Wednesday

Just got home from our first appointment with second opinion ENT. Did a brief in-office scope of Luke's upper airway that revealed nothing we don't already know (vocal chords are not paralyzed and his airway is narrow). Scheduled another broncoscopy for 11/27. That is A MONTH AWAY. That's a long time for us to know nothing and sit on our hands. Frustrated and tired after a full day navigating the medical system.

Luke: The Early Years

*photos courtesy of Aunt Rebekah

Tuesday

Just got back from Luke's pulmonologist. He believes very strongly that Luke has an "upper airway issue". He advised us to get a second opinion from another ENT. We'll see Dr. McClay Oct. 27 and see if he has any great wisdom for us. I'm having a tough time dealing with the fact that there's something "new/additional" that we're dealing with. We appreciate your continued prayers.

Monday

Going to see Luke's pulmonologist tomorrow. Don't have the kid capped as we hoped. Pray for us.

Tuesday

Luke pulled up to STANDING for the first time today. He's pretty proud of himself. We're pretty proud of him. It's only been a year since we got him home for the first time. I'm so excited to have gotten to this milestone. Singing praises to my Lord.

Luke's Second Broncoscopy

Hey everyone.  I wanted to update you all on the latest from the Chisholm household and Luke’s journey to medical freedom.

A week ago on Monday, I took Luke to Medical City for two appointments, ENT and cardiology.  I was quite nervous to take Luke by myself.  I’ve driven Luke to physical therapy appointments on my own each week for a few months by myself, but that road is a back highway with lots of places to pull over if Luke needs suctioning or something else.  This time, I would have to travel on two interstates and another major highway to get there.  Plus, we were looking at 45 minute trip versus the 20-25 minute drive to therapy.  By the way, David couldn’t go because he had to officiate at the funeral of a much respected member of our congregation.  Well, we did fine.  I took a different route to the hospital to avoid a long section of construction (and NO pull over spots), which added to my time, but gave me piece of mind.  I had to pull over once each way, but we didn’t have any difficulties with that.  I was really worried about the trip, so I want to thank all of you who prayed for us that day.  Things went very smoothly. 

First up was the ENT (Ear, Nose, and Throat Surgeon that placed Luke’s trach).  Dr. Chung was quite perplexed that Luke has been able to breathe through the PMV (Passy-Muir valve, or speaking valve) with all that gauze and tape on there, but cannot make the jump to tolerate the cap.  We disguised the cap, just to make sure the rejection of the cap is physiological and not psychological for Luke.  Indeed, it’s not that he won’t accept it, it’s that he physically can’t right now.  Dr. Chung told me that the only thing he could think of that would cause Luke to respond this way is that Luke has grown up more scar/granulation tissue in his airway, making it more difficult for him to breathe.  He suggested doing another broncoscopy in which he would drop a scope down Luke’s throat to see what’s going on and remove any excess tissue that has built up if necessary.  He told me that his priority is to get Luke decanulated.  That was music to my ears, so we scheduled the bronc for the first available time, which happened to be on Thursday morning, three days away.   Dr. Chung told us to come to the hospital prepared for an overnight stay, because he might choose to keep Luke overnight for observation. 

In between appointments, I took Luke to tour the new Children’s Tower (which is dazzling!) and to visit old nurse friends.  We even got to visit Dr. Mendeloff (Luke’s heart surgeon) and Dr. Harris, Luke’s favorite anesthesiologist. 

At the next appointment, Dr. Kao was very well pleased with Luke’s progress.  Luke even kept trying to give her hugs when she was listening to his heart.  The EKG was unremarkable, and we’ll wait until the next time (late December) to look at his heart via sonogram.  It was quite a short visit, and nothing outstanding happened – the kind of visit you’re glad for in Luke’s case.  So we went home to prepare for surgery day. 

Thursday morning we left the house by 5:45 am.  By the time we got to the day surgery room, Luke was awake and flirting with all the nurses.  Just after 8:00, they gave Luke some “goofy juice” to help with separation anxiety, and took us to the pre-op holding room.  We met briefly with the anesthesiologist (alas, not Dr. Harris) and Dr. Chung.  I asked Dr. Chung outright if it mattered to him what season/time of year it is for Luke’s decanulation.  Dr. Chung said he didn’t care.  He wants to get Luke’s trach out whenever he’s ready, regardless of time of year.  More music to my ears! 

Luke gave us some good laughs from being “drunk” on his “goofy juice”, and by 9:00 we had left him in very capable hands and settled down in the OR waiting room.  Soon after, one of our close nurse friends, Ellie came to wait with us.  It was her day off, so she brought her cute little boy who entertained us for the rest of the time we waited. 

Surgery took about two hours, and then Dr. Chung came out to tell us what happened.  He had removed another ball of tissue above Luke’s trach, although not as big a piece as he did back in May.  He also explained that Luke’s vocal folds are thicker than normal, so he “thinned out” one of them.  He didn’t do both so that scar tissue from both sides wouldn’t grow together and put us back where we started.  He also prescribed a steroid to discourage scar tissue from re-growing, but warned us that we very well might have to repeat the surgery in a few months.  He strongly encouraged us to really push getting Luke to use the cap, because the more airflow that portion of his airway gets, the less likely it is that the scar tissue will re-grow.  So, conclusively, Luke’s rejection of the PMV at times and the cap all the time is not due to stubbornness or us as parents not being firm enough.  I don’t know if I’m more relieved to know that this all has a very physical cause, or ashamed that I pushed him so hard to use the cap and he physically could not do it.  Poor kid was doing the very best he could with an airway the size of a coffee stir straw.

Dr. Chung took us back to see Luke.  His o2 sats were stellar and he was sleeping.  Dr. Chung put his thumb over Luke’s trach to occlude it, to see if Luke could breathe.  Luke took several breaths, though he fussed a lot.  Dr. Chung told us that it’s obvious Luke isn’t comfortable with it now because he’s not used to it yet.  David and I sat at Luke’s bedside while he slept.  The nurse weaned him off oxygen, and he maintained very acceptable o2 sats.  Not long after that, we got to move to a post-op room.  Luke continued to sleep into the afternoon.  We started a Pedialyte feed, and Luke kept the fluid down.  The nurse told us we could leave whenever we were ready.  We walked out of the hospital at 2:30 the same day!  No funny business! 

After Luke’s broncoscopy in May, he wasn’t able to tolerate wearing his PMV until post-op day five.  I told myself at the beginning that I wasn’t going to get discouraged this time until day five.  That’s tomorrow.  Just when doubt and worry started to creep in today, I tried the PMV (no gauze or tape) while letting him watch a movie in his Exersaucer (double distraction!).  After just a little encouragement, he quit pulling at it and started chattering happily!  Oh, how I missed that sweet baby voice!  I tried the PMV several times this morning before his nap, once during, and another time afterward, but no dice.  I guess he just needed a distraction for long enough to remember he can do it.  Our plan is again build up the PMV with gauze and tape, and then try to push the cap in the next few days. 

We’re asking you to pray once again for Luke and for his parents.  Pray for Luke that his throat heals with minimal scar tissue re-growth.  While we would of course do it if we have to, we would love to avoid any more surgeries like Thursday’s.  Pray that we can work back up to the PMV with gauze and tape, and finally the cap.  It would be ideal if we could have Luke capped comfortably by the time we visit his pulmonologist on Oct. 12 or when we visit Dr. Chung for his two-week follow up on Oct. 15.  That is not very many days away.  Pray that we can get him decanulated very soon, and that his pulmonologist will be on board and not force us to wait until the spring.   As always, we appreciate prayers for David and me, that we can have wisdom, strength, endurance, and serenity to get through whatever is ahead.    

We treasure all of your encouragement and prayers.  We survive on them.  God’s grace is indeed sufficient.  Thank you all.

Blessings,

Rachael, David, and Luke

Catching Up...

September 30

Just got home with a somewhat fussy but quite healthy (for him) baby. Doc pulled out another clump of tissue out of Luke's throat - although it wasn't completely obstructing the airway this time. Luke's o2 sats are a tad bit lower than normal, but he should be back to normal by the morning. Praising God for a successful surgery, quick recovery, and that we don't have to spend the night at the hospital tonight!

October 4

Luke is wearing his PMV a full 28 hours earlier than he was able to after his last throat surgery! Babbling away. Oh, how I missed that baby voice!