The Plan

So what’s the plan anyways?  I mentioned that we leave February 26, have some appointments the next couple of days, then surgery on March 1. Hopefully home on March 5.  I may be a little optimistic on the scheduling, as this will be the shortest trip we have made yet, but I am hopeful.  I have a feeling we will have to go up two more times in the next 6 months like last time, but we’ll see what they say based on what they find.  We had a video conference with the Neuro-radiologist that will be doing Jacob’s cerebral angiogram, or the procedure to map the lesion in his brain.  He assured us that this is a routine procedure for him, that carries minimal risk.  He will not attempt any treatment on this lesion at this time, the only goal is identification of the lesion, and mapping its extent.  He told us that if it is an arterio-venous or A-V malformation, that it will require treatment.  These lesions are high flow, and carry high risk of complication.  That is, you could predict that if left untreated, this lesion would have a problem (think stroke or aneurism), that would have catastrophic effects on his brain.  If it is found to be an AVM, he will take the images to the Cerebral Vascular Team for evaluation, and they will come up with a treatment plan.  Treatment of these lesions is more complex than the treatment he undergoes for the lesion in his chest, though.  The options with those, we don't really want to explore unless we get confirmation that it is a AVM.  If the lesion is a true Venous (only) Malformation, we will not treat it.  He was very honest with us, that Venous Malformations of the brain are exceedingly rare, even amongst people with BRBNS.  He has studied these lesions, and is actually getting ready to publish the very first piece of literature on this particular type.  They know that these lesions are low flow lesions, so they think the risk of a catastrophic bleed is very unlikely.  They cannot say for sure that nothing will ever happen with this lesion, but the risk of going after it is higher than the risk of complication from leaving it alone.  They also have found that Venous Malformations of the brain are usually part of the venous drainage system of the brain, and thus really cannot be removed or altered, without risking the integrity of the brain’s blood flow.  So we really will have no choice but to leave it alone and hope it never is an issue.  He will know immediately during the procedure which one we are dealing with, so we will know right away the results.  We are hoping and praying for a Venous Malformation, as even all the unknowns with this are less scary than the known risks of an AVM and the risks of their treatment.  I feel good, (well as good as is possible), about this, and about the expertise of the physician.  He is one of the best in the world, and was very honest and forthcoming with us.  I am also thankful for the safety in a team of specialists coming up with the best plan based on what is found, rather than just one person on the spot.   I am very nervous about this procedure, though, despite his assurances of its routine nature.  I guess I got a little taste of what I dish out. I routinely place invasive central lines in my job.  Catheters the size of a thread, go into a vein or artery, and I thread them into large vessels just outside of someone’s baby’s heart.  I get consents, and answer questions, at times even internally amused at the hesitation I often see in the parent’s eyes.  "Yes, I know your baby is only a pound.  Yes we do this all of the time."  Now here I am on the other side of the table.  Here is this man in front of me, telling me how routine it is to thread a catheter into my child’s femoral artery, all the way up, through his carotid, and into his brain, and further, right into this mysterious lesion.  "But don’t worry, I do this all of the time."  It’s laughable.  Humbling, really.  It's very different on this side of the table, when it's my baby we're talking about.  I suspect that I will be more understanding of the fear I see when talking to parents at work about PICC lines or Umbilical arterial or venous lines.  

Back to the procedures…before the angiogram, our regular Interventional Radiologist who treated Jacob three times in 2014, will do a sclerotherapy procedure on the lesion in his chest and back.  We won’t know the true extent of how much growth has occurred until then.  They will attempt to shrink this lesion as before, but its size will likely require more than one treatment.  We will see.  Once they are done, the Neuro IR will do the cerebral angiogram.  They will share anesthesia, that is, tag off, so he will only have to be put under once, and both procedures will be done in the same day.  I am very thankful for this.  They will keep him under for longer afterwards, as he needs to lie still on his back for 4 hours after the angiogram.  He has a great deal of pain after the sclero treatments, so I am thankful that he will sleep through more of the immediate aftermath than he normally does.  Depending how he does postop, he will stay in the hospital for 1-3 days afterwards, leaving us a couple more recovery days before we fly home.  All of the details are falling into place, and we even got our first insurance approval yesterday!  This was a first, their approving it at the first request... usually they deny, and then we start the back and forth fighting until they concede and approve.  This is a huge relief off my shoulders.  

Two weeks from today we leave.  I am up and down, but have peace with the plan.  I find myself clinging to Jacob more of late; as I often do, when I'm feeling uneasy about his health and unsteady about my own state.  Please continue to pray for my baby.