Friday December 7, 2007

Last night was a long one.  Miss Madeline remained WIDE awake until 5 AM, when she finally ran out of juice.  They gave her enough drugs to drop a horse, but her tolerance is so high, it just did not affect her.  Sleeping all day yesterday didn't do her any favors either.  We are hoping she will be a little more active during the day today, so that by bed time she will actually want to sleep.  I'm sure the night crew would appreciate it!

She has been tolerating the wean off of ECMO.  Presently she is at a flow of 90 cc's/Kg/minute, which is down from the original 150.  A flow of 50 is about as low as she can go before she comes off altogether.  The current plan is to bronch her tomorrow morning to get one last look at her lungs before they trial her off ECMO.  (Of course, once the donor heart shows up tonight, all of this will be moot!)  I'm still proclaiming that today is the day.  - hope God is humored.  In any case, we are directing our prayers that Maddie would successfully separate from ECMO, that her kidneys would resume full function, that she would receive a heart and that God would be glorified through it all.

Okay, so God is probably shaking His head at me right now saying, "When will you ever learn?  My ways are not your ways."  Yeah, I know, but wouldn't it have been really cool if a heart had shown up tonight.  Sort of a name it and claim it thing.  I am not the slightest bit disappointed, because I have every confidence that we will eventually look back on today and say, "It's a good thing that heart didn't come then because . . ."  I am pretty sure that God will provide all things at just the right moment.  In fact I am sure of it.

ECMO was weaned further down to 80, but Maddie did not tolerate it very well and her sats dropped a little bit.  She may need more time for her lungs to heal, or she could still have some cast material down there.  A bronch could be on the schedule for tomorrow.  She has slept 2 of the past 24 hours, and is still wide awake (at 11 PM).  If you read this tonight, please get on your knees and pray for this little girl to sleep.  Her body needs rest in a big way.

Saturday December 8, 2007

Just in case there was any confusion, Maddie did NOT get a heart yesterday.  Oops and oops if yesterday's entry was misleading, but we are still praying hard for one!

If you said a prayer for Maddie to get some sleep last night, praise the Lord, because she did (and still is, as of noon).

The ECMO trial did not go as well as we had hoped.  Her blood pressure stayed up, but her oxygen went down, which is basically what we expected.  That means her heart function is okay, but her lungs are still crummy.  There is nothing else on the agenda for today.  Tomorrow will most likely bring a bronch, but it is doubtful she will come off ECMO this weekend.

Please continue to pray that her lungs will clear, and that as the doctors put their heads together they would arrive at the right decision.

Sunday December 9, 2007

10:00 AM
Maddie slept well again last night.  The plan for the morning is to take a look down her wind pipe with a flexible scope, the results of which will determine whether or not they order a rigid bronchoscopy.  I
'm not sure what we are hoping for.  On the one hand it would be great to find out that her lungs are nice and clear and need no further assistance.  On the other hand, if they are clean then what is causing her to de-sat?  They are wheeling in the equipment right now.  – will update again when it’s over.

(Actually Monday)
My computer picked a terrible time to go on the fritz.  It is limping along, but I will need to do some serious maintenance on it, so if there is no update between now and tomorrow, please forgive me.  If anything huge happens we will try to send something out on the phone tree.  That being said . . . the flexible scope did not show any new casts!  The left side looks really good, but the right side is still pretty bloody.  They may trial her again, but I don't think anyone expects the results to be better.  As each day on ECMO comes and goes, our anxiety builds.  She cannot stay on much longer, so please, please, please pray that her body recovers at least enough to come off ECMO.

Tuesday December 11, 2007

9:00 AM
Madeline continues to stupefy us all.  According to her latest x-ray film her lungs are clear, and by all accounts should allow her to come off of ECMO.  When they trial her off, her blood pressure stays the same, which suggests that her own cardiac output is good.  However, her oxygen drops dramatically and levels off somewhere around 50%, which is too low to sustain her for more than a few minutes.  One possibility is that she could be shunting blood away from her lungs through newly formed collaterals.  In order to confirm or rule out this possibility, they are taking her to the cath lab this morning at 10:30 AM, where they can shoot dye into her blood and trace it’s path.  They will do this on and off ECMO.  If they can repair, or redirect the blood flow she could come back without ECMO.  That would be our greatest hope.  Please join us in prayer for wisdom for the staff.  Pray that the stumbling block to come off ECMO would be discovered, and that it would be easily overcome.

3:00 PM
adeline is still in the cath lab.  We have been given a few updates from time to time, but so far no earth-shattering, “Ah-ha’s.”  It looks like she will probably come back to us on ECMO and in much the same shape as when she left.  The key to that sentence is that she will come back to us.  Praise the Lord.

End of Day
We were hopeful that the cath proce
dure would reveal the smoking gun as to why Maddie drops her sats when she comes off ECMO.  We were even hopeful that they might fix the problem and that she would come back without ECMO.  In the end they ran many tests, but could not isolate any one problem.  As it stands, we are still being told that she is eligible for a heart transplant, but you can tell that it is becoming more questionable.

Wednesday December 12, 2007

Excerpt from "Streams in the Desert":

"Put your hope in God" (Ps. 43:5). Please remember there is never a time when we cannot hope in God, whatever our need or however great our difficulty may be. Even when our situation appears to be impossible, our work is to "hope in God". Our hope will not be in vain, and in the Lord's own timing help will come.
Oh, the hundreds, even the thousands, of times I have found this to be true in the past seventy years and four months of my life! When it seemed impossible for help to come, it did come, for God has His own unlimited resources. In ten thousand different ways, and at ten thousand different times, God's help may come to us.
Our work is to lay our petitions before the Lord, and in childlike simplicity to pour out our hearts before Him, saying, "I do not deserve that You should hear me and answer my requests, but for the sake of my precious Lord Jesus; for His sake, answer my prayer. And give me grace to wait patiently until it pleases You to grant my petition. For I believe You will do it in Your own time and way."
"For I will yet praise Him" (Ps 43:5). More prayer, more exercising of our faith, and more patient waiting leads to blessings- abundant blessings. I have found it to be true many hundreds of times, and therefore I continually say to myself, "Put your hope in God."
~George Muller

Cindy writes:
I don't know about you, but I truly love the above quote. Not only does it come from one of my greatest hero's of the Christian faith, I think it is exactly the road God is leading us down. More prayer, more waiting, more hope, more testing of our faith. Or, as Nancy Guthrie says, this is where the rubber meets the road and where we see if this faith that we give lip service to is strong enough to carry us. I must say that so far in this long long journey, it has sufficed. And if it was sufficient yesterday, it will be sufficient tomorrow. I guess I'm a bit more long winded than Dave. But all of this is basically the lead up to: how's Maddie? And the answer to that is, not great but not without hope. It was shown yesterday that for some strange reason her lungs are not oxygenating her blood right now. The hope is that with a new heart all of these sub-issues will work themselves out. Some are not as optimistic as others, and that's ok, we know they are just looking at the facts. But we are looking at so much more - and so, we wait. The bottom line is, Madeline needs a new heart. The odds of her being able to come off ECMO without it are slim but we also know, "with God, all things are possible." ...and so we wait in hopeful anticipation.

Thursday December 13, 2007

Happy Birthday Cindy!

Friday December 14, 2007

Cindy writes:

Sorry about no update yesterday. As you all may have figured out from some of the messages, it was my birthday and after a long day at the hospital Dave and I went out for dinner and then back to Ronald McD to open cards and presents. Poppa slept at the hospital for us so that we could have the night off - what a blessing (thank you Poppa). I was really hoping for a heart for my birthday, but I guess it was not to be and as we wait on God's perfect timing, we can be ok with that. I would like to thank those of you who sent cards and well wishes yesterday. I was really blessed by the outpouring of love. Thank you for loving our family like you do.

Madeline's day was quiet yesterday. Many times it was discussed to trial her off or change out her circuit, but in the end, it was a day of rest. The talk is maybe today for either of those two things. She has had some problems with her platelet counts lately. The thought is that her body has built up such an immunity it could be "attacking" the incoming platelets. I guess the blood bank is bringing in a "special donor" today that doesn't react to Maddie's immunities. Fascinating that they can do this and we are so grateful to our "special donor" for obliging. Which brings me to this point, in the past many have asked if they could donate blood for Maddie. We never really understood the whole "blood thing" and never really followed through with it. We understand better now. We now know what a blood shortage means to us, to Maddie and to our family. And so now we would like to say, by all means, this Christmas Season if you want to give us a very special gift - please give blood. To just give it to Madeline is a costly thing requiring much testing and such (plus about $100) - but to give it in her name is free. Even if she doesn't get the exact blood that's being given, someone else in our shoes will and it is truly the gift of life. We will update more later after her trial or circuit change.

Friday December 14, 2007

1:15 PM
They are about to trial her off of ECMO in just a few minutes, so if you receive this around 1:15 PM PST please pray. If she comes off, we will be so happy, we will cry.

5:00 PM
It was a long trial, but a really good one. Here’s the deal.
They clamped off the ECMO cannulas.
Her blood pressure did fine (cardiac function okay).
Her blood oxygen saturation dropped steadily for 5 minutes from 90% to 75% (pulmonary function not so good, but a huge improvement from 40% last week).
She did level off at 75% before they resumed ECMO.

The respiratory folks added nitric oxide to her ventilator to dilate the blood vessels in her lungs.
They clamped off the ECMO cannulas.
Her blood pressure did fine again as expected.
Her blood oxygen saturation dropped to 85%, but crept back up to 90%!
The ventilator was pushing 100% oxygen, which is too high to run for any significant amount of time, because it can burn the lungs.
So this oxygen setting was reduced to 95% - Okay.
90% - Okay.
85% - mmmmmmm. Not so great. She crept down to about 80-85%.
The goal setting for the vent is 60%, so we don’t know how low we could have taken her. I also do not know is 85% can be a long-term setting.
They resumed ECMO.

She did not come off today, but that is okay. She trialed much better this time than before, which shows that her lungs are improving. We'll take what we can get. The plan is to trial again tomorrow morning and maybe still come off. Anyway, praise the Lord for a better day!

Saturday December 15, 2007

I thought we had seen and heard it all, but last night they started Madeline on a regular regimen of Viagra.  Yes, the same one.  Of course I had to be educated that the drug was first developed as a vasodilator to control hypertension (high blood pressure).  Only later did the ‘other’ side effect become apparent.  Obviously Maddie is taking it as a means of keeping her blood pressure in check.

There is no plan to trial off today.  The team thinks it is best to wait until Monday morning when every resource is available.  Today and tomorrow will be rest days for Maddie.  She has built up a high tolerance for the sedation meds she normally gets, which means she is awake often.  Of course when she is awake she thrashes around and tries to extubate and de-cannulate herself.  She has already ripped her neck sutures out twice by shaking her head back and forth.  The surgeon just stepped into the room to repair the damage again.  It would really be in her very best interest to sleep until Monday.  Please direct your prayers for rest, (oh and a heart too!)  - a few long awaited pictures . . .

News Special, featuring the Heart Center and Madeline

Alternate TV in the ICU

How does she keep SMILING?! What a Spirit!

Sunday December 16, 2007

7:30 AM
Most of you prayer people are probably in church at this hour, but for you heathens who are reading this . . . (just kidding of course).
The goal was to limp along until Monday, and then try to come off ECMO, but the circuit has become too clogged with clots and fibrin to make it another day.  The new plan is to try to come off today.  They will trial her at some point this morning and if all is well they will remove the cannulas.  If not, they will change out her entire circuit, which we are hoping against, since the inflammatory response from the new tubing will likely set her back at least a couple of days.

She had an okay night of sleep.  Not great, but okay.  Everyone will rest easier once they get the cannulas out.  In case we have been unclear about what the cannuals are and why we get nervous when Maddie shakes her head, here’s a refresher.  Everyone has heard of the jugular vein and the carotid artery right?  If not, put your hand on the right side of your neck and feel those two garden hoses that transport blood back and forth to your brain.  The two ECMO cannulas that stick out from Maddie’s neck are inserted into both of those vessels and extend all the way into her heart.  Basically the cannuals are extensions of these great vessels, so the fact that 10 feet of it is laying exposed on her bed, draped over the crib rail and running through a steel pump makes us nervous to begin with.  Now throw a feisty 3 year-old in the middle of it all!

I am very sad to report that Madeline did not pass her trial this morning.  We were extremely anxious to get her off, and she did manage to hold her own for almost 3 hours, but in the end her sats were low, her CO2 was high and her right lung sounded cruddy.  We have not yet had the official debrief, but wanted to get the word out fast.  We will try to update again later.