Tuesday, July 31, 2012

Good News

Got very encouraging news from the ENT today. Right now it looks like we're going to be scheduled for major airway surgery on Aug 28, but we're waiting to get the anesthesiologist on board since it's not a day that Dr. McClay is typically in the OR. I think everything will be confirmed later this afternoon or by tomorrow.

Tuesday, July 10, 2012

New Territory

Thank you everyone for your prayers as Luke went into the operating room at Children’s Medical Center for yet another bronchoscopy today.  We arrived at the hospital at 10:45 this morning, and the nurse carried him back to the OR at 1:30.  Unfortunately, Luke has reached the age that he is beginning to associate fear and pain with people in scrubs.  Not even the “goofy juice” (Versed) helped this time.  He was very scared and cried as they carried him away from us.  I cried too, but managed to hold it together until Luke turned the corner out of sight.
Luke was only in the OR for about 30 minutes.  One prayer was answered right away.   The anesthesiologist was able to get an IV on the first try, despite Luke’s last fluid intake being over five hours before they took him back.  We were very surprised to be called to the conference room only 30 minutes after Luke left us. 
The information we got from Dr. McClay has given us mixed feelings.  He showed us pictures of Luke’s airway.  The airway is almost completely obstructed again by floppy tissue.  At every bronch in the past, Dr. McClay has taken out floppy and granulation tissue.  The floppy tissue keeps growing back (this is unusual), so Dr. McClay didn’t even microdebraid (remove) any of the tissue this time.  We’ve obviously got to come up with a new plan of action.
Dr. McClay discussed two options with us.  He isn’t sure at this time what he wants to do, so his conversation with us was confusing.  He mostly was thinking out loud to us, using lots of very technical terms and uncompleted sentences. My understanding of our two options are as follows:
1)       Dr. McClay could resect the area of Luke’s trachea that is floppy.  The section is about 4 cm in length, just below the vocal chords.  Basically, McClay would completely cut out the section of trachea, then stitch the ends together.  This is a complex surgery, and because of the proximity of the area to the vocal chords, nerve damage is a risk.  If the nerves are damaged in the surgery, it could possibly leave Luke without a voice.  Dr. McClay said that this has never happened to any of his patients before, but it is a risk we need to take into account.  Additionally, in order to protect the resected airway, afterwards, Luke’s chin would need to be sutured to his chest for 10 days to keep him from turning his head while the airway heals.  That would be really hard with a three year old as active as Luke.  This is also a consideration.  On the positive side, this option would mean we could decannulate Luke at the time of the resection without having to go through capping trials or a sleep study.
2)      Dr. McClay could place a T-tube tracheostomy in place of Luke’s current trach tube.  This is a different kind of trach tube.  Imagine a T flipped on its side.  The top of the “T” would go into Luke’s upper and lower airway, and the bottom of the “T” would extend out of the stoma in his neck.  The benefit of this tube would be to hold open the part of the airway that is floppy and “teach” the tissue the right way/place to grow.  Dr. McClay says that Luke would probably wear the T-tube for about six months, and then we could see if that “does the trick.”  While this option is much less risky and invasive, my understanding is that this option is much less likely to work.  Although we are very proficient in the use of Luke’s trach, the T-tube is a different apparatus and would create different challenges.  I will try to attach pictures to help you get an idea of what the T-tube would look like.
Dr. McClay is going to consult with a few other leading professionals in the field, one at Children’s in Dallas and one in Cincinnati (the place where these kinds of surgeries were developed).  As he gets information and forms an opinion, he should be in touch with us. At the latest, we will talk with him Aug. 1 at the post-op appointment and hopefully create a plan then.  Since Dr. McClay did not remove any tissue, Luke really can’t sleep with his cap on.  We will be canceling the sleep study that was supposed to take place on July 31.  We will discontinue capping trials while sleeping for the time being.  Since the issue is not a matter of muscle tone or practice, pushing Luke to wear his cap when he’s uncomfortable is not helpful. The amount of obstruction in Luke's airway also explains Luke's resistance to wearing his cap while eating lately.
Another concern is Luke’s upcoming heart surgery.  A major deciding factor in when the heart surgery will take place is whether Luke has a trach or not.  The cardiologist would much prefer Luke to be decannulated before the heart surgery because having a trach creates a much higher risk for infection and for that infection to travel into Luke’s chest and heart.  Dr. McClay suggested that if heart surgery needs to take place before decannulation, we could decannulate Luke during the heart surgery, place a dressing over the stoma, and intubate him while he recovers, then re-trach him once the highest risk for infection has passed.  Dr. McClay will consult with the Luke’s cardiologist, heart surgeon, and anesthesiologists when that time gets closer. 
So how do we feel?  While both the T-tube and the tracheal resection both present completely new territories for us, we feel hopeful that we have some new information and new options to explore.  As you can imagine, we are feeling a mixture of anxiety, hope, duty, dread, nervousness, anticipation, relief, and tiredness.  We continually look toward the time when we will be able to put surgeries and hospitals behind us, but we are not at the end of this road yet.  We appreciate everyone’s continued prayers for God’s perfect timing to be manifested in our family and Luke’s precious life.  We want to pray for knowledge, wisdom, and discernment to come to our doctors as many big decisions are looming before us.  And as always, we ask prayers for peace, comfort, and endurance for us as we travel this road. 
We are so thankful for your support and prayers every day!


Rachael, David, and Luke
T-tube tracheostomy. You can see how the top of the "T" extends to the upper and lower airway.

Monday, July 9, 2012

Monday 7/9

Approx 1:30 pm
They got Luke back to the OR just now (1:30). Luke's old enough now to smell something fishy going on. He cried when the nurse carried him out. So did I. Now we're waiting.

Another Bronchoscopy

Luke is having another Bronchoscopy tomorrow (today 7/9). We go into Children's Medical Center downtown at 10:45. 
It's hard to remain hopeful after doing so many of these procedures without great results. This will probably be our last effort at making decanulation this year. We hope and pray that Dr. McClay will be able to remove more tissue and that that will do the trick, or that God will reveal to him whatever it is that is holding Luke back. We are frustrated and mystified as to why we have not so far been able to discern the reason why Luke has not been able to sleep well with his cap on. One reason could be that the soft tissue in his airway just needs to strengthen and harden, which will only happen with age. This is the opinion of Luke's Pulmonologist. Or there could be something wrong that can be fixed surgically. So far we haven't been able to figure that out, but I believe that this is probably the opinion of the ENT and that's why we're doing one last Bronchoscopy before his sleep study on 7/31. 
A great deal is hinging on tomorrow and the next three weeks. Our highest hope would be that tomorrow's surgery is more successful than we expect, that Luke is then able to breathe well asleep with his Trach capped. In that instance, we would be able to pass a sleep study, allowing decanulation on 8/13. If all of that happens, Luke's third and final heart surgery would be delayed until Spring 2013 when he is Trach free. If surgery does not help, Luke's airway will stay the same, and Luke will not be able to pass a sleep study. We likely will cancel the sleep study and the subsequent Bronchoscopy on Aug 13. Then we will have conversations with Luke's cardiologist for scheduling a heart catheterization and heart surgery sometime this fall. Still having a Trach will mean that Luke has a higher risk of infection during that stay in the hospital, so it is preferable on that front as will that Luke's Trach is removed.
We would love for our family to join with us in praying for the following: 1) that the problem with Luke's airway will be specifically and definitely revealed. 2) That the problem would be immediately (meaning tomorrow in the OR) repairable. 3) That the anesthesiologist will be able to get the necessary IV line on the first try. We are concerned because Luke is not allowed to have anything in his stomach after 8:00 tomorrow morning, and we are worried that he'll be a little dehydrated for surgery (fluid makes your veins plumper) and he is a hard stick anyway. 4) that the capping trials while sleeping over the next three weeks go very smoothly and easily. 5) that Luke is able to pass a sleep study on the 31st and that we are able to decanulate him on Aug 13. And 6) That God's timing is perfect for Luke's third heart surgery, whether it be this fall or next spring. 
Thank you so much for your prayers and your support. Love you!