  However, she had some problems coming out of anesthesia - like her SATs dropped into the 30-50 range.  They did an emergency x-ray that showed that her good lung had clouded up at some point.  They re-intubated her and tried suctioning a couple of times.  During the last time she coughed and they found on the end of the endotracheal tube a big mucus plug (this is where it gets really gross - esp. when Dave ends up posting a picture of it!).  They kept the "specimen" and it has now been determined that Madeline has what is called "plastic bronchitis."  I'm barely understanding what it means, but apparently that "plug" was a perfect cast of her bronchial tube in her left lung.  They say it's fairly rare but when they do see it it is almost always in a post-fontan kid.  Figures!  That's our little girl!  Never one to do things the easy way!

So now what?  We are back in the ICU and Maddie is intubated once again.  We're hoping that they'll be able to extubate once she's more awake and able to breath more cognitively.  Hopefully in the next few hours this will happen.  Hopefully this will not be too much of a set back.  Ahhhhhh, to just rest in God's perfect timing . . . how it stretches us so!

Side note:  I was given the most wonderful book the other day and it was so good I read it in a day (thank you Sue)!  It's called "Brokenness:  How God Redeems Pain and Suffering" by Lon Solomon.  Wow!  I would say a definite "must read" for every Christian!  Ok, enough of my shameless plugs...but really, what a powerful book!

Later that night . . .

Cindy reminded me of a famous phrase: "If you want to see if God has a sense of humor, just tell Him your plans!"  Too true, when I think back a week ago about how we were taking Maddie home last week.

She was extubated this evening, but is still severely congested.  Her sats are around 90%, but she is back on 4 liters of oxygen, which is a significant jump from none.  The expectation is for her lungs to clear over the next 24 hours and move back out of the ICU ASAP.

Sunday November 25, 2007

"Be still and know that I am God."
Ps 46:10

Cindy writes:
 
Forgive us for not updating sooner.  For those of you on the "Subscription List", you already know what the last 24 hours have held.  For those of you who aren't, it will be hard to summarize the last 2 days.  Needless to say, we once again have been through every parent's worst nightmare. 
 
Friday night, after our last post things here continued to deteriorate.  By about 2 a.m. Madeline once again went into cardiac arrest - though praise God this time it only took 5 minutes to regain her heart rate (verses the 2 hours from last time).  As the night went on her carbon dioxide levels continued to rise (which is "poisonous" to her system) and her body was working harder and the decision was made to once again place her on ECMO.  They were thankfully successful (and again we praise God that last time they were able to preserve her vessels from the ECMO cannulas because they were able to use the same veins again). This morning the ENT doctor came back in to check her lungs to see if there were any more "castes" in the bronchial tubes - and yes they are unfortunately still there.  So here lies the dilemma:  how do we get them out?  will they re-accumulate?  can she come off ECMO with them?  The only answer we've gotten so far is that no, they don't think she could come off without them being removed.  Everything else is a big question mark.  There's a lot of frightful talk milling around right now and I just finished meeting with the "transplant doctor" because that is unfortunately one of the very real possibilities that they now have on the table. I just can't even put into words the heaviness that our hearts hold right now.  The disappointment is beyond words.  The thought that tomorrow was to be our discharge day has now become a pipe-dream and it's devastating.  Even worse though is the thought that once again our precious Madeline is fighting for her life with all the cards stacked against her - except for one and He is the almighty King of Hearts!  And so as desperate as Madeline's plight may seem, please join us in prayer that we may not focus on the on the "how things appear" but on the One who holds it all together.  Her odds are not good, but by His grace she has beat the odds before.  May it be His will that He will once again sustain her, and that she will be healed. 
 
Tomorrow the doctor team will gather and discuss her case.  Because this Plastic Bronchitis is so rare, there's very little they know about it.  They don't really know what causes it or how to cure it.  Tomorrow they will be reaching across the country to try to find out anyone and everyone that can add input to the dialog.  Please pray that there is a meeting of the minds and for their wisdom for us to know just how to proceed.  God says we can ask of Him and ask freely.  My friend Anne asked me what would be our ideal for Madeline and I told her that ideally it would be that they were able to successfully remove these castes and that they would NOT re-accumulate and that Madeline would be able to successfully come off ECMO without having to go down some of these other routes.  I know that as a parent I don't mind my kids asking me for things (unless it's repeatedly in a really irritating whining kind of way) and that as their loving mother I will give in to those things that are good for them and in their best interest.  Therefore, I see my heavenly Father in the same way.  We are free to ask and ultimately He knows what's in our best interest - and sometimes that's even saying "no".  But we can ask.  Please join us in asking.  Please join us in praising Him for all that He has done so far.  Our hearts break for our baby girl.  She was just so close to going home.  Every time we would watch Clifford and see the Chuck E. Cheese commercial her first words were "Poppa's taking me to Chuck E. Cheese when I get outta here" - and we would tell her "soon baby girl, very soon".  Yes, our hearts are broken.  Ahhhh, if only love and affection could heal her she'd be up and skipping by this time.  Not only the love of our friends and family, but the love of those here at the hospital.  There's no doubt in our minds that everyone here would move heaven and earth to heal her if they could.  But as it stands, it seems as if there is only one who has that power.

"Those who sow with tears will reap with songs of joy."
Ps 126:5

Monday November 26, 2007

11:00 AM
The ENT team is about to start a rigid bronchoscope to try and remove the casts in Maddie’s lungs by suction. The eminent risk for any procedure while on ECMO is bleeding. If the bronchoscope nicks her trachea, she could bleed and possibly be unable to stop. The hope is that they will encounter only a few casts and once removed, her lungs would inflate. The other possibility is that they would encounter massive amounts of casts to the depths of her bronchial tree. They would still attempt to remove these, but at a greater risk of bleeding.

12:10 PM
The bronchoscope was very productive. Unfortunately they found lots of casts. Fortunately they were able to get everything they saw without any significant bleeding. In a couple of days the doctor will come back and take another look to see if the casts have returned. In the meantime the RT will attempt to puff a little air into her lungs and see what happens.

There is a two part problem that needs a two part solution. Part one is to clean up her lungs presently to get her off of ECMO. Part two is to treat the underlying cause of the plastic bronchitis. If the underlying cause is her Fontan circuit, she may be looking at a heart transplant. I hope that is not the case.

10:45 PM
Since the day Madeline was diagnoses with HLHS we pretty much knew what her course would be.  She has been a difficult case in every stage, but at least we had the hope of being "Done" for a while.  We have always said, "Norwood, Glenn, Fontan, and then maybe a heart transplant in her early teens to late twenties."  What a great feeling it was last week to be at the end of her Fontan.  - ready to go home and enjoy normal life for a couple of decades.  Sadly, that will not be the case for our beautiful daughter.  The topic of heart transplant as one of many alternatives has become the only alternative.  No one can say what the precise cause of the casts that have spontaneously formed in Maddie's lungs is, but it is clear that they are a product of her Fontan circuit.  When she comes off of ECMO there is every reason to believe that the casts will return.

Today has been perhaps the hardest for me to swallow, because I always knew the plan, and now that plan is gone.  Today we closed the book on the three-stage procedure we started three and a half years ago.  Tomorrow begins a new chapter of the story of Maddie's heart transplant.  There are still many obstacles to overcome before she is even eligible for a heart, so tomorrow we will focus on her lungs.  She must come off ECMO to move forward and she must use her lungs to come off ECMO.  She has two lungs, so take your pick for prayer.

Tuesday November 27, 2007

I cannot remember which details we posted already, so forgive me if I repeat a few.  The current plan is to remove the casts from her lungs so she can move air again and get off of ECMO.  After that ASAP they will take her to the cath lab and fenestrate her heart to reduce the pressure in her venous system, thereby (hopefully) preventing the casts from reforming.  She will then be listed on the heart donor recipient list, where we will wait patiently for a heart to transplant.

The TPA therapy was started today.  Basically the TPA solution is introduced through the ET tube as a mist, while the ventilator is set to high pressure to try and 'push' the TPA through the bronchi to the casts.  The TPA is supposed to partially dissolve and dislodge the casts so that they can be suctioned out.  The treatment started at 3 PM and as of 10 PM there are some faint signs of progress.  We should know more tomorrow.  I'll be praying specifically for her lungs to eject all of the casts and fill up once again with air.  She also needs prayer for her kidneys (again).  Her kidneys get injured anytime she has surgery.

Wednesday November 28, 2007
 
"Nothing is impossible with God". Luke 1:37

 
Excerpt from Streams in the Desert:
 
"... Oh how we love to see impossible things accomplished!  And so does God.
  
    Therefore may we continue to persevere, for even if we took our circumstances and cast all the darkness of human doubt upon them and then hastily piled as many difficulties together as we could find against God's divine work, we could never move beyond the blessedness of His miracle-working power.  May we place our faith completely in Him, for He is the God of the impossible."
 
As this day begins there is some good and some bad.  The good is that we began TPA treatments yesterday and last night they began to produce some of the casts from Maddie's lungs.  The bad is that it has also begun to produce some internal bleeding in her lungs as well.  The good is that her lungs were showing some signs of expansion yesterday.  The bad is that she is so fluid positive (5 liters at this point) that there's no room for her lungs to really begin to expand anymore.  The good is she is having some urine output, the bad is it is just not enough to keep up with what's coming in.  She will definitely need to go back on dialysis and soon.
 
We met with a bunch of different people throughout the day yesterday about transplant and we are moving forward.  They've begun doing her pre-testing.  She is an O blood type which works somewhat against her because she can then only receive a heart from an O donor (which takes away about 50% of potentials).  She has also revealed in some of her pre-tests that her body has developed some immunity from all of the transfusions she's received over the years, that also begins to limit her.  All this said there is also just the knowledge that for our prayers to be answered requires the life of another.  I appreciate what Dr. Baden said in that transplant is taking an awful tragedy and using it for good.  But it still leaves our hearts heavy in the knowledge of what it requires from another.  Bottom line is may our God be glorified in both life and death.

This is a little video that was shot two weeks ago that the nurses around here just love.  It is a far cry from where she is today, but she'll get back there.  Thanks Jesse!

 

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