Wednesday, March 30, 2011

MRI details

Long day today.  Keegan had an MRI and MRA of his brain performed around noon.  He handled anesthesia well and came back up to the room around 2pm, only to be shuttled back off for an echo and bubble study of his heart about 30 minutes later.  He ended up not needing the bubble study because the hole in his heart was clearly obvious on the echo performed first.  Here's what we found out late this evening.

Keegan had a mini-stroke yesterday, a transient ischemic attack, to be precise where an air bubble, not a blood clot, made it's way to his brain, temporarily shutting off oxygen and blood to the part that controlled his left side.  (We believe that his entire left side was actually affected by this event, but we didn't ever stand him up during the episode to know for sure.)  The air bubble then moved on to a more minor area of his brain, where we saw it on the MRI results today.  The neurologists believe that the air bubble will eventually be absorbed by his blood stream, and he shouldn't need further intervention to resolve it.  They don't anticipate that he will have any long-term effects from this event.  However, it does indicate a bigger problem, namely how that air bubble made it to his brain.

I don't have this all down 100%, but this is my understanding so far.  As I mentioned yesterday, we have known since transplant that Keegan's donor heart had a patent foramen ovale (a small, intermittent hole between the atria of his heart).  It usually is not a problem; in fact, almost 30% of the American population has some form of a PFO without ever knowing it.  The main complication of a PFO is a much higher risk of strokes.  We believe that at some point yesterday, an air bubble was accidently injected into Keegan's port while we were trying to save his line.  His port is venous access into the side of the heart that pumps out to the lungs, so in a normal heart structure, this bubble should have gone to the lungs, creating a pulmonary embolism.  But in a perfect storm of events, the PFO hole allowed that air bubble to cross to the other side of his heart, where it was pumped out to his brain. 

God absolutely, positively has His hand on Keegan.  That's the only explanation as to how this large air bubble by-passed the more critical parts of his brain without causing permanent damage.  The bigger question now is what to do to prevent this from happening again.  Obviously, if he didn't need central access, the PFO would not generally be a threat to him.  Since we know that he will need long-term central access for IV nutrition, infusions, and blood for the foreseeable future, the PFO presents a very large risk of this happening again - whether with air, a clot forming on the port sheath and breaking off, a build-up of TPN or lipids breaking off, or a clot from coronary artery disease.  (I have mentioned before that the grafts where Keegan's new heart was patched to his old arteries are extremely prone to plaque build-up.  Heart attacks are the leading cause of death in a heart transplant patient this far out, but strokes are another huge risk.  Keegan's stroke risk is now exponentially higher with the PFO open.)

Tomorrow, neurology and cardiology will consult with each other and with the cardiothoracic surgery about the necessity for and logistics of closing the PFO via surgery.  We anticipate that this can be achieved through a heart catheterization, rather than open heart surgery.  Generally, PFO closures are performed on adults, so we are primarily concerned with determining whether Keegan is even big enough to have this stent procedure. 

All of that would be something we should otherwise be able to do on an outpatient basis.  Except that Keegan spiked a high fever late this afternoon.  Blood cultures were drawn and now the 48-hour minimum waiting period begins.  If the cultures stay clear, we should be able to go home by late Friday evening, unless the heart cath could be squeezed into the schedule faster inpatient.  If it grows back with a line infection, it will be a week or more of inpatient treatment.  Obviously, any surgeries would be delayed until after an infection is cleared.  But honestly, we desperately need them to come back negative. 

I don't know about you, but my heart and my head are about ready to explode.  Why must my beautiful little boy have to go through such trials?  Gray and I feel extremely blessed that this was addressed quickly, that we have an answer, and that Keegan is ok.  But other than that, we are defeated.  I have no more words left to describe what our family is going through tonight.  I just ask that you join us in prayer for Keegan's strength, safety, healing, and courage.  There is nothing more I could possibly ask of you.  Thank you so much.


Becky Cudlipp said...

I hardly know what to say. I can't believe you are going through this. I can't even begin to imagine how frustrated, sad, and exhausted you all are. You are all still in my prayers and will continue to be.

Courtney Keys said...

Maddie, this is Courtney Alieksaites from Ursuline. I found your blog from Lauren's Facebook page and I just wanted to drop you and your beautiful family a note to say you are all in my thoughts. I am in awe of your strength and courage. I spent hours reading the blog the other day and Keegan's story is just amazing. Keep strong and know that I am thinking of you all and wishing for the best.

Susy said...

You all have been on my mind constantly. I'm praying that some of this burden be lifted from you...honestly, I would take some of it if I could. It's not fair that your sweet little family has to endure all of this, and that life has to be a constant battle for Keegan. I'm praying for relief, I'm praying for strength, and I'm praying for God's wisdom for the doctors working on Keegan.

Stacie said...

Sending all my love and lots of prayers. May God's healing hand be obvious to all who work with Keegan. And may God grant wisdom to you and Gray and all of the doctors that are working to help Keegan. Thank you for the update.

Much love,
Stacie Smith

Julie said...

Maddie I am so sorry you all are having to go through so much right now. Praying for strength, healing, courage and wisdom for you all. Keegan is a fighter. Hang in there, many prayers are being said for you.


Jamie said...

Hi Maddie: I work with Greek InterVarsity Christian Fellowship at UPenn...Lauren Albert has asked us to pray for Keegan and your family. I've read some of your blog and I am astounded by your little man's strength and good spirit. May the Lord bless you and keep you and make His face to shine upon you and your family as you seek healing for your sweet baby boy. ~Jamie Hawthorn