Graduation

Luke has made a medical milestone, so I wanted to share our joy (and relief!) with everyone before surgery season begins in a week and a half.

Tuesday we took Luke to his dreaded Vent Clinic appointment.  Why is it dreaded?  It’s kind of like a one-stop-shop for getting x-rays, blood work, seeing a dietician, getting medical supplies ordered, and of course seeing the pulmonologist.  It’s great to get all of that done in one appointment, but it can take anywhere from 3-6 hours from arriving to leaving, not to mention our 45 minute drive both ways.  So you sit in a room with a crib, a TV and two chairs, with only a curtain separating you from the rest of the busy, very noisy vent clinic, hearing all the other patients’ crying, vents, suction machines, and alarms.  Plus, they always do blood work to check Luke’s blood gas and electrolyte levels to avoid an issue with his sodium.  Any time we do blood work with Luke, it’s anybody’s guess how many times they’ll have to stick him before they get a good draw.  The inside of my baby’s elbows are all scars from the cut downs he’s had during his hospitalizations. 

This vent clinic wasn’t too terrible as far as time goes.  We were out of there in three and a half hours.  The blood work was the worst.  Luke got stuck four times before they got enough blood to run the tests they needed.  David and I both would have said “three strikes and your out” if we weren’t both so paranoid about his sodium level.  We NEVER want to deal with that again.  So fourth time was a charm, and sodium level came out perfect.  Blood gas was stupendous.  Poor Luke crashed against his Mamma as soon as they got the needle out of his arm and he calmed down a bit. 

We saw Dr. Copenhaver who was really impressed with all of Luke’s numbers.  Luke is meeting his growth/weight goals, so that’s a relief too.  The doctor is so comfortable with what Luke is doing medically, that he’s ordered our Medical Supply company (DME) to remove the ventilator and oxygen concentrator from our home.  Luke hasn’t used either of those pieces of equipment in 9 months or so, but we still had to keep them around in case of an emergency.  Any time we get to get rid of a piece of medical equipment is a celebration.  So we’re getting rid of the vent and oxygen concentrator for good.  We’ll still keep a few oxygen tanks around, just in case. 

The biggest deal for us though, is that we no longer have to attend vent clinic.  Luke is doing so well that he can now graduate to just seeing the pulmonologist in his office, which is at Medical City (no vent = no vent clinic!).  We will continue to see a dietician at the same office where Luke receives physical therapy (Our Children’s House at Rockwall).  David and I are cheering that we don’t have to go to Our Children’s House at Baylor anymore as far as we can see.  This is a big day for our family!

Now that we have vent clinic behind us, we are looking forward to a few weeks from now.  April 11th will be huge for us.  Luke will go in to have a broncoscopy (camera down his airway) done by our new ENT, Dr. McClay.  The results of this procedure are very critical.  To our simplified understanding, we have been waiting for Luke’s airway tissue to mature.  It can form/mature one of two ways:  hard or soft.  If during the broncoscopy, Dr. McClay finds that the tissue has matured enough and has formed hard, he should be able to laser out enough tissue to open up Luke’s airway, making it so he no longer needs the trach.  If this is the case, we don’t know how long after this procedure until decanulation (trach removal), but we’re hoping not too long, maybe a matter of weeks.  The more likely scenario is that the tissue will be soft.  If that is the case, Luke will undergo an LTR (Laryngotracheal Resection = airway reconstruction) May 9th.  Dr. McClay will take cartilage from Luke’s ribs and use it to restructure his airway, making it open enough for Luke to breathe without a trach.  If this is the route we have to go, the current timeline we have from Dr. McClay is decanulation mid July. 

We would like to ask everyone to send your praises up to our Father for this milestone Luke has achieved by graduating from vent clinic.  We also ask you to remember April 11th in your prayers.  We ask that God would prepare the quickest, simplest, and smoothest way for Luke to get his trach out.  I think I would fall over with joy if I got to take Luke to the zoo for his birthday with no trach, no suction bag, and no emergency supplies.  I would love to take Luke swimming this summer.  As always, we ask you to pray for Luke’s parents that we are able to accept whatever verdict comes from April 11th’s procedure and beyond. 

Thank you all for your faithfulness in prayer and in encouraging us.  We are so grateful for all that you do!

Love,

Rachael, David, and Luke