Sunday, April 25, 2010

No Movement Yet

Chrissie has not had any movement yet, but there are signs that she has brain function.  Dr. Kupferschmid saw her taking her own breaths between the breaths that the breathing machine (ventilator) forces.  That's a good sign of brain activity.  She also gets crocodile tears when I talk to her or when someone does something she doesn't like (such as suctioning her nose).  Another good sign that Chrissie has brain activity.  Praise the Lord!

Some of you have had questions about the month long possibility of Chrissie's length of waking up.  I'm not sure I have a correct answer, but it appears that while they would hope to see movement sooner rather than later, we still shouldn't give up hope if it takes up to a full month for Chrissie to wake up.  In "normal" circumstances, other pediatric patients on the same paralytic drug tend to show movement within a few hours of removing the drug from their system.  Perhaps because Chrissie was on the drug for 6 full days it may take longer for her to wake.  I'm not sure.

They did another echo of her heart this morning, and it appears that there's a slight improvement in the left ventricle, which is what we want to see.  The left ventricle has been having a really hard time.  Dr. Kupferschmid feels like the right side of Chrissie's heart may be strong enough to do its job on its own now, but the left side still needs outside support from a machine that is similar to the ECMO, but a little safer for her body.  Dr. K is concerned about blain breeds that the ECMO can cause with long-term use.  There's another machine that's very similar to the ECMO, but less risk.  He's going to try to convert Chrissie tomorrow (Monday), so she most likely will come off the ECMO but transferred to a different apparatus that could still be called an ECMO, just a different type of ECMO.  (Apparently she's been on a Rescue Circuit ECMO, and this new machine will not be the rescue circuit machine.)

Dr. K says that infection is a huge risk at this point because Chrissie's chest has been totally open for an entire week.  His plan is to take her back into the OR tomorrow morning (Monday) to somewhat close Chrissie's chest.  He's going to move the cannulas (similar to a catheter tube) from the right side of the heart to the left side, and he'll see if he can secure her broken sternum somewhat and close her chest somewhat.  He will need to have the cannulas poke through the sternum and chest, so he'll sew around those for now, which means at some point he'll have to reopen her chest to get those back out, but for now, he really wants to get her chest closed to help reduce the likelihood of severe infection that could take her life.

The cannulas will be connected to a different external life support device that will work very similarly to the ECMO.  (The ECMO specialist said it could actually be classified as an ECMO machine, just a little bit different set up.)  The new machine that they'll hook Chrissie up to tomorrow will suction blood from her left ventricles (which aren't working properly on their own), circulate the blood through the oxygenator in the machine, then return the blood to her aorta.  So, she'll still have external movement of blood, the same as the ECMO.  She'll remain intubated with the ventilator doing her breathing for an unknown amount of time.  Right now the primary concern is her heart.  Getting her to breathe on her own is of secondary concern at this time.

The hope right now is that Chrissie's heart will function properly.  She's still got a lot of issues with her heart still.  While the hope was to get Chrissie off of external life support for her heart tomorrow, that's not going to happen just yet since her left side of her heart is not doing as well as it needs to be doing in order to not have the cannulas with external life support doing the work of the left side of the heart.  One thing we've seen is that this ECMO machine has allowed Chrissie's heart to rest enough to where her right side is much stronger, but the left side isn't as strong.  It's our  hope and prayer that tomorrow the right side of Chrissie's heart will be able to function properly on its own (once the cannulas are removed from it), and that the cannulas and life support to the left side of the heart will continue to give it rest so it can heal and begin to function properly just as the right side appears to have done.

This morning for a very short while, Chrissie's heart beat on its own with a proper heartbbeat and rhythm!!!  We were praising God for this short glimmer of hope, and we're petitioning Him that He will allow that perfect rhythm to return to Chrissie's heart in His perfect timing.  It will be a glorious day when we see perfect rhythm and function of all 4 chambers of Chrissie's heart!

Chrissie's lungs are a whole separate issue that will be dealt with later.  With her chest being open and being on the ECMO plus a separate ventilator, it's hard to know what exactly the lungs are capable of at this time.  We will know a little more tomorrow as the right side of the heart begins to take over its own function and hopefully begins to pump blood to the lungs on its own.  But the lungs are of secondary concern at this point because they have more time to deal with the lungs, and they can keep her going using the ventilator and oxygen at this point.  It's Chrissie's heart that must begin to function properly and in sync and harmony at this point before they can really even begin to look at her lungs.

They found bacteria in her urine today and yesterday, so they're culturing those to see what antibiotics to use.  They said it's unusual to discover bacteria at this time, so that was another concern that you can pray for.  Chrissie's urine looks like red wine, so it has lots of blood in it, but they believe this is not due to internal bleeding, but something to do with free blood that was 'crushed' during compressions or something like that.  This blood is most likely being eliminated via the kidneys, which makes the urine dark red.  The particles in the blood passing through the kidneys poses another risk to the kidneys, but it is what it is.  Just lots to pray for and more ways for God to show His glory.

The doctors and nurses continue to comment on how finicky and sensitive Chrissie is.  One nurse said she was determined to find the pea under the mattress to help alleviate her crankiness!  Yep, that's our princess. :-)

Another thing to note is that while there have been lots of comments left about their child being on the ECMO machine for weeks and surviving and doing fine now, I feel the need to somewhat explain that Chrissie's need for the ECMO is much more complicated than most children who are put on ECMO.  Most of the time, typical ECMO patients have either respiratory distress OR heart distress.  Chrissie has BOTH.  And both are really severe.  And the heart only has a short time to repair and heal (a matter of days in most cases), while the lungs can have a few weeks.  While Chrissie's heart is showing tiny signs of improvement in some areas, it's not fully healed yet.  That's why full healing of the heart (all ventricles, chambers, etc.) is critical at this time.  The other thing to mention is that most ECMO patients don't have an open chest.  One nurse came in today and was shocked to see that Chrissie's chest is still open!  Chrissie's heart doesn't just have one problem (like a VSD/hole), it has numerous severe problems (arythmia, improper exchange of red and blue blood, a hole, weak ventricles, weak pumping capacities, pulmonary hypertension, extreme stenosis (narrowing) of vital vessels and arteries throughout the pulmonary system, and so much more than I can even list.  So, it's not an easy case to review and give a prognosis.  It's step by step, second by second, day by day baby steps, which will hopefully keep going in the right direction so that one day it will all come together to perform beautifully in sync and harmony with her entire pulmonary system.  Big stuff, but our God is BIGGER than all of this.  He is mighty to save.  He loves Chrissie dearly.  He alone is able to heal Chrissie, and that is why we're all soldiers in His prayer army, petitioning Him to show us His healing hands in a miraculous way.

I've given you tons to pray for, but I know you can handle this massive responsibility.  I trust God's soldiers.  He's really good at equipping the called.  Thank you for obeying His call. 


~ Lisa @ AbidingThere~ said...

praying that during the time God allowed her body to be lifeless, he was resetting her body systems to begin fresh and new, in perfect operating order. Thank you, Father, for allowing us to heap our hope onto you and know that with you all things are possible.

Anonymous said...


gena said...

Still cranking out the prayers in jersey ! I kept Chrissie close to my heart all night long and whispered to our sweet Lord every time I woke.

May I ask if a transplant is a possibility ? I'm sure the doctors know a lot more than me - lol - just curious....

gena in nj

Mom2Six said...

God in heaven above, one of your princesses is in need of your healing hand. Please place your hand upon the cross of her heart and heal her heart, just as you healed the wounds to Christ after he died upon the cross. Chrissy's family needs her for a little while longer here on Earth and we ask that you allow them to experience her joy and constrictor hugs once again.

Shelley said...

Oh Father so so many things for us to pray. And yet, we know that not one of them has come as a surprise to you!!! You knew the mountains that this precious princess would have to climb. We pray, believing, that you are already healing this childs heart and lungs. We rejoice knowing that YOU and YOU ALONE will receive the Glory for her complete healing!!! Thank you Father for the faith seen in her family and in her Doctors. Continue to uphold all of them as they face the challenges ahead. Give them all wisdom and amazing knowledge that goes beyond their abilities. Guide their hands and their minds so that everyone will know the You have again done great and mighty things!!!!
Father, even in the state of coma that little Chrissie is in...we ask that you wrap your arms around her and comfort her and just make it so that she can know in her mind that she is loved beyond words...both by you and by so many many others...not the least of which is her precious Momma and Daddy!!!
Continue to draw together the faithful to go on praying to you for this sweet child!!!
In HIS Mighty name~

Anonymous said...

Sammie & Kenneth

Stacy said...

I have been following your posts for days now. I read them all in tears while praying. I have missed one of the most important parts- is this her original heart? I have prayed and prayed and prayed and will continue to do so. God is going to use her as a testimony- if it is in Heaven or here on Earth- he has a purpose for her. I pray for selfish reasons it is here on earth.

Stacy Anderson

Anne said...

Praying really hard!!!

Pattie said...

Praying for Chrissy here in FL.

Carissa said...

Still praying! What an incredible miracle Chrissie is already!

My grandma was daignosed with primary pulmonary hypertension in 1999. In 2002, she had a heart/double lung transplant. Both right before and right after the surgery, it was minute by minute, just like you said. The docs who did her surgery said that the extensive damage her heart and lungs were in when they replaced them should not have been compatible with life. She is alive today, 8 years 2 months and 12 days post-op and counting!

I am praying for the same miracle for sweet Chrissie. New life, completely healed.

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