Bennett has had a stable day, and the nurses and doctors are pleased with his current condition overall.  It hasn't gotten worse, but it hasn't gotten much better either.  But that's ok.   He's hanging in there pretty strong to have been on ECMO for 16 days (average is 5-7 days).  His system is still adjusting to trying to work on its own, but so far he's still holding as best he can.

The concern continues to be the heart and lungs, but now with more emphasis on the lungs.  His heart is reacting favorably so far, so they are pleased with this.  But there remains a pocket of fluid/infection on both the right and left sides of his lungs.  At this point the doctors would rather not ask the surgeons to come and remove the infection surgically (even though it's much less of a risk because he's no longer on heparin), but it remains an option at this point.  I think they will make their decision on the surgery within the next day or two.  The other option is to hope his lungs continue to strengthen and expand and push the infection out.   

His oxygen levels remain ok - he had one bad reading this afternoon, but all the other readings were better.  He continues to urinate well, he's clotting much better since he's off the heparin, and he's becoming pretty active (his eyes are WIDE open and his arms and legs are beginning to move and kick around some).  The ventilator setting is around 32, which is about what it was yesterday.  We want this setting to be able to come down into the teens (this means his lungs are doing the majority of the work). 

So, since this morning there really hasn't been much of a change.  He is still critically ill, but things are definitely better now than they were yesterday.  His little lungs are still the main issue right now.  We need them to expand and strengthen and start acting like lungs, and we need this infection to take a hike!  He continues to fight and the staff continues to be amazed at his strength. 

Thank you all for your prayers and for your love.  We ask that they please continue for our precious son, particularly for his lungs.  Tomorrow we hope to take a few pictures of those WIDE open eyes.

Love,

Travis, Kelly, and Bennett 

Good morning, all.  I spoke with the nurse just before shift change, and she said that Bennett actually had a pretty decent night.  His flow came down to .3 (from .37 last night and .5 yesterday morning), so that's a positive sign.  We need him down to .1 or .2 on the bypass machine before they will consider trying to take him off ECMO, so please continue your prayers that the flow will drop.  The chest tubes continue to ooze blood out the sides and through the tubes, so they gave him a good amount of blood and platelets during the night.  However, the fact that his flow still came down to .3 prompted the nurse to tell me that something "interesting" was happening. 

Also, the bleeding around the neck is still contained for now.  The surgeon felt that this would hold for a day or so at the most when he stitched it up Tuesday evening, but so far it's still holding strong.  The nurse didn't know the plan for the day, so after the doctors make their morning rounds and meet with the surgeons, I will give another update.  I'm certain another chest x-ray will be performed this morning, so we're pretty anxious to see how that looks. 

We're so thankful that the flow has decreased (even a little) and the bleeding for the most part is contained a bit more.  These remain the two biggest issues right now - that his lungs will continue to get stronger and for his oxygen levels to increase (thus allowing the staff to reduce the flow settings on the bypass machine), and for the bleeding to stop. 

Thank you all for your love and concern for Bennett.  He continues to fight and refuses to give up.  In just two and a half weeks, he has taught his parents so much.

Love,

Travis, Kelly, and Bennett 

The latest chest x-ray shows a little improvement, but nothing very significant.  The surgeons came up a few minutes ago to look at Bennett, and as of now they prefer not to perform the extra surgery to clear his lungs.  They just don't feel that he is stable enough at this point to endure a true surgery.  He feels that we're in between a rock and a hard place at the moment - they want to help remove the infection, but because of the potential for bleeding he wants to wait a little longer.  He only wants to do the surgery if there is no other alternative to clearing the lungs. 

The doctors and surgeons will be meeting later this afternoon to discuss the different options and make a decision as to which one they want to go with.  At this point, the plan seems to be to wait a little longer to see if Bennett's lungs can improve any more, and if surgery is required then to do it at some point tomorrow.  If any of this changes I'll be sure to let you know. 

He continues to bleed from the chest tubes, and so they are giving him blood and platelets to help with this.  His flow has increased again to .5, but it will hopefully come down after the new blood has gone through the system. 

There's much to report, but the main things to be in prayer about continue to be for the bleeding to stop and for his lungs to heal as quickly as possible.  The surgical option is not one we want to go with if he is still on ECMO, but depending on how Bennett does today, it may be our only option to finally clear his lungs.

Again, thank you all for your love and prayers for our baby boy, as well as for us.  We ask that they please continue. 

Love,

Travis, Kelly, and Bennett   

Travis and I just met with our doctor and we are at a crucial point with Bennett.  Surgery needs to take place to remove the nasty mass of infection that is preventing Bennett's lungs from inflating to full capacity.  The doctors have decided to test his lungs with the ventilator to see if they are strong enough to come off the bypass machine.  The doctors and surgeon would ideally like to have him off the bypass machine (and blood thinner) before performing surgery to remove the jello-like infection that is currently sitting between his lung and rib-cage and is preventing his lungs from fully inflating. 

If Bennett's lungs can perform on their own with the assistance of the ventilator, the bypass machine will be weaned, the blood thinner will stop being given, and the surgery will take place.  If Bennett's lungs cannot perform on their own, he will remain on the bypass machine for the surgery, but there is a large risk of uncontrollable bleeding due to the blood thinner that must be given to support the bypass machine.

Please pray that Bennett's lungs are strong enough to support themselves with the ventilator so that the bypass machine can be weaned.  We know that God is able to do this, so we boldly beg for this.

We will update later tonight after the doctors have monitored Bennett's lung ability and have met with the surgeon to determine the course of action for surgery.

Thank you so much for your prayers and love shown our angel boy.  He is precious beyond words.

Love,

Kelly, Travis & Bennett

Family and friends, I know we've said this before, but now is the most crucial "hour" for our precious boy.  The next several hours and throughout the night will determine many things. 

We just met with the wonderful team of doctors again.  His lungs have responded better than they thought they would to being temporarily taken off ECMO.  The lungs haven't responded anywhere near perfect of course, for they are still too weak.  But the lungs did respond, so the decision has just been made to remove Bennett permanently from ECMO.  There were a few other reasons why they wanted to take him off ECMO, including the fact that the machine had a major clot in it, but the main ones are because his lungs are functioning a little better now and to reduce his bleeding.  Once he is off ECMO, he cannot return.  This will significantly reduce and/or eliminate his bleeding, but it will also significantly reduce the assistance he was receiving.  It's now entirely up to his lungs and heart. 

So, can you see where we need prayers right now?  Two main organs:  his lungs and his heart.  They now have to carry the burden of sustaining him, so please pray for the strength of his lungs and his heart.  His heart is also of major concern because it now has to start acting like, well, a heart.  But his heart has been hibernating over two weeks, so there is significant concern about how his heart will respond to the "shock" of having to work again.  They will be giving his heart several drugs and steroids soon to try to kick it in gear.

The surgery option right now is still just an option.  If his lungs continue to expand and strengthen, then surgery may not be needed.  This would be ideal.  But even if surgery is performed, the risks are much lower now because the heparin and excessive bleeding should no longer be issues.  As you can imagine, so much is happening right now, and it's happening very quickly.  Essentially what it boils down to is the healthy functioning of the lungs and the heart. 

Before the doctors re-entered the NICU to head over to Bennett, we told them that we and several hundred people around the country are praying for them and for Bennett.  They thanked us for that, and reminded us that faith is essential during times like this because their expertise can only go so far.  Your prayers are sustaining us, the incredible medical staff here, and our precious son, and we ask that you once again join us in prayers for the doctors and for Bennett's lungs and heart.  His has fought like a warrior, but his strength will be tested now more than ever.

We will most likely be here for the majority of the night, and as more updates become available we will let you know.  As always, thank you for all your love and support. 

Love,

Travis, Kelly, and Bennett

Your comments and prayers have always meant so much to us, but especially so today.  Thank you all for your continued love and support.  I just spoke with the nurses and doctors, and the latest on Bennett is the following:

His latest chest x-rays show definite improvement in the lungs (some of the fluid/infection is now gone), so the chest tubes have done a good job.  However, there continues to be a significant amount of bleeding on his left side around the chest tube.  While the chest tubes have been able to remove a good portion of the infection, there is still more that remains, particularly on the right side.  The bleeding on the right side is not as bad, and the bleeding around the neck has held off so far, so these are both positives. 

The plan for now is to wait another day or two to allow the chest tubes, albuterol treatments, and antibiotics to continue to do all they can to remove the fluid/infection from his lungs.  The last step after this would be another surgery to suction out the infection, a very invasive procedure that the surgeons will perform only if they have to.

The nurses told me that what's most important right now is for his bleeding to stop, or at least to slow significantly.  He is much more pale today, but they will be giving him more blood and platelets as the night continues, and so his color will probably come back a little.  Please continue your prayers for his bleeding to stop and for his body to clot.    

We love our boy, and I know each of you love him too.  If there is another update tonight, we will let you know.  Hopefully the website won't crash again!

Love,

Travis, Kelly, and Bennett

I just got off the phone with Kelly who's at the NICU now.  Basically, the bleeding in his neck is still the main concern right now.  The surgeons haven't been able to get up to see him yet, but the plan is for everyone (nurses, attending physicians, surgeons) to meet this afternoon and develop a plan to control the bleeding and help Bennett move forward.  They are keeping him very sedated at the moment because they don't want him moving at all.  They want him as still as possible.

His bypass flow is back up to .44 (up from .40 this morning), so that's a little disappointing, but it's also not terribly uncommon.  His latest chest x-rays showed no real difference from yesterday, so they may consider stopping or reducing the albuterol treatments soon.  Also, there is a pocket of infection that refuses to go away on his right side, so the doctors think that the best thing to do will be to insert a chest tube to remove this infection.  There are risks to this procedure, but at this point it is the best option to help Bennett get off ECMO. 

However, he continues to urinate well and his oxygen levels remain in the 60's, so these are still good signs. 

Please continue your prayers for Bennett, and also for wisdom and guidance for the medical team to choose the right approach to control (and hopefully stop) his bleeding, remove the infection, and help him move forward.    

Thank you all for your prayers and concerns for "our" boy.

Love,

Travis, Kelly, and Bennett