Thanksgiving 2010

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Luke's Fourth Broncoscopy

Yes, it is Luke’s fourth, even though I titled the last note “Luke’s Second Broncoscopy”.  Last night I was thinking over all the procedures Luke has had to be anesthetized for, and remembered that Luke had one broncoscopy before he was trached at 3 months old.  Anyway, this is the story of Luke’s fourth bronc. 

After Luke’s third bronc in September, our ENT surgeon, Dr. Chung, told us that he had removed more tissue that had grown up in Luke’s airway above Luke’s trach.  Dr. Chung was confident that Luke should be able to begin using his cap and moving towards decanulation within a few weeks.  As you already know, the longest Luke has tolerated his cap has been for 13 breaths (a little longer than 30 seconds).  That puts us still a ways from decanulation because Luke has to tolerate the cap around the clock before they will consider pulling his trach.  At our most recent visit with our pulmonologist, Dr. Gelfand suggested that we get a second opinion from another ENT surgeon specializing in pediatric airway issues.  His office set us up an appointment with Dr. McClay for the end of October. 

As expected, Dr. McClay wanted to send a scope down Luke’s airway so that he could see with his own eyes what might be causing Luke’s difficulties.  The broncoscopy (4th total, 3rd within seven months) was scheduled for yesterday morning at Children’s Hospital. 

I went in with quite a bit of anxiety and dread.  So far, we have done nearly everything concerning Luke’s care through our doctors at Medical City (there was that five-week stint at Our Children’s House at Baylor, but we don’t like to talk about that).  Everything from blood work to MRI’s to ER visits to Luke’s major surgeries has been performed at Medical City.  As you can imagine, David and I are quite attached to the folks that work there and accustomed to the way that hospital works.  I can get pretty high anxiety in new situations like this.  I was dreading not knowing the people caring for Luke, not knowing my way around the place, not knowing the rules of the hospital, etc.  Plus, I didn’t have high hopes for finding out any new information about Luke’s difficulty, since Dr. McClay declined to confer with Dr. Chung. 

We arrived at Children’s Medical Center at 7:15 yesterday morning.  I admit I was very impressed with the ease of finding our way around, with the parking, and with the helpfulness of the staff.  If you walk into a room looking slightly like you don’t know where you’re headed, someone asks you if they can help you get where you’re going.  Checking in and getting Luke ready for the OR was fairly easy and straight forward.  The staff was really good at answering questions and telling us how things would go.  We waited quite awhile from the time we were finished with pre-op before the nurse came to take Luke to the OR. Even though this was the sevententh time they’ve taken Luke like that, I still cried.

The procedure took about an hour and 10 minutes until the doctor came and spoke with us about his findings.  He cleared out another chunk of granulation tissue in Luke’s airway above his trach, although, I don’t know how large it was compared to the others that have been removed at other times.  Dr. McClay showed us pictures of Luke’s airway and told us that it is significantly narrow.  Before he dilated the airway, the pictures looked like his airway is just a slit, where it should look like a pipe.  He dilated the airway to find out the nature of the tissue.  From my understanding, it was difficult to do and nearly impossible to keep it dilated.  This told him that the tissue is quite soft and immature.  Because of the immaturity of the tissue, he can’t do anything to repair it at this time.  It’s impossible to know how the tissue is going to change in the near future.  He expects that Luke’s airway tissue should mature enough to know how to correct it by the time he’s two years old.

So our plan is to take Luke back to Children’s for another bronc in April (Luke will be almost two).  At that time Dr. McClay expects that he should be able to correct the narrowing (called stenosis) one of two ways.  If the tissue is hardened, he expects that he can laser the tissue out, with minimal chance that the tissue will grow back.  If the tissue remains soft, cartilage can be taken from another place in Luke’s body and grafted into his airway, for an airway reconstruction.  This will firm up Luke’s airway and help it to stay open to allow for breathing.  Either procedure should allow Luke to breathe without his trach, although I don’t know how soon after surgery we should be able to decanulate.  I don’t know if it would be immediate or a gradual thing to give us time to make sure tissue doesn’t grow back, etc.  Until then, we’re just going to do what we’ve been doing as far as Luke’s care is concerned.  We’re going to continue getting nursing care, making sure that Luke can use his PMV all the time (not taking it off whenever he gets stressed), and allowing him to grow and catch up developmentally as fast as he can. 

I was pretty impressed with how the hospital handled Luke’s recovery.  Usually, kids go into the Post Anesthesia Care Unit (PACU) after surgery.  Since Dr. McClay knew that Luke is primarily a heart baby and has had a tough history, he arranged for Luke to bypass the PACU and go directly to the Cardiac Intensive Care Unit (CICU) to recover.  This unit is, for all intents and purposes, just like home-sweet-home CHSU (Congenital Heart Surgery Unit) at MedCity.  The staff was very attentive to Luke, helpful to us, and allowed us to take as big a part in Luke’s care as we wanted (we even ended up writing part of Luke’s discharge summary since they rarely send a patient home from that unit).  I had been worried that since the staff didn’t know us, that they wouldn’t allow us to suction Luke, etc., and we would have to wait for the staff to do everything.  This wasn’t the case at all.  I was comforted by their friendliness.

Luke did well coming out of anesthesia.  He was expectedly fussy when he woke up, but holding and rocking, mom’s signing, and VeggieTales helped quite a bit.  He was sitting up quicker than after all of his other broncs.  We had a bit of trouble weaning him of oxygen.  Luke’s secretions were really thick and bloody (sorry if that grosses you out), and he had very little reserve when suctioning.  Every time we’d suction, he’d desat.  Once he went as low as 34%. 

The staff was a little nervous to allow Luke to go home after a desat like that, but our nurse advocated for us after he saw David’s and my skill in taking care of Luke (using oxygen, suction machine, pulse oximeter, etc.).  Luke got stronger and stronger and stopped desatting so far when we’d suction.  By the time we left he was only desatting to the low 70s% after a suction even after we’d weaned him completely off of oxygen.   By 5:30, the discharge papers were written, and we were rolling Luke down the hall to freedom.   

We got home and got Luke settled.  Mercifully, our night nurse offered to come in early so we could all rest after a really long day. 

So now, we wait.  We plan on enjoying our holiday season while we continue to care for Luke as we always have.  We are holding out the hope that with the arrival of spring and Luke’s second birthday that we’ll get to celebrate with a big ol’ decanulation party.  We are thankful that the procedure yesterday yielded some answers and a vague plan.  We continue to ask for your prayers for patience, wisdom, and endurance, and as always, Luke’s continued safety and improved health.  Thank you for your prayers yesterday and every day. 

Blessings,

Rachael, David, and Luke

Monday

Luke has been out of the OR since about noon. He did great all through the procedure and coming out of anesthesia. He's awake and fussy off and on. We should be able to take him home later this evening if we can wean him off oxygen. I'll update everyone on the results of the broncoscopy in a note tomorrow.

Small Emergency

So... Luke didn't exactly pull his trach out...

For months, especially when his speaking valve (PMV) is on, we have been trying to keep Luke from pulling on his trach.  Sometimes he pulls at it frantically to try and get the PMV off.  Lately, he's just been pulling on it, and when the filter (called an HME - Heat/Moisture Exachanger) comes off, he likes to put it in his mouth and hold it between his teeth.  Makes him look like he's smoking a cigar.  It's difficult to relay to him the seriousness of the matter when you're cracking up at the way he looks with that thing in his mouth.  

This evening, I was drying my hair, with Luke sitting in his bouncy seat (yes, sometimes I can still keep him contained in it for short periods) since he was still sleepy from his nap. David was still at work, we were alone in the house.  When I turned off the hair dryer, I heard a strange whistling noise coming from Luke.  It wasn't the same whistling that he makes when his trach is out (during trach changes), nor was it the whistling he makes when his HME comes off or he needs suctioning.  I looked over and my heart leaped out of my chest.  I couldn't see his trach protruding from under his chin like I normally can.  I knelt down to look more closely.  He hadn't pulled his trach out, but he had pulled it apart.  He separated the trach in two from pulling on it so hard.  (See picture below).  

Normally we have trach ties on his back-up trach so it's ready to go in case of an emergency.  I dropped the ball on that this week.  The trach was where it was supposed to be, but without ties on it.  I rushed and set Luke on the floor of his room, tried to put one tie on the trach and just gave up.  Luke was starting to panic and turn a little gray.  Anyone want to guess who else was on the verge of panic??

I kept my cool. All I could think was "He's got 2 minutes without oxygen, and he's still breathing.  I've got time to do this."  I didn't take the time to swaddle him or put the other tie on (turns out I put the first one on backwards anyways).  Changed the trach without really even thinking about it, and got the ties on and fastened around Luke's neck.  We're both fine, although a little rattled.  Luke was pretty mad that we had to do trach care twice tonight, but I think he's over it.

I just wanted to share that I'm proud of myself for doing our first emergency trach change, by myself none the less.  Thanks for your prayers (and your cheers!).  

Anyway.  Just thought I'd share.

Rachael

Above you can see a picture of Luke's broken trach. The pieces are completely separated. The right "tube" portion of the trach is the part that goes inside Luke's trachea. The perpendicular part is the part that lays against Luke's neck (or lack thereof). On the left side is the extension part of the trach that holds the opening away from his neck so we can access the opening. The opening portion is the part he separated (on the far left). You can even see the coiled wire popping out (I'm glad it didn't cut him!)!

Halloween 2010

*thanks Aunt Rachel and Uncle Blake for sharing your pictures!

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!

Monday

Just got back from the doctor's appointments. ENT wants to do another broncoscopy to check Luke's airway to see why he won't tolerate capping his trach. We're scheduled for early Thursday morning. Everything else (cardiac) is great. I'll write a note soon. The trip up to Dallas (alone) went very smoothly. Thanks for your prayers.

Capping Progress Report

Hello friends and family. I wanted to give you an update on the progress Luke has made towards capping his trach.

Last time I wrote, it was with relief that there was no hard and fast deadline towards getting decanulated before the fall. David and worked hard at building up the gauze and tape on Luke’s PMV to make the transition smoother between PMV to cap. Even though there is no hard deadline. My (over-achiever?) brain still imposed a soft “if we can’t get it by mid-August, it’s not going to happen” deadline. So we pushed. I prayed fiercely every day multiple times that God would allow us to get Luke decanulated by the fall. I hung all my hopes and dreams on decanulation by fall.

As many of you more experienced parents know, kids go at their own pace. Sometimes pushing them too hard tends to get them to go the opposite direction. I pushed too hard. My days started revolving around how many pieces of tape and gauze I could put on his PMV. Resentment started building up (at no one/nothing) in particular whenever he’d have to take steps backwards or start with less resistance in the mornings. I remember one Wednesday night at church after giving Luke a breathing treatment, I could not get him to wear the PMV again. He held his breath and turned blue. When he did take in some air, he let it out crying at the top of his lungs. He struggled against me because I was holding his hands to keep him from ripping the thing off. I was mad at Luke for the first time ever: “Wasn’t he just being stubborn? Didn’t I have to win this battle in order to be a “good parent” and to teach him that he can’t manipulate me? I’m the parent! I’m in control!” But I wasn’t in control. There had to be a better way. So I took the PMV off. As Luke calmed down, I became more and more distraught. I held him and cried like a big ol’ baby in the church’s cry room.

It was a few days after that when I started to become resigned to the fact that we weren’t going to make this self-imposed mid-August deadline. It was a grudging resignation, and I was honest with God about that. In my search through blogs and chat rooms trying to find some help or ideas with an easier way to cap Luke’s trach, the Lord gently reminded me that this isn’t the end of the world. He showed me posts of other moms of kids who have been trached for years and years – and will probably never be decanulated. If they can do that, I really need to not be whining about another 9 months. A quote from a friend about God sometimes not being very interested in the end result of our prayers, but very interested in what we learn through the process, got me started thinking about what I need to be learning from this process instead of demanding that God heal Luke to my satisfaction and on my timeline. Another quote from a different friend reminded me that we lose a lot of fulfillment when we rush things. I admitted to God that I was rushing. I’ve never rushed something so intensely in all my life. So all of these things together helped me adjust my attitude. I was still very disappointed, but no longer resentful and much more peaceful about the situation.

With David in agreement, we dropped all the way back to the plain PMV with no gauze or tape. We started letting Luke drive this wagon (for good or for ill, as far as parenting goes). If he didn’t want to wear the PMV, we gave him a break. If he didn’t want to fall asleep with it on, we took it off until he fell asleep.

Then a pretty cool thing happened. I started noticing things about Luke that I had been too focused on the capping process to really appreciate. He was swallowing faster and easier during speech therapy. He started rolling on his own, and even spending time voluntarily on his tummy! He’s sitting up on his own for long minutes and enjoying it. He’s been encouraged to explore his voice by our friend Jay Trischitti (and of course us!). He’s now very proficient at saying “ya ya ya!” and getting better at “da da da” and “la la la”. He’s going to be crawling any day now, and he’s standing when you support him and encourage him to. He’s started to express his love for Mama, Daddy, and others with the sweet, sweet gesture of laying his head on your shoulder and then looking up and grinning at you. I was seeing these things, but was not fully appreciating them (or thanking God for them) as the miracles they really are.

So where are we now? Luke is just wearing the PMV (no gauze or tape) right now. Most of the time during the day, he’s been doing it without protest, though we still have our moments. Today and yesterday he fell asleep for his first nap with it on (he had regressed to not being able to fall asleep with it on). I’m starting to learn the difference between him telling me “Mom, I don’t really feel like doing this right now” – which I help him push through (usually), and “Mom I really AM NOT going to do this now!” – which I let him win those battles. As a family therapist, I worry that Luke is going to catch on and start making everything an “AM NOT” battle, but I guess we’ll cross that bridge if we get there.

Today I called Luke’s pulmonologist about making an appointment for the next visit, since were planning on waiting to see him for the capping trial. I explained to the nurse the road we’ve been down. She was very encouraging and told me we have been doing a good job pushing and backing off as necessary. She said that some kids just don’t like change very much, but as long as he’s still tolerating his PMV, there’s nothing physically/medically concerning about his resistance to the capping. We made the pulmonologist’s appointment for Oct 12. She told me that if Luke started tolerating his cap before then, that we can still call and schedule a capping trial. So even though it’s Sept 1, we might not have to give up yet. We will also visit the ENT surgeon on Sept 27. He also has the authority to decanulate Luke, so we may have another shot with him as well.

I want to thank you all for your prayers up to now for Luke’s progress towards decanulation. Please don’t stop praying. It would be just stupendous if he could be trach-free for the holidays (and beyond!). But please also pray for David and I, especially me, that we don’t push too hard again. It is very tempting to make another hard “rush” at the Sept 27 and Oct 12 dates. We need peace whatever happens. If God says “not now”, we need courage and stamina to do this trach thing another 7-9 months.

I am so thankful to you all. I wish I could invite all of you into our home to see how Luke is grown and how he’s progressed. He is such an amazing, loving, expressive little boy. Thanks be to God who is the maker and protector of Luke’s amazing little life. Thanks for your prayers and your wonderful encouragement.

Blessings,

Rachael, David, and Luke

Up, up and away!

Luke Does OKC

*photos courtesy of Aunt Rebekah

Saturday

Listening to my baby boy experiment with his voice as he plays on the floor. Oh, sweet Saturday!

Monday

He's not even tollerating the PMV with no gauze or tape today. Losing hope for decanulation by fall, folks.

Saturday

Just installed Luke's convertable car seat. He was really too big for the carrier a while ago, but I wanted to make sure he could sit in a restaurant high chair and sit in a shopping cart before I switched over. End of an era. My question is, is Luke gonna hate me since I took away the singing frog that attached to the bar on the carrier?

Friday

It's 10:00am. Luke tolerated his PMV before he woke up this morning. He's completely taped off, although this tape is more porous than what we were using, so it's taking more layers for equal resistance. I just added another layer, and he didn't even blink. He's rolling on the floor talking. Looks like another good day in store at the Chisholm household. Capped by the end of the weekend?

Slow Progress

Hello Friends and Family

It’s been a little over a week since my last post, and our visit to Vent Clinic and Luke’s pulmonologist. I wanted to give a brief (as possible) update on how that went and where we’re headed now.
First of all, so many prayers were answered when we got to see Dr. Gelfand’s partner, Dr. Copenhaver. We have nothing against Dr. Gelfand, but have felt in the past that Dr. Copenhaver has a more optimistic and progressive style of practicing medicine. I was thrilled when I heard he was in vent clinic that day!
Luke had to get stuck several times to get enough blood for testing, but all his numbers came back just fine. His sodium was on the low end of normal 131 where the range is 130-140. I was okay with this number, because I had been a little worried that maybe the upped amount of sodium we give him each day was too much. Not the case. Everything else went smoothly, and we got to see Dr. Copenhaver.
He was pretty impressed with Luke’s progress on the modified PMV/cap. He kindly described the path that we’re on and the timing of Luke’s decanulation. He let us know that the August 1st deadline is not hard and fast. Summer lasts a long time in Texas, so as long as cold weather doesn’t come on freakishly fast, and we don’t have an early outbreak of RSV or flu season, or a wacky outbreak of something like Swine Flu, we should have all of August and into September to reach our goal. Nothing like adding on 4-6 weeks to our deadline to relieve some of the pressure. We need to go at Luke’s pace to work towards capping him completely. Once he is capped for a week straight, then we can call Our Children’s House and get Luke set up for a sleep study. I don’t know how long he’ll have to stay this time, but on the sleep study night, they will do half the night with him breathing through his trach, and half the night capped. In the morning, they will look over the results. If his sleep with the cap is comparable to his sleep without the cap, then they will move to the decision of decanulation. Everybody important will weigh in, and if everybody agrees, Luke can be decanulated right then and there.
So a week after vent clinic, where are we now? Unfortunately, we’ve been moving slower than either David or I would like, I think. It seems like Luke takes two steps forward, and then one step (or two or three steps) back. Luke has had some trouble with what seems to be allergies, which obviously makes it harder to breathe. Today he spent the entire morning just wearing the PMV with no gauze or tape. This afternoon, we’re slowly adding gauze and tape, and increasing the difficulty. We’ve had a few days where Luke has spent most of the day with the PMV completely taped. He still won’t tolerate the actual cap for very long, but the fact that he is tolerating it for even a few breaths is progress.
Meanwhile, we’re working Luke’s lungs out. He’s working pretty hard to breathe at times, but it’s like one of us increasing our cardio workouts. He’s getting stronger and stronger.
David and I sure hope to have Luke fully capped within the next few weeks. We obviously hope to be making the call to Our Children’s House by mid-August, but again, we’re forced to go at Luke’s pace. It’s so frustrating. I wish I could just explain to Luke and have him understand that if he works really hard at breathing and using his cap, we can stop trach care and suctioning forever. But he’s a baby, and so I’m forced to just plod along, taking two steps forward and one (or two or three) steps back.
Meanwhile, I think the allergies causing difficulty breathing, is making Luke scared of eating. He has thrown fits the last three times I’ve tried to feed him (speech therapist present or not) and has only swallowed successfully a handful of times. This is also frustrating.
Please continue to pray for us. Specifically, that we can make this deadline of having him capped and decanulated by the end of the summer. Pray that Luke’s breathing is eased, and that his anxiety is calmed when we use the PMV/cap. Pray for David and I that we can have stamina to finish this race, serenity to go at Luke’s pace and not to push him beyond what he can reasonably manage, and wisdom to push Luke when he needs it and back off when he needs a break.
Thanks for your continued prayers and words of encouragement.

Love,
Rachael, David, and Luke

Luke's Toddlerhood

Luke's Race to Decanulation

Hello friends. We’re facing a pretty big day on Tuesday, so I wanted to “rally the troops” again for your prayers in addition to updating you on Luke’s solid progress in the last several weeks. In Luke’s 1st year letter (that I just posted), I mentioned that Luke just had a surgery to remove a bunch of granulation tissue that was completely obstructing his airway. After the surgery, our ENT surgeon, Dr. Chung told us that Luke’s tracheo/bronchomalasia (the reason he had the trach placed to begin with) had completely resolved, and there was no reason why Luke shouldn’t be able to begin using his speaking valve (PMV), then his cap, then get decannulated (pull the trach out) all together in a matter of weeks to a few months. We were naturally very excited at this news…and naturally very disappointed when we tried the speaking valve when we got home that night, and Luke completely failed the trial. After a few days of trying and failing, David called the surgeon and told him that Luke hadn’t made any progress on the speaking valve. Dr. Chung thought that the issue might be swelling of his throat from surgery, but also told us that Luke’s airway is smaller than most babies his age (yes, it’s a developing theme). He thought it was possible that if no progress was made within a week, we would talk about airway reconstruction surgery to enlarge Luke’s airway.
We kept trying, and one day we put the PMV on and Luke began breathing through it and out through his nose like he’d been doing it his entire life. He looked at us like “what mom and dad? Why are you staring at me like that?” For the next 30 minutes or so while we drove to Mesquite to meet friends for dinner, I listened to him make baby noises for the first time since the very few cries at his birth. I was the one crying this time. Over the course of the next week or so, we battled with Luke and got him to use the PMV all the time during the day (he still had to be on the vent at night). I say battled because Luke inherited his mother’s stubbornness. Sometimes he would be okay with it, and sometimes he wouldn’t. It took several rounds one day of putting on the PMV, Luke crying, then stopping breathing, desatting, taking off the PMV, letting Luke recover, and trying again. We discovered that distracting him helped quite a bit most of the time, but whenever he would get stressed he would immediately pull at his trach. He’s gotten very adept at pulling off his PMV.
During the process of learning to use the PMV, Luke, David, and I went on Luke’s first trip out of Dallas. We drove the grueling 11½ hours to Albuquerque and back for my sister’s wedding. Luke did outstanding. Our only hang-up was that Albuquerque is about 5,000 feet higher above sea level than Dallas. Luke had to use a bit of oxygen, but had really gotten quite adjusted by the time we went home four days later. We had a fabulous time introducing Luke to all our family and friends that have been praying in New Mexico.
When we got home, we really got Luke using his PMV all the time during the day. After several phone calls and some run-around, we finally got Luke scheduled for a three night stay and sleep study at Our Children’s House at Baylor. Although David and I were dreading it, this was a necessary step to get Luke off the vent completely, even at night. We admitted Luke to OCH on a Monday morning at the end of June. Sunday night was his last night on the vent. On Tuesday night, David stayed with Luke at the hospital, and they went downstairs for Luke’s sleep study. I wasn’t there, and I’m glad I wasn’t. David told me that they had to tape diapers on my poor baby’s hands to keep him from pulling at all the probes and leads they used to measure his sleep. Luke passed his sleep study with no major problems, but we still had to stay a third night (thanks to my mom and dad who stayed with him the third night). While Luke was at OCH, his nutritionist wanted to switch him over from an infant formula to a toddler formula. We wanted to do it while he was in the hospital because of the sodium issues he had back in March. We wanted to ensure his sodium stayed stable. By Tuesday, Luke’s sodium level had been very slowly, but steadily creeping downward. They wanted to keep him one more night so that they could monitor that. By Thursday morning, we took a vent-free baby home in our new SUV (we were able to purchase a bigger vehicle for toting Luke and all his attachments around, thanks to our friends Mark and Janna Hanner). It was a good day. About a week and 6 pokes later, we got Luke’s sodium level back registering within normal limits. OCH was an all around successful stay, and it wasn’t even quite as painful as we were worried it would be.
Once we got Luke home off the vent, we started really working toward capping Luke’s trach. We at first started just trying to use the cap, cold turkey. Luke freaked out every time we tried to cap him. He would take a breath or two, but he would panic, his heart would start to race, and his o2 sats would plummet in a matter of seconds. We struggled this way for several days, and Luke didn’t seem to be making any progress. I prayed that God would give me wisdom on how to make the transition from PMV to cap smoother and easier for all of us. He gave me the idea of taping off Luke’s PMV a little at a time, to make it increasingly difficult to breathe in through the PMV. After a few days of this, the jump from taped PMV to cap was still too big. I got the idea to begin taping gauze over Luke’s PMV and increasing the gauze at intervals. This has gotten us much closer to simulating a cap without actually capping the trach. As I’m writing this today, I’ve got 24 layers of gauze taped over Luke’s PMV, and we’re slowly taping over portions of the gauzed PMV. Right now, he’s got about 1 square millimeter of gauze that isn’t taped over. For some reason, going from that 1 square millimeter of space to completely taping over it is very difficult for Luke, even though I can’t tell much of a difference when I try and breathe through it. Bottom line is that with my modified version of the PMV/cap hybrid, Luke is doing all the breathing in and out of his nose and not using his trach at all. My understanding of why Luke still won’t tolerate the cap and has a tough time tolerating the completely taped and gauzed PMV is due to the pressure that builds up in his lungs when the trach is closed off (like the pressure you feel in your ears when you roll up the windows in your car as you’re traveling on the freeway).
My ultimate hope was to have Luke using his cap like a pro when we walked in to vent clinic and his pulmonologist’s visit on Tuesday. I have the feeling that Dr. Gelfand is quite skeptical that Luke is ready to be capped and then decannulated. I wanted to “show him” that Luke really is ready. Saturday, I set out to work with Luke all day until we accomplished the goal of truly capping his trach. This goal was not met. I went to bed Saturday night and cried, because I was so certain that Luke would be able to do it, and we both ended up being extremely frustrated. Sunday, I pushed hard again, with the same result. Luke continually was pulling off his PMV and throwing it, and it was getting more and more difficult to distract him. David and I talked last night and we decided that I would quit pushing so hard. I’ve come to accept that we won’t walk into Vent Clinic with Luke’s trach capped.
So now, my request for prayers. Our nurses, who have known Dr. Gelfand very well since he was an intern ages ago, have told us that his typical MO is that if he doesn’t have a kid capped by August 1, he won’t decannulate until the following spring. He doesn’t want to take the chance of the child getting sick during cold/flu/RSV season and needing that airway. Could we live with that? Yeah, we could live with it, but I really don’t want to. I really don’t want to do nine more months of suctioning constantly, trach care, trach changes, and hauling 3 huge diaper bags wherever we go, especially not when Luke is so close to capping. If Luke could talk, he would tell you that he’s ready for trach care, suctioning, and trach changes to be over tonight!
I would ask that you all pray for a successful vent clinic tomorrow. Pray that Dr. Gelfand recognizes Luke’s progress and earnestly works with us on decannulating Luke before the fall. Pray that Luke’s airway and lungs are strong enough to do this, that God calms him when we do capping trials, and that we have the wisdom and courage to push him when we need to and back off when he needs a break. Decannulation will be a dream come true for us. It will give us so much more freedom and mobility as a family. We hope that you join us in praying that we can achieve that sooner rather than later. But as always, in whatever way God can best be served by our struggle, we pray that God’s will is done and not ours.
Before I go, I want to tell you about the strides Luke has been making since his last illness and hospitalization in March. Since then, Luke’s sternal precautions (no tummy time, can’t lift him by his arms, etc. due to his sternum being cracked for heart surgery) have been discontinued. He is tolerating tummy time much better than he did before surgery. We have added physical therapy to his schedule twice a week, and he is really responding it. His therapist works with him on sitting, standing, rolling, tummy time, and strength on all fours. He is already sitting up unassisted for as long as he wants to. He is gaining strength, and I know that he’ll be crawling before long.
Before Luke’s sodium crashed in March, he was eating a whole jar of baby food in one sitting, and we were well on our way to having him take all of his nutrition orally and getting rid of the feeding tube. After his sodium crashed, Luke forgot how to swallow food (he has no problem swallowing saliva). We’ve been fighting tooth and nail since then for every swallow of food. This week we have finally started to see some significant progress in this area. We have been working diligently on feeding Luke orally while he’s getting fed through his feeding tube so that he begins to make the association of eating with becoming full. Using my PMV/cap hybrid, Luke’s swallow has become much stronger, and feeding him is a little less of a struggle. We’re beginning to figure out the pattern of give and take that is most effective for Luke to make progress.
Luke is growing so big! He weights about 22-23 lbs. I’m ready for him to start walking so I don’t have to carry him everywhere, he’s so heavy! He sleeps through the night, about 11-12 hours. Since getting off the vent, he uses what’s called a trach collar at night to deliver warm, moist air to him. The combination of trach collar at night and PMV/cap during the day has significantly reduced his secretions, so we’re not suctioning as often. He hasn’t used oxygen at all (except when we visited Albuquerque), since about mid-April. From a cardiology standpoint, he is exceeding Dr. Kao’s expectations. We saw her in June, and she doesn’t need to see Luke again until September. He really is improving every day. He smiles often, and loves his toys and watching his videos. He’s starting to bop up and down when he hears music he likes. He tastes everything. He is experimenting with his new found voice, and most of those experiments come out sounding like growls. Yesterday at church he really started to figure out how to vocalize through his mouth (as opposed to “humming” through his nose). He grins at us every time we walk in the house or we’ve arrived somewhere and open the car door. He amazes me that after everything he’s been through, he always has something to smile about. It makes me appreciate life, my son, and God’s infinite grace.
Thank you all for your prayers, and your constant support and encouragement. We’re still on this long journey. If it weren’t for you, we might have failed long ago. Thank you for lending us your strength and praying on our behalf. We love you.

Rachael, David, and Luke

Sunday

Luke's speaking valve is completely taped over. He wouldn't tollerate the cap. I tried it, and I can tell a very slight difference between the taped valve and the actual cap. There is some "give" to the taped valve whereas there is absolutely none with the cap. So now what? Add more pieces of tape? Geeze...

Luke's 1st Year Letter

(I know that this is way past due...I wrote this for Luke right after his 1st year birthday party, but never got around to posting it. Thought you ought to read this one before the next one that I'm about to post. --Rachael)

May 27, 2010
Dear Friends and Family –

Look who just turned one year old! Wow, what an adventure this first year has been for me and my parents! The last time I wrote you a letter, I had just come home from the hospital for the first time, and I was four and a half months old. A lot has happened since then.
Once I finally got home in October, I got to stay home for about three and a half months. When I was eight months old, my heart doctor, Dr. Kao, told my Mamma and Daddy that it was time to start thinking about my second heart surgery. She had me go in to the hospital to make another movie of my heart. The night after I made my heart movie, I got very sick with a virus called CMV. Even though I was only supposed to spend one night in the hospital, I had to stay a couple of weeks.
Finally, my Mom and Dad got to take me home, but not for very long. Before even a day had passed, they decided that I was still too sick to be home, so they took me back to the hospital. That was a very scary trip, because my oxygen got really low, and I had another seizure. I stayed in the hospital for about another week before I went home again. This time I got to stay home for awhile, but my heart and lungs never worked as well as they did before I got CMV. My mom and dad were tired and scared because I had to work really hard to breathe and get the oxygen that I needed. Before I went into the hospital to make my heart movie, I was just about ready to breathe on my own all the time without the ventilator. After I got CMV, I had to use the ventilator again almost all the time.
About two and a half weeks after I got out of the hospital, my Mom, Dad, and Dr. Kao decided it was time to do my next heart surgery, even though they would have rather waited until I had gotten all the way well from having CMV. So I went back to the hospital, and they scheduled my surgery for about five days later. God took very good care of my family during this time. Just a few days before my surgery was scheduled, God revealed to the doctors that I had another infection. The doctors told my parents that if they had done my surgery while I had an infection, I probably would have died. I ended up having pneumonia, and I had to wait about four weeks before I had my surgery. During that time, my lungs got very, very sick. The doctors had to hook me up to a machine that gave me a gas called Nitric Oxide that helped my lungs get more oxygen in them. They had to make it so I was asleep and extremely still all the time.
Finally I got better from pneumonia, and I got to have my second heart surgery. Since the recovery from my first surgery was so difficult, my parents were very scared that this time might be the same. When my Mom left me to wait for my surgery to be over, she kissed me and told me not to do any funny business. I didn’t! God took such good care of me! My surgery went very smoothly, and I got to go straight back up to my room. I didn’t have to go on ECMO or anything! All the doctors (and my Mamma and Daddy) were amazed at how well I did through my surgery and recovery. Part of that day was sad though, because I had to say goodbye to my neighbor in the next-door hospital room. She went up to heaven about an hour after I got back from my surgery. My parents were very sad for that baby girl’s family, but also very relieved that I didn’t go to heaven too.
I got to go home only 10 days after my surgery this time. But only a week later, my parents had to take me back to the hospital because I was acting very strangely. The doctors discovered that the sodium in my body was very low. It was so low that I would have died if they didn’t get sodium back in my body very quickly. I had to stay in the hospital for almost two more weeks after that. Even though the doctors ran tests and didn’t see that my brain had been damaged, I took some steps back in my development, especially in how I eat. Before my sodium dropped, I could eat a whole jar of baby food every day. But now, after two months of hard work, I can only swallow a little bit of cereal.
Just about a week ago, I had to go back to the hospital to have a whole bunch of tissue removed from my throat. The doctor took it all out so that I can breathe out of my nose and mouth instead of using my trach to breathe out. The doctor says that my airway is really small, and I might need to have another surgery on my throat to make it bigger so I can breathe without my trach someday. I hope everybody prays that God will make my airway bigger so I don’t have to have another surgery.
Right now, I’m doing really well and having a lot of fun. I weigh 22 pounds! I still get almost all of my food from my feeding tube, but I’m working really hard on learning to eat solid food again. I only use my ventilator when I’m sleeping at night, and I’m about to get rid of my ventilator completely. I can sit up by myself for just a little while without falling over, and I love sitting and playing in my Jumper or my Exersaucer. My Mamma says she thinks I’ll crawl before too long. Even though I hate to be on my tummy, I’m getting really good at pushing my head up. I used to have to be in my crib all the time, but now I spend almost all day up and about. I even get to go to church every Sunday now. I’ll be leaving soon to go on my first trip out of Dallas. I’m going to my Aunt Hannah’s wedding in Albuquerque. I can’t wait to meet all my friends and family that have been praying for me over there.
A lot of very hard and very amazing things have happened this year. My parents hope that a lot of very good and very amazing things happen this coming year. I want you to know that my doctors have been working really hard to make me well, but even fantastic doctors like mine can’t do everything. God is really the person who is making me well. I want him to have all the credit. God has helped my family through so much. We have learned to rely upon him and take each day one at a time. We are so thankful to be a family at home all together.
Thank you for praying for me and my family. I get better and better every day, but I still like it that you pray for me. My parents still need a lot of encouragement because I need extra special care. Thank you everybody! I hope that God blesses you like he has blessed us!

Love,
Luke

July 4th

{photos courtesy of Aunt Rebekah}

Thursday

Home with a vent-free baby about 10:30 this morning. We successfully changed him over to toddler formula, increased his sodium, decreased his use of the pulse ox from constant to intermittent, and decreased his breathing treatments to 4 times a day to 3. We also received a cap for his trach. While we haven't tried it on him yet, we're excited to be moving him forward. Thank you for all your prayers.

Thursday

Home with a vent-free baby about 10:30 this morning. We successfully changed him over to toddler formula, increased his sodium, decreased his use of the pulse ox from constant to intermittent, and decreased his breathing treatments to 4 times a day to 3. We also received a cap for his trach. While we haven't tried it on him yet, we're excited to be moving him forward. Thank you for all your prayers.

Wednesday

Luke had a rough night last night due to all the equipment they used to measure his sleep, although he passed the sleep study and will be returning home tomorrow without a vent. However, we are changing him over to a toddler formula and his sodium levels are slowly, but steadily declining, so they're keeping him one more night to see what we need to do to keep his sodium stable.

Tuesday II

Luke is slowly discovering how to make noises with his voice. He has been growling for the last 45 minutes while lying in his crib examining his tiger ("Hobbs"). Yes growling. That's the only way I can describe it. It is really cute.

Tuesday

Luke's sleep study got moved up from tomorrow night to tonight. We're hoping that discharge might be moved up as well, but nobody's made any committments. So far, Luke is exceeding their expectations. He's hanging out just like normal and still using his speaking valve all day. Thanks for your prayers.

Monday Night

Just got Luke settled in for night 1 of 3 at Baylor. He's doing just fine, though a tiny bit hyper and fussy due to being in different surroundings. I don't expect to get a lot of sleep tonight, but so far it hasn't been as bad as I was dreading, but then, we're only 11 hours in. I'm remaining positive and expecting everything to go smoothly for Luke's first night vent-free.

Monday

Headed off to Our Childern's House in a few hours. Dreading going, but can't wait to return on Thursday morning with a vent-free baby and a new SUV.

Wednesday

Luke is scheduled for his three-night vent weaning at Our Children's House at Baylor starting Monday. We are thrilled to finally be getting rid of that hunk of metal, but dreading returning to Baylor - however short the stay. Please pray that all goes smoothly, that we keep our sanity through this week, and that Luke doesn't take any steps backward from using his speaking valve while we're there.

***************************************

Guess who wore his speaking valve from before he woke up this morning, all the way through Physical Therapy, all the way through Speech Therapy, AND ate a whole cup of cereal? Yup. It was Luke! Hard work is paying off!

Monday

Took Luke to the cardiologist today. Other than slightly weaning one of his anti-arrhythmic drugs, she didn't change anything. She said Luke's doing great, and she doesn't need to see him for 3-4 months. On another up note, Luke's used his speaking valve for several hours today and a David made him eat a whole cup of cereal. Progress.

Reid Elley

Please pray for my friends Kristen and Chad. Their nine month old son passed away today after getting an infection after his trach surgery. His parents never got to take him home from the hospital. Please pray for them as they deal with this terrible loss.

Reid's Blog

Saturday II

Luke's had his speaking valve on for most of the day since about 9:40. We gave hiim a break for about an hour after his nap. All three of us have suffered through crying, coughing, suctioning, and recovering. Our hope is that if we can help him master it today, he'll be able to use it around the clock in the very near future. Our desperate desire is to have Luke decanulated by the fall.

Saturday

Luke's had his speaking valve on for over an hour today, minus a few minutes here and there to suction and let him recover his sats before putting it right back on. He's protested periodically by holding his breath, but Mamma and Daddy are waiting him out by distracting him until he forgets again that he has it on and starts breathing normally.

Thursday

Pssst - Luke is sleeping with his speaking valve on. Don't tell him!

Prayer Warriors

Please pray for my friend's baby Reid. He got his trach surgery a week ago, got an infection, and is really struggling to stay alive. Please pray for him to turn a corner and start getting well. Pray for strength for his parents.

Reid Elley's Site

Monday

Thank you for your prayers. We put Luke's speaking valve on him today to see what would happen. He breathed in...and out through his nose like he's been doing it his whole life. He looked at us like "Why are staring at me?" He used his valve with absolutely no trouble. We put it on for about 20 minutes this evening. I cried as I listened to my son make happy noises. Praise God! He is awesome and faithful.

Prayer Warriors, We Need You Again

You have probably seen little FaceBook status posts, but I wanted to write a note about what’s been going on with Luke in the last few weeks.
At the beginning of May, we visited Luke’s pulmonologist, Dr. Gelfand. During this visit, we discussed with the doctor plans for Luke’s progression. The doctor discontinued three of Luke’s medications (two narcotics and one antibiotic which was causing major diaper rash), spread out Luke’s breathing treatments from every four hours to every six hours, and told us to drop Luke’s 4 am feeding. All of this makes caring for Luke quite a bit easier. We also discussed getting Luke off the ventilator completely. Since Luke’s last stay in the hospital, we have weaned him back down to only being on the vent for 8 hours at night. To get Luke off the vent, we will have to admit Luke to Our Children’s House at Baylor for a three night study. For those three nights, Luke will attempt to sleep without a ventilator while the professionals keep his breathing effort, blood gas, etc. monitored. The hope is at the end of the three nights, we will bring Luke home without the need for a vent at night. We will still have to keep the vent at the house for awhile, just in case, but he won’t use it. I’m planning to put a real toy box in that space. We also mentioned to Dr. Gelfand our concern that Luke hasn’t been able to use his Passy-Muir (or speaking) valve (Passy for short).
Short anatomy lesson: Normally, a person takes in air through his nose/mouth, the air travels through the trachea, into the bronchial tubes to inflate the lungs. Inhaling creates negative pressure in the airway. When Luke breathes in the same way, the negative pressure is too much so that his “floppy” trachea and bronchial tubes collapse (called tracheal and bronchial malasia). In the past, Luke’s ventilator has blown air into his airway, using positive pressure to keep his airway open. We were told back in July that Luke’s airways would eventually mature and harden, outgrowing the need for a ventilator and a trach. It’s a little confusing how Luke can outgrow the need for a ventilator, but still need a trach. Think about how relatively tiny your nostrils are. Breathing through your nostrils creates much more negative pressure than breathing through a tracheostomy tube (trach) does. Much the same as if you tried to breathe through a drinking straw versus breathing through a PVC pipe.
A trach is inserted into a person’s throat (trachea) below the vocal chords. In order for a person’s vocal chords to work and make sounds (talking, crying, etc.), air must travel over them. With Luke’s trach, air goes in and out of his body through a hole below the vocal chords, eliminating the possibility for air to travel over them, thus disallowing him to vocalize. A passy is a small valve that you place over the end of the trach. It allows Luke to breathe in through his trach, but air only goes one way; it can’t get out through his trach. This forces Luke to pass air through his trachea, around his trach, over the vocal chords and through his nose/mouth. Since he then passes air over his vocal chords, he can vocalize – babble, grunt, cry— audibly. Our concern has been that we have been trying to put the Passy on, but Luke does not expel air through his nose and mouth like he should. He can’t exhale. He struggles, and cries, and gets mad, but no exhaling, and no vocalizing. A few times he was in such distress that he blew the Passy valve off the end of his trach so that he could exhale (not an easy thing to do). Dr. Gelfand said that it was likely that Luke had built up tissue (called granulation tissue) around his trach in rejection of a foreign object (not uncommon), and that tissue was likely narrowing his airway. The only way to know for sure is to have our ENT (Ear, Nose, and Throat doctor), Dr. Chung, look with a scope.
Last Friday, we consulted with Dr. Chung. He couldn’t do a scope in his office, so we scheduled the procedure for Wednesday the 19th. Dr. Chung told us that the most likely reason Luke hasn’t been able to pass air around his trach is that indeed there is probably tissue blocking his airway. If that was the case, Luke would already be under anesthesia for the scope, so Dr. Chung would laser out the tissue right then. So Wednesday we took Luke to Medical City at 6:30 in the morning. The plan was to have Luke’s procedure done (the nurse told me the OR was slated for 45 minutes for Luke’s procedure), take him to recovery, then back up to the pediatric floor (not the PICU) for a few hours, and then have him discharged that same day. We did not tell Luke the plan for the day, because he has a tendency to change the plan, especially when it involves going home from the hospital. We packed his ventilator, some toys, and other things, just in case we had to do an overnight stay.
Things went surprisingly smoothly. We got updates from the OR throughout the procedure. The anesthesiologist had trouble getting an IV in Luke, but that didn’t surprise us at all. He really is a tough stick. So 45 minutes after he went back to the OR, the procedure got underway. Two and a half hours after Luke went back to the OR, Dr. Chung came out to talk to us. He told us that he had indeed found a large mass of granulation tissue that was completely obstructing Luke’s airway. Dr. Chung could not use a laser or a scalpel to remove it, so he ended up having to pull away chunks at a time until it was cleared. He told us that Luke should now have no problem using his Passy valve and breathing around his trach. We told Dr. Chung about the plans to get Luke off the ventilator. Dr. Chung said that if Luke had no more use for a ventilator, he shouldn’t need his trach either. There should be no reason why we shouldn’t be able to cap his trach (forcing Luke not to use the trach at all and breathe both in and out through his nose/mouth), and then decanulate (remove the trach forever) in a matter of weeks. Despite ourselves, our hopes skyrocketed. I think both of our thoughts raced to a place where we no longer have to deal with trach care, suctioning, nursing, and carrying at least 3 bags wherever we take Luke. Neither one of us expected that decanulation could come so soon.
Dr. Chung took us back to see Luke immediately. He was awake, but extremely fussy, and we worried about how much his o2 sats were fluctuating. We were able to take Luke off of oxygen about a month ago, and he has been satting high 70%s to low-mid 80%s even without oxygen. When we got back to him after his surgery, his sats were fluctuating between low 60%s to mid 70%s. After about an hour in the recovery room where we got to start feeding Luke slowly, we went up to the pediatric floor. As the day wore on, we continued to worry about his lower saturations. Eventually we asked for Luke to get a blood test (BMP) to check his sodium and other levels, mainly as confirmation that we could take him home. When the nurse called the doctor to ask for the order, he decided he would just admit Luke for the night because of his lower saturations. We then told the nurse that we weren’t sure if we needed to admit him. Dr. Stromberg from the PICU came down about an hour later and examined him. Luke was then beginning to sat in the mid-high 70%s, hitting 80%. Dr. Stromberg said that as long as Luke was returning to his baseline sats, he was okay to go home. We left the hospital about 5:00 the same day Luke had his surgery. That in itself is amazing. We thank all of you who prayed for us and for Luke on Wednesday that he wouldn’t do any “funny business.” He didn’t, and we are thrilled that something finally went as planned for once in Luke’s life.
So why the need for prayer beyond the usual? That night curiosity got the better of us, and we tried the Passy valve. After having our hopes up so high, they crashed down. Luke failed his Passy trial. Moved zero air around his trach, turned blue, exactly the same as he did before the surgery. We had no idea why he failed, but we decided to try again the next day before we got too concerned. Thursday’s trial brought the same failure. I had been so excited with the thought of moving so quickly towards a normal life with Luke, and discouragement overwhelmed me.
On Friday David called Dr. Chung to tell him about the trial failures. Dr. Chung told David that the problem obviously isn’t more granulation tissue grown up, because he removed it all, and it seemed to him during the scope that Luke’s malasia (floppy airways) really has pretty much resolved itself. He said that the thinnest part of a person’s airway is a cartilage ring. Luke’s is particularly small. It could be that swelling from the surgery has caused Luke’s airway to close in that area, and the swelling needs to go down before he can use his Passy. Or, it could be that this section of Luke’s airway is just too small to pass air through, period. In that case, there is an ENT surgical group out of UT Southwestern that specializes in airway reconstruction surgery for pediatric patients. The surgeon would perform a fairly extensive operation in which he would cut the cartilage ring and then enlarge it, thus enlarging Luke’s airway. Or, we may just have to wait for Luke’s airway to mature and open.
So we are asking for your prayers that God gives us option #1. We are desperately hoping and praying that Luke’s airway is swollen from surgery, and once the swelling goes down, he will be able to use his speaking valve with ease, and subsequently cap his trach and then decanulate him as the ENT predicted. We long to hear Luke’s voice babbling, and yes, even crying. We long for the day we can de-clutter our lives filled with nursing, trach equipment, suction, and trach care. We believe God can answer this prayer for Luke’s airway to heal and work properly. Indeed, he has even started to answer this prayer. Today, before I got a chance to write this, we heard some of Luke’s first vocalizations. Today, while we haven’t done a Passy trial, he has been able to force big coughs around his trach. His big coughs sound like little squeaks as the air travels over his vocal chords. Each time this has happened, David and I look at each other with doubtful hope. “Did you hear that?” we ask each other. We want it to be true, but we don’t want to get our hopes so high and then have them come crashing down again. It’s easier just to be cautiously optimistic.
Pray with us that over the next few days, if Luke’s airway is indeed swollen, that the swelling continues to go down. Pray that God opens up Luke’s airway enough for normal function. Pray that God does something awesome, and that our family is released from the bondage of this trach in the near future. You and I have sat back and watched as God did much mightier deeds than this in Luke’s life.
Thank you all for your prayers and support. You all hold the three of us up and give us more strength than you realize.

Blessings,

Rachael, David, and Luke