Friday (4/29/11)

Please pray for Luke. His o2 sats are somewhat lower than normal while he's resting. It's been a lowering trend over the past several nights. We hope its the barometric pressure that's affecting his breathing (he's a "weather baby"), but there's always fear of infection. We're waiting on a plan of action from his pulmonologist. Please pray that he can stay infection free and get his LTR surgery next Monday.

On the Road (to the hospital) Again...

Well, surgery season has begun.  Luke went in for his fifth broncoscopy on Monday, April 11.  This is where the ENT (Ear, Nose, Throat) surgeon sends a camera down Luke’s airway to check the status of the airway tissue.  Just like the last one, we took Luke to Dallas Children’s Medical Center, and Dr. McClay was the surgeon. 

Luke is continually getting bigger and stronger.  He got through this procedure with flying colors.  As a family we are getting to be much practiced at pre-op appointments, the questions to ask the anesthesiologist, and going to the hospital with a hungry baby.  This time around my parents came to be with us, so we had two extra pairs of hands to help with Luke.  Everything went extremely smoothly.  The nurses came and took Luke to the OR about an hour before I anticipated they would.  As she carried him beyond the doors, Luke spiritedly grabbed the nurse’s glasses and threw them (somebody’s mamma ought to discipline that kid!).  It felt comforting to know that Luke wasn’t upset or worried, just ready to play. 

We sat down in the waiting room and about 45 minutes later, the lady at the desk called me and David over.  I was thinking “Oh, the anesthesiologist got the IV line in, and they want to tell us that they are now starting the procedure.”  Nope.  She called us over to tell us Luke was headed to recovery and we were to go to the conference room to talk to Dr. McClay.  I was astounded.  Nobody had ever gotten in a line in Luke so quickly, much less done an entire broncoscopy. 

We had hoped and asked everybody to pray that Luke’s airway tissue would be hard and that the doctor would be able to just expand the airway by lasering out some tissue.  Evidently this wasn’t the case.  Dr. McClay decided the best course of action at this point is to go ahead with the airway reconstruction (LTR = Laryngotracheal Resection).  When we met up with Dr. McClay, we learned why the procedure itself was so fast.  As I had guessed, Luke had built up a significant amount of granulation tissue to obstruct his airway again.   Since he’s going back in for the LTR May 9 and Luke had only been off of asprin for a few days, he decided to leave the granulation tissue for now and remove it during the LTR. 

We got to see Luke about 45 minutes after he went to recovery.  In about half an hour from our arrival, we had already weaned Luke off of oxygen completely.  Again, we were amazed.  Even during Luke’s last bronc in November, it had taken him several hours to wean off oxygen, and he was desatting with every suction.  This time, his sats weren’t going below normal range at all with suctioning.  At about 12:30, we moved Luke up to the Cardiac ICU to finish recovering.  At about 3:00 we were finally able to give Luke some Pedialyte through his g-tube.  When it was evident he was tolerant of clear fluids, we were allowed to give him formula.  Discharge came very quickly after that, and we were home by 5:30.  I don’t think the day could have gone smoother. 

While we were a little disappointed that Dr. McClay wasn’t able to laser out the tissue during the bronc and fix his airway then and there, we were really expecting to have to go the LTR route.  So we are planning to take Luke in for major surgery May 9th.  We are expecting a four hour long procedure followed by a 2-4 day stay in the Cardiac ICU followed by a 3-5 day stay on the inpatient floor.   Spending the day in the hospital made us realize how difficult LTR week is going to be.   It only took a few hours post-op for Luke to feel fairly normal.  It was so difficult to keep Luke contained in that hospital crib!  Luke had attached to him three leads, an IV, a pulse ox, and a blood pressure cuff.  By the end of the afternoon, everything was just a big mass of tangled tubes and wires.  We were exhausted after one afternoon of trying to keep Luke from pulling everything off and out (including his trach!).  We are definitely going to need prayers for stamina as we help Luke recover in the hospital for a whole week.

So after a long (and heated) discussion with Dr. McClay’s surgery scheduler yesterday and another conversation with his nurse today, here’s the run down of road to Luke’s decanulation:  May 9th, we’ll do the LTR with about a week’s stay in the hospital post-op.  We will have another bronc June 6th to take the stint out that Dr. McClay will have placed during the LTR.  This procedure requires a 23 hour observation, so we’ll stay at the hospital overnight for this one.  On June 20th we’ll have another broncoscopy to check for scarring, and if all goes well we’ll go home that same day.  On June 25th, Luke will stay overnight for a sleep study to see how he does at night breathing with his trach vs. breathing without it.  Finally, on July 18th, we’ll do the (hopefully) last bronc to make sure everything has gone as planned.  If it has, we should be able to expect that Luke will return from that OR trach-free!

I need to take this opportunity to tell you just how difficult having a toddler with a trach is becoming.   Thursday after the bronc, I was home alone all day with Luke.  I had been fighting with him all day about trying to keep his HME (heat/moisture exchanger) on his trach.  Finally he pulled it off, but I heard a different sound.  It sounded like it does when Luke pulls and pulls and finally works a hole in the external part of the trach (not life threatening).  So I took my time picking him up and carrying him to the couch to check it out.  Then when I looked at it, I realized Luke had stretched the trach and pulled the inner part of the trach out of his throat, and it was resting against his neck, still attached with the ties.   By then it was getting more difficult for Luke to breathe (remember he has a very narrow airway that is partially obstructed by granulation tissue).  I took the ties off, and for some reason felt like I needed to carry him to his room to put the trach back in (I’m still kicking myself for the time this cost him!).  I tried and tried to get that trach back in, but by that time, Luke was panicking, clawing at his airway and flailing around.  Without lubrication or the metal rod that goes in the trach to make it firm for insertion, I couldn’t get the trach in at all.  Finally, I got a fresh trach with the metal rod already in it, but even then it took me several attempts.  The whole time I was just praying “God, do not let this baby die now!”  Finally I was able to pin Luke’s arms behind him and get the trach in.  I have no idea how long it took me, but my baby was pretty blue by the time I was able to get the trach back in safely.  For a long time afterward I just held him and rocked him and we both sobbed our eyes out.  We need your prayers that we won’t have any more emergencies like that.  I need for Luke to keep his trach in until his LTR and his airway is open enough for him to breathe safely even if he pulls his trach out accidently. 

Dr. McClay explained that 90% of his kids that go through the LTR surgery and decanulation process do so as expected without any problems.  About 10% of the kids have issues with scarring, preventing decanulation.  I don’t know what happens if Luke is part of the 10%.  We’ll cross that bridge if we get there.  We would love for you to pray that from here to decanulation, everything goes just as smoothly as the last broncoscopy did.  We ask you to pray for no surprises, no hang-ups, no illness or infection, and no new issues.  Another new issue or missing our summer decanulation “window” again would devastate us.  We are literally counting down the days to no more trach changes, trach care, constant suctioning, or nursing.  We ask that you pray simply that this time decanulation will be a reality instead of just a really great dream.

Thank you, as always for your continual prayers and words of encouragement.  We are so blessed to share this journey with you, our brothers and sisters in Christ.  We look forward to the day when we can announce that we’ve put trachs, surgeries, and hospitals behind us. 

Blessings,

Rachael, David, and Luke

Thursday

I'm a little emotional. Luke's respiratory therapist just came and took away his ventilator and oxygen concentrator and all the attachments. Even though he hasn't used either since last June, it's still surreal to see it leaving our home and family forever. Thank you everyone for your prayers that have gotten us to this point!

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