Merry Child

Thanksgiving 2011

*thanks Aunt Rebekah for the pictures!*

Fall 2011 Trip to the Arboretum

"Fall 2011 Arboretum"

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Luke's World (pics)

"Luke's World"

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Luke’s Tonsillectomy and Other Updates

I apologize for the length of time in between updates.  I kept waiting for something really big and decisive to happen so I could group everything into one update, but it seems like we’re a family destined to live with more than our share of ambivalence. 

It looks like I wrote the last long update in July after a bronchoscopy.  We still had strong hopes for getting Luke capped around the clock, past a sleep study, and to decannulation by the end of September.  Believe me, if that were still the course we were on, you would have heard about it by now. 

In mid-August, we took Luke to his ENT appointment to do the “soft scope” to check out the damage the scar tissue could be doing to Luke’s vocal chords.  Dr. McClay ruled out the scar tissue preventing Luke from using the cap.  At that time he decided to see if removing Luke’s tonsils and adenoids would open his airway enough for him to tolerate the cap.  We booked surgery for two and a half weeks later to allow Luke to be off of his aspirin regimen before surgery. 

Dr. McClay removed Luke’s tonsils and adenoids on Aug 29.  The surgery was successful, although Dr. McClay noted that there is still some floppiness in the airway below the reconstruction that hasn’t seemed to improve significantly, even with wearing the cap up to 9 hours a day.  The surgery was otherwise uneventful. 

We had planned that day to have them keep Luke overnight for observation, but were a little surprised when they told us they’d sent him from surgery to the Cardiac ICU.  We used to go there routinely after Luke’s bronchoscopies, but they had been sending him to the regular cardiac inpatient floor after procedures for some time.  When we were able to go back and see him, we were shocked and scared to see him on a ventilator and o2.  The nurses told us that he had stopped initiating breaths when coming out of anesthesia and had been desatting (low o2 level in the blood).  They felt they needed to put him on a ventilator to help him wake up from anesthesia.  Luke was very obviously struggling even with the ventilator.  David told them that Luke used to “fight the vent” when he was on it at home.  Basically Luke would push against the vent instead of allow it to give him breaths.  He would wear himself out that way, then do fine when we disconnected the ventilator.  The nurses graciously listened to us, and we took Luke off the vent, but his o2 sats didn’t really improve.  For about 30 minutes, it was very scary while David and I stood by his bed.  We had to keep rousing him to remind him to take a breath because he would just forget.  Gradually his sats improved, and although Luke still slept, he was out of anesthesia, and we weren’t quite so concerned.  We decided that my mom (who was visiting for a few days) and I would stay with Luke in the ICU and David would go home so he could work a little in the morning.  We had a really rough night managing Luke’s pain, but we didn’t have any life threatening scares.  We were home before Sesame Street the next morning (fastest discharge from the ICU ever)! 

The next few weeks crept along slowly.  We were cautious beginning to use Luke’s speaking valve or cap, worried about swelling and throat soreness.  About a week after surgery, Luke’s speech therapist, Cherish, was able to get his cap on no problem during a feeding session.  That helped us cross the threshold, and we were able to get his cap on for increasing amounts of time in the following weeks.  Only once though was I able to get Luke to sleep with the cap on during his nap.  He wouldn’t fall asleep with it on as he had before, but I had to slowly cover his trach after he fell asleep until he was breathing through his nose and mouth, then I placed the cap on.  He slept that way for about 25 minutes, and it was a struggle every single second.  He repeatedly roused and pulled off the cap, and I had to repeat the process every time.  It was very apparent that he wasn’t breathing anywhere close to comfortably.  Probably even more concerning was the period of time in which I was working on helping him to fall asleep with the cap on.  He cried and cried, which is pretty standard for him, but this time we had his pulse ox on him.  He desatted into the lower 60%s during the meltdown before he fell asleep.  David and I both feel that Luke should be able to maintain acceptable oxygen saturation during a crying spell with the cap on.  We’re still at a loss as to why this is happening. 

So the maximum time we were able to get Luke to wear his cap in the days leading up to his post tonsillectomy follow-up with the ENT was about 6 hours off and on (not continuous) and no sleeping with the cap.  Going in to the appointment, we didn’t have high hopes for getting a sleep study scheduled, but we probably weren’t quite prepared for the response we got from the doctor during the visit. 

We explained our successes and failures using the cap the last three weeks.  Dr. McClay basically said that he didn’t understand why Luke is not able to tolerate the cap better.  He told us that he had seen two kids with airways worse than Luke’s this summer, and one was decannulated and the other was capped around the clock.  He snuffed out our hopes for decannulation before fall by saying, “Well, it’s not going to be this year…”  He said there was nothing more surgically that he could do for Luke, and that we will have to figure out when Luke is pulling off the cap because he wants control and when he does it because he isn’t able to tolerate wearing it.  I wanted to say, “Hello!  That’s been the problem for over a year!”  He seems to appreciate the problem of trying to make a two year old do what he doesn’t want to do, but didn’t supply any help or solutions for solving the problem.  McClay wants to see Luke in December, just to see how it’s going.  We left pretty discouraged.  I cried.  David and I talked on the way home from Plano.  We’re both disappointed that we have to wait for yet another spring before we can get rid of the trach, but somewhat relieved that we have a final answer for the season.  The pressure’s off.  No more scrambling to make him wear his cap before the fall hits.  

That afternoon, I felt more and more agitated.  I believe strongly that Luke doesn’t deserve to be given up on like I felt Dr. McClay was that afternoon.  I called Luke’s pulmonologist, Dr. Copenhaver.  I had to leave a message, but felt better when his nurse called me back within the hour.  She listened patiently as I told her about McClay’s conclusion.  I told her that I was seriously considering taking Luke down to Texas Children’s Hospital in Houston, where they have two ENTs in the top 1% in the country for a third opinion.  She told me that she understood and that she would consult with both Dr. Gelfand (Copenhaver’s partner) and Copenhaver when he got back from out of town the next week.  Dr. Copenhaver called me several days later and listened to my concerns himself.  It was several weeks before anything happened, but Dr. Copenhaver spent the time talking to several other physicians getting multiple opinions. 

Finally, about 5 weeks after my initial conversation with the nurse, Dr. Copenhaver called David.  He told David that he strongly believed that we would get no different information or plan of action if we took him to Houston.  Luke’s condition is bewildering, but it indeed seems that there is not surgical treatment available to help Luke tolerate his cap.  At this point, it seems that Luke and his airway just need to get bigger in order for him to be capped comfortably and for us to eventually be able to decannulate him.  Copenhaver instructed us to begin a new breathing treatment regimen, a steroid called Atrovent, which can possibly strengthen the floppiness in his airway.  In addition, we are not to push Luke wearing his cap to the point of discomfort. 

So we began this new breathing treatment about a week and a half ago.  So far, we can’t tell any significant change in Luke’s tolerance of his cap.  The most he’ll wear it is for a few hours each day, off and on.  So, on this front, we’re just trying to maintain and get Luke through the autumn/winter. 

There is no guarantee that we’ll get his trach out this spring.  You may remember that Luke has one more heart surgery which should take place around age 3-4.  It’s possible that he could be scheduled for surgery this summer (2012) or next.  Dr. Kao isn’t in a hurry and believes we may be able to delay it even further if we want to.  She would prefer to have Luke’s trach out before his last heart surgery.  It all depends on how quickly Luke grows and how his o2 saturations hold up to his growth.  When his sats start trending downward again, it will be time to start thinking about surgery. 

You also may have heard that Luke had another procedure done in August.  After Luke’s July broncoscopy, I was playing with him and noticed for the first time that his left thumb didn’t seem to be able to straighten.  The thumb was fixed at a ninety degree angle.  I took him to the pediatrician who referred him to an orthopedic surgeon at Children’s.  When we saw Dr. Ho, she confirmed that the condition, called trigger thumb, was not serious, but it would need minor surgery to correct.  She did surgery the morning of August 17th.  Luke recovered well and we were home before noon that day.  The worst part of the whole episode was that after surgery Luke had to wear a cast keeping his elbow bent at 90 degrees for two weeks in order for the tendons in his thumb to heal correctly.  Luke wore his cast like champ and didn’t let it slow him down at all.  Once the cast came off, it was evident that his thumb healed remarkably well, and is now fully functional.  Luke’s thumb problem had nothing to do with his other medical conditions whatsoever.  Sometimes, this just happens in kids’ digits. 

In other news, it has now been two years since Luke starting getting speech/feeding therapy from our beloved speech therapist, Cherish.  She is very skilled and works very hard with Luke.  However, we are still not seeing the gains in his eating skill level that we would like.  Part of that is my fault.  I’m sure all of you who are parents can appreciate the energy it takes to feed a two year old that doesn’t want to eat.  Most days, it’s just too much of a battle to attempt to feed him a few ounces of pureed food.  Luke’s into hitting these days, and food gets everywhere on top of crying fits and battling a trach cap.  I’ve completely fallen out of the habit of feeding him on my own and lately have just relied on Cherish to feed him on the days she comes to our house. 

We’ve recently decided to follow the recommendations of Luke’s nutritionist and sign him up for an intensive feeding therapy program at our Children’s House at Baylor.  This decision was certainly not made lightly.  It’s a huge time commitment and it will take place at the main campus of our Children’s House at Baylor.  David and I still dread any time we have to visit there, so being there every day for weeks on end will be very emotionally challenging.  I haven’t gotten all of the details of what the program entails, but here’s my understanding so far.  After his evaluation with the program’s speech therapist, occupational therapist, and psychiatrist in February (there’s a very long waiting list for the evaluation), he will likely be referred to the OCH day patient program.   This I think will consist of Luke and I heading to OCH every day, Monday-Friday, for a four-five hour period in which he will be fed multiple times in addition to participating in other speech/oral exercises and occupational therapy. 

I know this update is already quite long, but let me take a few minutes to talk about Luke’s progress in other areas as well as how we’re doing as a family.  Luke is now 27 lbs 8 oz and 35 in long (long torso, short little legs).  He’s mostly wearing 18-24 month pants and 18 mo – 2T shirts.  Now he’s not just walking, but running.  He’s SO FAST.  He’s getting into everything more than I thought possible.  Our living room is a perpetual disaster area (see pictures in the most recent photo album I posted).  Luke climbs on anything he can get his hands on.  The other day, I found him sitting in the middle of the dining room table.  Luke also likes to push over furniture (I think it makes him feel powerful, and he likes to hear the noise).  So our end tables and dining room chairs are always turned on their side or upside down.  I’ve learned that it’s futile to turn them upright again, because as soon as I do, he makes a beeline for the furniture and pushes it over again.  He has been able to say a few words with his voice including “up-uh” (“up”), “awahwahwah” (“water”), “I-deh” (“I did it”), and “adah” (“dad”).  Sunday I successfully taught him to make the “mm” sound, but no success yet with “Mamma”.  David has gotten Luke to peepee in the potty a few times before his bath (very exciting).  We’re not officially potty training, but getting Luke used to the idea of where his potty should go.  Our plan is to take a very relaxed approach to potty training and let Luke tell us when he’s ready.

Luke still loves letters and words.  I think thanks to LeapFrog toys and Sesame Street, Luke can identify all of the letters of the alphabet with about 95% accuracy (with the occasional mix-up of a Q and a O or an L and a J).   When we brought Luke home, we purchased for him the Your Baby Can Read program, and he’s been watching those videos 1-2 times a day since then.  Just a few weeks ago, Luke started making significant progress.  I now have a two year old that has learned about two dozen sight words and can sign or point to words like “spider,” “nose,” “ears,” “look up,” “arms up,” etc.  It is so awesome to watch.  For so long, David and I were so concerned about Luke’s brain and intelligence due to his multiple seizures and his sodium deficiency at 10 months old.  We are convinced that Luke’s brain is right on track, and we praise God for it every day. 

Luke has made significant progress in his fine motor skills under the tutelage of his new occupational therapist, Brooke.  He sees her twice a week back to back with his physical therapist, Erin at Our Children’s House in Rockwall.  The combination of these two therapies has helped Luke really improve in core strength and fine and gross motor skills.  We couldn’t be happier with that area.  He’ll be caught up to age appropriate skills in no time. 

This past week we visited Luke’s nephrologist (kidney specialist) and neurologist (brain specialist).  The nephrologist discontinued Luke’s sodium supplement that he’s been receiving three times a day since his sodium issue at 10 months.  He ordered blood work to be done to check his sodium level five days after the discontinuation.  Dr. Quan called me yesterday to report that Luke’s sodium level is holding steady, and also that his kidney function is much improved since he saw Luke over a year ago.  It seems that Luke’s kidneys have almost completely healed from all the damage they received in his first year of life.  We praise God for his healing power.  We are waiting on hearing from Luke’s neurologist pending Luke’s blood work results to see if we can discontinue Luke’s anti-seizure medication as well.  We should know something on that front tomorrow. 

I’ve always believed that prayer works.  I’ve seen way too many miracles happen in Luke’s life to believe otherwise.  But I’ve always struggled with the idea of prayer:  God is going to do what he’s going to do, whether I pray or not, regardless of what I want, so does it really matter that I pray?  I’ve always recognized the need for prayer in my relationship with God, but I’ve always struggled to put it into practice on a regular basis.  Intercessory prayer is not my spiritual gift by any means.  Recently God has shown me a truth that has comforted and challenged me.  I realize that I may be the last Christian on earth to get this through my head, but here goes anyway:  We do not pray to try and change God’s mind.  God is sovereign and powerful regardless of whether or not we acknowledge that in our hearts and in our prayers.  We pray because the process of prayer aligns our will with God’s.   I think that most often, God chooses to act on our spirits—to change our hearts and desires instead of our circumstances—if we are open to him doing so.

I remember when Luke was three months old and we asked everyone to pray that God would heal Luke’s airway so that we wouldn’t have to take him home with a ventilator and a trach.  David and I both felt so defeated as we watched the tracheostomy orientation video.  But as the deadline came closer and closer and we prayed and prayed for healing, I realized that instead of God healing Luke’s airway at that time, He was gently leading me towards more comfort and less loathing of the idea of caring for Luke with a trach.  Something similar is happening now.  Am I disappointed that we couldn’t decannulate Luke this year?  Absolutely.  If God offered to take his trach out tomorrow, would I enthusiastically assent?  Absolutely.  But I feel like we are no longer hanging all of our hopes and dreams on the day Luke gets that glorious plastic-ectomy.  I’ve begun to come to terms with the fact that this is how our family is, and this is how it’s going to be possibly for a much longer time.  I’ve stopped trying to predict when his trach will come out.  Although I still look forward to that day with anticipation, I’m not franticly trying to rush the process as I’m guilty of doing for so long in the past.  I am much more at peace with our circumstances.  Frequently, I am tempted to pick the issue back up again and start worrying about Luke’s airway.  And that’s when I remember my friend Rona’s words as I left the PICU with Luke for the first time:  “Remember:  God is sovereign.”  So we’re going to spend at least another five months with a trach and everything that comes with it.  But I’m not any longer going to allow that fact to control my mood or attitude.  I am striving to rest in God’s timing and not fight for my own.

Thankfully, we have no medical procedures scheduled for Luke at this time.  Our plan is to keep him as healthy as possible and to encourage him in his development through the seven therapy appointments he has each week.  We’re going to enjoy spending a week in Oklahoma for Thanksgiving and a week in Albuquerque for Christmas.  We’ll attend his various check-ups through this season, and then see what the springtime brings.  We appreciate your prayers as always for sustenance, for endurance, and for improvement.  We also welcome you to spread our family’s story with whomever you will.  We believe that our story clearly tells of God’s power, sovereignty, and fervent love for his children.   We thank every single one of you for taking the time to read these updates (however long and infrequent) and for every prayer you breathe on our behalf.

We love you,

Rachael, David, and Luke

Boomer Sooner

"Boomer Sooner 2011"

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September 30th

Two years ago today, we brought my precious baby boy home for the very first time. I so treasure this day, and every one that my Treasure is in it! I love you, Lucas!

Tuesday

Up until today have only achieved getting Luke to wear his speaking valve a handful of times for a few minutes each. Haven't pushed him too hard. This morning Cherish Flanagan, the best ST in the entire world, completely bypassed the speaking valve and put on the cap with no trouble. Luke's breath sounds are still coarse, but I think we've still got some swelling/soreness going on. Praying for big strides before our ENT appointment next Friday!

Monday

Approx 2:10 pm
Luke's resting fairly easily now. No vent or fiO2. Got IV tylenol and morphine on board. Sats, hr, and respiration are good. Cranky when he wakes up every once in awhile. Otherwise we're just hanging out. Thanks for your prayers.
********************

Approx 12:40 pm

Luke's having a little more trouble than usual coming out of anesthesia. He was on a vent when we got back to see him but he's off now. Having a bit of trouble breathing and with pain, though managing with morphine and tylenol. Settling in to the ICU for a sleepover.

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

Approx 12:30 pm

Done. Luke did great. Doc didn't need to dilate the airway. Still some floppiness. We'll be in the ICU probably overnight.

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

Approx 10:30 am

Just took Luke back to the OR. Should be about an hour til he's done. Also met up with @Keri tonn and met their sweet family for the first time in the surgery waiting room. Balm for the soul.

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

Approx 9:30 am

In Pre Op, waiting to see the doc before they take Luke back

Thumb Surgery

Approx 7 am

If anyone is up and cares, we made it to the hospital. They should take us back to pre - op momentarily.

Approx 8 am

They wanted to get his electrolyte levels. Three sticks and no juice. Poor guy. They just took him back to the OR. Should be just a few minutes before he's done

Approx 9 am

Out of surgery. Did great. Thumb straitens now. No problems. Should go home today.

Approx 9:30 am

And we're on our way home! Fastest hospital visit EVER!!!

Surgery Update

Okay, hand surgery's booked for a week from today, Wednesday at 6:00am. Glad we could get it in sooner rather than later. On a down note, Luke wouldn't go to sleep with his cap on today. I tried several times, but it wasn't happening. Score today is Luke 3 Mom 0. :(

Thumb Surgery

Visited an orthopedic surgeon this morning. Luke's thumb will require surgery to correct the condition. Good news is that the surgery is outpatient and takes about 10 minutes from falling asleep to the last stitch. He'll wear a soft cast for two weeks afterward. Surgery is scheduled for Aug 18 at Legacy.

Thursday

Only took me 10 minutes total to get Luke to go to sleep for his nap with the cap on. I was shooting for 25 minutes today, but he only made it 19. I wish with all my heart that this was not such a struggle for him.

Wednesday

Meeting with a caseworker today for Luke to be reevaluated for Medically Dependent Child Program and Medicaid benefits. Please pray that Luke gets reauthorized for benefits for the coming year...and for my stress level.

The Latest Broncoscopy

We took Luke in this morning for Dr. McClay to have another look down his airway.  This was supposed to be Luke’s decanulation day, but Luke has been struggling quite a bit with the cap, especially for naptime.  We haven’t been able to get him to fall asleep with the cap on or cap him at all when he’s sleeping.  One of the requirements for getting Luke’s trach out is to have him pass a sleep study with his trach capped.   So we arrived at Children’s Medical Center at 7:00 this morning with no expectations for decanulation, but hope for the doctor to be able to give us an explanation for why it’s been such a battle to get Luke capped around the clock. 

They finally came and took Luke back to the OR around 9:30.  They called David and me back to the consultation room about 30 minutes later.  So here’s the scoop:

There are two possible physiological reasons why Luke is struggling so much:  1) There is a bit of floppiness in the airway tissue below the area that was reconstructed in May.  This floppiness could be causing his airway to constrict somewhat.  2)  Scar tissue on the vocal chords could responsible for constricting the airway somewhat.  Vocal chords open when you vocalize and close when you breathe.  Scar tissue on his vocal chords is causing the airway to be more narrow than usual, so this could be why Luke can vocalize very strongly but can still have difficulty in the breathing department.  Good news is that there was no granulation tissue present in the airway for Dr. McClay to remove (that’s a first).  There was a portion of tissue in the airway that looked suspicious, but McClay believes that this is a small area still swollen from the frequent surgeries/broncoscopies rather than granuloma.  In any case, it isn’t obstructing his airway enough to cause him difficulty. 

So what’s the plan?  First, more waiting.  We’re going to wait one month to see Dr. McClay in his office where he’ll “soft scope” Luke to discern the amount of damage to the vocal chords that scar tissue is causing.  It’s difficult to tell while Luke is under anesthesia, so a soft scope done while Luke is awake should give us more information.  Meanwhile, we have the go ahead to push Luke a little harder wearing the cap.  The hope is that air pressure created when Luke uses the cap will over time strengthen his airway and resolve the floppiness.  No one can tell us how long that will take. Again, we’re on Luke’s timeline.  Part of our problem has been wondering whether Luke throws fits when we try to cap him because he’s really having a difficult time getting enough air, or if he just doesn’t want to do it, so he cries to make us take off the cap.  Because we’ve been fearful of depriving him of air and harming him, we usually relent rather than making him cry through it.  We feel better about pushing him harder now that we know pushing him will only make his airway stronger and not torture him. 

Obviously the hope is that using the cap will help strengthen his airway, and the only place we have to go from here is up.  Stronger airway = more comfort with the cap = passing sleep study = decanulation.  We have the rest of July, August, and probably most of September before we hit a deadline.  McClay told us today that he won’t decanulate in winter.  If we can’t get it by September, there’s another option.   McClay talked a bit about a surgical procedure he can do to correct the floppiness.  This would take place in the spring and would result in decanulation during the same procedure. 

Realistically, we’re looking at possible decanulation later this summer/early fall.  It’s possible that we’ll have to wait another several months until the spring.  Meanwhile, we’ll most likely be getting to take Luke home to sleep in his own bed tonight (and us on ours!) and start with capping bootcamp again tomorrow. 

Please pray with us that we can be successful in capping, passing a sleep study, and decanulating by September.  Every day we long for the time Luke’s trach can come out, and we pray that we won’t have to wait another 8- 9 months before it can truly happen for our family.  Please pray that God gives us as Luke’s parents wisdom in pushing and challenging Luke to wear his cap without harming or discouraging him.  More than ever, we need to be firm, disciplined, and loving parents to this vibrant and willful two year-old. 

Thank you for your prayers and for waiting with us.  We truly love all of you.

Blessings,

Rachael, David, and Luke 

Saturday

It looks like the culprit for Luke's "now-you-see-it-now-you-don't"​ fever and illness Wednesday night can be attributed to that pesky top left molar choosing to make it's appearance. I think we'll be a go for Monday thanks to some Tylenol and your prayers.

Thursday

We seem to have hit a snag... Luke threw up twice last night and started running a fever about 4:00am. It seems to have gone down with Tylenol, and I just gave him formula. We'll see if he keeps it down. We need this to got away NOW so that we can continue with the next step in the process on Monday! Pray, please!

Another Issue?

It’s been awhile since I wrote a long post, so I want to ask you all for your prayers in the upcoming “Luke events”. 

We are nearing the end of what our ENT calls the “LTR (Laryngotracheal Resection = airway reconstruction) Protocol.  This protocol has included one major airway reconstruction surgery and several broncoscopies so far.  The point of this protocol is to enable us to cap Luke’s trach and ultimately get the trach out (called “decanulation”).  Based on the stories we heard from our ENT surgeon and one of our home health nurses, we expected the capping process after the LTR to be relatively smooth and easy.  This just hasn’t been the case.  We were able to cap Luke’s trach just a few days after the stint was removed from his airway on June 6.  In the past month, we’ve been able to get Luke to use the cap for long periods of time, but it’s been anything but smooth or easy. 

Luke often makes disconcerting “honking” and wheezing noises when breathing through his nose and mouth while his trach is capped.  He doesn’t always make those sounds, but they have troubled us.  He frequently pulls at his trach to communicate his discomfort, and has pulled out his trach or pulled it apart more than once, forcing us to do an emergency trach change and causing more concern from his parents.  When Luke has pulled out/apart his trach he panics and turns blue from lack of oxygen, which should not happen at this stage in the process—he should be able to get enough air by breathing through his nose and mouth with the trach non-functional.     

(After much going back and forth) We have a sleep study scheduled for Luke at the end of this week to see how he sleeps breathing with his trach vs. sleeping with his trach capped.  David talked with the ENT surgeon who explained that unless we can get Luke comfortable wearing the cap all day and at least able to sleep with it for some time during his naps, there is no reason to perform a sleep study at this time.  I think it goes without saying that Luke has to pass a sleep study in order for us to decanulate.   Luke absolutely panics when we lay him down to sleep with the cap on.  I have gotten him to fall asleep a handful of times with the Speaking valve (PMV)/cap hybrid (it’s a PMV with gauze taped over the opening to create more resistance when he takes a breath), but it’s a huge battle every single time.  Our attempts at getting him to fall asleep with the cap on, or trying to slip it on him after he’s asleep have failed miserably and ended in him panicking.  In addition, anytime we place the cap or the hybrid on him during sleep, his o2 sats decrease significantly. 

We have patiently increased the time he wears the cap by an hour each day, hoping that it’s a matter of him becoming acclimated to the cap and strong enough to breathe without the trach, but it hasn’t seemed to help on the sleeping front.

This brings David and me to believe that we are dealing with another, unknown, airway/pulmonary issue.  We don’t know what it is, but the ENT has agreed with us that it “should be easier than this.”  After working up to 9 hours wearing the cap with no results on the sleeping front, David and I are discouraged to say the least.  I hate torturing him by restricting his breathing, so our plan now is to again stop pushing hard and for the most part let Luke dictate when he wears the cap and when he doesn’t (within reason).  

Our original schedule has been to do a sleep study July 8 (Friday) and then a final broncoscopy and decanulation on July 18.  This no longer seems feasible, as we must figure out what this new unresolved issue is that is causing Luke such difficulty with using the cap.  We haven’t canceled the sleep study yet, but will likely do so after we talk with Luke’s ENT probably Wednesday if he cannot sleep with the cap on by then.  We are eager for this upcoming broncoscopy but no longer because we expect to decanulate Luke at that time.  We are eager because we are praying that God will give Dr. McClay wisdom as to what is causing our precious little boy to not be able to breathe on his own yet.  It could be that Luke’s airway has formed scar tissue or more granulation tissue.  It could be that the airway simply needs to be re-dilated.  Or it could be something completely off our radar that’s about to hit us out of nowhere. 

Honestly, I’m so tired of new issues (and the trach) that I could scream.  We just want to get this resolved as soon as possible so we can get on with our lives.  Please pray with us that whatever this issue is, it can be resolved easily and swiftly and result in Luke’s decanulation, if not July 18, then sometime by the end of the summer.  It will be very tough for us if we have to wait yet another year for Luke’s decanulation. 

We also are working on resolving a few (relatively) minor problems with other systems in Luke’s body.  In January, Luke’s neurologist referred us to a pediatric ophthalmologist because she thought she saw the beginnings of a lazy eye.  We visited the ophthalmologist this morning who had no concerns of that nature, but referred us to somewhere called the Retina Clinic to check out the slight nystagmus lingering from Luke’s hyponatremia (very low sodium level) last spring.  It’s imperceptible to us, so we’re not extremely concerned about this issue right now.  I’m relieved and thankful that we won’t have to deal with the headache of patching Luke’s eye to treat a lazy eye condition. 

We’re visiting a dentist tomorrow because it seems one of Luke’s lower molars seems to be growing in sideways.  It doesn’t seem to be causing him discomfort, but we don’t know how big of a deal to make of it.  So we’re seeing a dentist tomorrow.

Finally, after Luke’s last broncoscopy, I noticed the top knuckle on his left thumb doesn’t bend at all.  It’s fixed, and I can’t straighten it by applying pressure (as much as I dare).  I’m working on scheduling an appointment with an orthopedist to work on this problem. 

Besides working on the cap, Luke is doing great.  He now weighs about 25½  lbs. and is 35 in. tall.  He’s been walking since just before his second birthday.  He’s now walking everywhere he goes and can stand up on his own about 30% of the time.  He loves to climb.  His favorite activities include playing with Legos and opening and closing doors and drawers.  He loves letters and words.  Whenever he sees any kind of animal he enthusiastically signs “Cat”.  He loves making friends, singing “Itsy Bitsy Spider”, and taking a bath.  He still tastes everything.  He loves to throw things. 

Listing these stats gives me joy and lifts my mood.  But honestly, most of the time lately I feel very discouraged.  I make every attempt to count my blessings and give my discouragement to God to take care of, but it’s difficult after fighting these battles for so long.  I’m aware that there are people out there who have dealt with medical problems even bigger than Luke’s for much longer.  But standing here in the middle of it, it usually seems insurmountable.  It feels like we’re never going to get this trach out.  I’m tired of getting my hopes raised only to have them crash down once again.  I’m scared to hope any more.  I’m weary of dealing with the medical system. 

We’ll keep plugging along though.  God’s grace is sufficient for us.  More than anything, I want God’s timing.  We need patience and endurance from him to get us through these next days, weeks, months, and years.  Thank you for praying with us and for us.  Thank you for your words of encouragement.  For those of you who deal with us in person, thank you for your patience as we figure out how to raise this very special toddler.  Our biggest prayer is that any who encounter our family see the One who loves and sustains us. 

Blessings,

Rachael, David, and Luke

Sunday

Luke did 8 hours with the cap today. It's seems to be getting easier for him, but he's still not able to sleep with the cap on. Still having a hard time going to sleep and sleeping for more than 30-40 min with the PMV/cap hybrid. Praying we get him comfortable enough with the cap to complete and pass the sleep study Friday night.

Friday

Luke did 6 hours with the cap today. Talked to the doc b/c we're meeting more resistance than we expected. He says that Luke must wear the cap comfortably all day or there's no point in doing a sleep study. Good news is that even if we don't make the 7/18 deadline, there's still lots of summer left to decanulate. We'd love to have your prayers to get his trach out on the original date.

Tuesday

It was a really big battle, but I just got Luke to fall asleep with his PMV/cap hybrid on. All his crying broke my heart, but with some Mamma love, he finally dropped off. Satting 80%. This is a big step for him, and gives us confidence that maybe he can pass his sleep study next Friday.

Monday

approx 3:35 pm

Luke is awake, playing and doing well. They decided to keep him overnight after all just to be safe. We'll go home first thing in the morning.
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approx 12:45 pm


Luke's out of surgery. Doc removed more granulation tissue. There is some scarring on the vocal chords, but it shouldn't hold us back from decanulation July 18.
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approx 11:45 am


Just took Luke back to the OR
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approx 10:45 am


Waiting to send Luke back to the OR for his 9th broncoscopy

Friday

Not bragging or anything...well, I guess I'm bragging... Luke's been wearing his cap for 30 minutes so far, with brief pauses for suctioning and we've gotten it right back on. We're going to see how long he can go. We are SO EXCITED!

HALLELUJAH!

WE CAPPED HIM!!!!!!

Wednesday Night

Over the past two years, I have become impervious to manipulation by Luke's voiceless cry. Of course I would never ignore him if something is wrong. But now that Luke has a voice, approaching the true sound of that a normal child makes, my heart melts every time that little boy utters a sound. When he cries, I want to cry, laugh, and cheer all at the same time. I'm afraid I'll never say no to him again!

Wednesday

We are now able to use Luke's speaking valve again, and it's amazing to hear his voice after not hearing it for so long. He's doing great! Thank you for your prayers. Now we need you all to pray that he will tolerate us capping his trach tomorrow.

Monday

{approx 7:30 pm}


Waiting on a last dose of IV steroids at 8:00 before we can get home. Then, we'll all be sleeping in our own beds, praise God!


**********************************
{approx 3 pm}


Luke is awake and doing well. Cries every time he coughs because his throat hurts. Poor guy. :( Plan is to go home this evening around 6 or 7 if we don't encounter any problems between here and there.


**********************************
{approx 11 am}


Luke's out of surgery. Did great. Sats and heart rate are acceptable. Doc removed granulation tissue. Probably staying overnight.


**********************************
{approx 9 am}


They took Luke back to the OR at 9:00. Should be about an hour and a half. He'll recover in the cardiac ICU. Don't know if we'll stay overnight or not.

Fun with Paint

Luke's 2nd Birthday

*photos courtesy of Aunt Rebekah

Airway Reconstruction

I apologize for having not posted sooner after Luke got out of the hospital, but we have been so busy getting back into the swing of things back at home and work, that I haven’t had any time to sit and write.  Bottom line is that Luke is home, safe and sound, and we’re counting the days to our next surgery and ultimately decanulation.

On Saturday before his surgery, we celebrated Luke’s 2nd year with a small party at our house with our family, closest friends, and two of Luke’s nurses.  As we had started hoping months ago, Luke was indeed walking at his party, and all of our guests were so excited to see him toddling around.  He was a great host until we sang the Happy Birthday song about two hours into the party.  Luke waited until we finished singing, then burst into tears.  Loud voices still bother him when he’s tired, no matter how cheerful.  All in all it was a great celebration. 

Monday, May 9, we got up extremely early to take Luke to Children’s downtown.  We did the normal pre-op stuff, and they took Luke back to the OR around 8:00.  This time Luke was crying as they rolled him down the hall away from his parents, which did not make it easy for mom and dad.  We got updates about every hour, and the surgery was over in about four and a half hours.  Dr. McClay told us that everything had gone as planned.  He told us that Luke had two incisions, with a drainage tube at each incision.  We were very concerned that we wouldn’t be able to keep Luke from pulling at the tubes once he woke up from anesthesia. 

We finally got to go back and see him in his Cardiac ICU room about 1:30.  He certainly didn’t look his worst, but his state post surgery still reminded me of that awful moment we first saw him after his first heart surgery at four weeks old.  He was very still, and had that clear post-op goop in his eyes.  He smelled exactly like he had just come from the OR.  I had to keep reminding myself in those difficult moments that he was warm, his o2 sats were great, and his heart rhythm was stable (praise God!).  It was a pretty rough afternoon for all of us, and I cried a lot. 

Our worries about Luke pulling on his drainage tubes and IVs were unfounded.  He slept the majority of the next three days.  Plus he couldn’t access either of his drains because they were completely covered with dressings.  Before surgery, I had loaded up Luke’s birthday present table with things he could do in his hospital bed.  Poor Luke was in a lot of pain, and zonked out most of the time because of the Tylenol with Codeine.  Anytime he woke up he either wanted to watch TV or for one of us to read his favorite book (we read it so many times to him that both David and I have it memorized and can now “read” it to him from across the room).  Besides managing Luke’s pain, our biggest struggle over the next three days and three nights was suctioning.  The first four shifts, the nursing staff would not allow us to suction Luke like we have been at home.  Luke’s secretions have increased drastically since surgery, and it was extremely frustrating having to call a nurse to Luke’s bedside every five minutes (I mean that literally).  

On Luke’s actual birthday, he had a rough wake up call, as the ENT surgeons (McClay has a fellow that assisted with Luke’s surgery and made rounds with him afterward) came in early in the morning and removed his drains.  The rest of the day went without incident, and we got to celebrate Luke’s birthday with our best friends the Trischittis and some fabulous home-made cupcakes. 

Thursday afternoon, we took Luke down for his first-ever swallow study.  During the surgery, Dr. McClay placed a stint in Luke’s upper airway.  The stint makes it so the part that is supposed to close over his airway when he swallows (epiglottis) stays open.  That means that Luke is at risk for everything he swallows going down his airway (aspiration).  Dr. McClay explained that most kids aspirate, but some kids can figure out how not to aspirate.  The swallow study revealed that Luke is aspirating everything:  water and puree.  This means that for as long as he has the stint, Luke can only have clear water by mouth once a day to keep his swallowing skills sharp.  After the swallow study, the amount of suctioning we’ve been doing started to make sense:  we realized he’s been aspirating his saliva every time he swallows.  Unfortunately, that means we’re going to be suctioning a lot more frequently for the duration of the time Luke has his stint in.

Our ENT surgeons rounded again Thursday evening to talk with us about the results of the swallow study.  We were prepared to spend one more night in the ICU and then go home on Friday, but our wonderful nurse asked McClay if we could go home that evening.  He didn’t see any reason why not, so we rolled out of there at about 6:30 Thursday evening.  I think Luke holds the record for the amount of times a kid has been discharged to home straight from the ICU. 

Since we’ve been home we’ve dealt with a lot of pain and fussiness.  Luke surprised us Friday morning by reaching for his Daddy to get him out of his crib and take him to the living room.  He was really unstable on his feet the first few days home, but he’s gotten a lot stronger in the past few days.  He’s still not 100%, but quickly approaching it. 

We had a scare Tuesday night when we found a blood stain on his mattress in the middle of the night.  We finally figured out that he wasn’t bleeding from his trach.  I rocked him and gave him some Tylenol, after which he seemed pretty normal, so we decided not to take him to the ER.  I was able to present my concerns to Dr. McClay at Luke’s follow up appointment Wednesday.  The doctor said that the stint he placed tends to rub up against the epiglottis and irritate it.  Bleeding is not uncommon, and we can expect it to happen intermittently for as long as the stint is in.  I was also concerned that Luke hasn’t vocalized since his surgery, and not for lack of trying.  Dr. McClay again said that is normal, as the stint is placed between his vocal chords.  I guess I have to wait to hear that baby voice until June.  Additionally, we’re not to try to cap him or use the Passy-Muir until after the stint comes out.   

Last night we had another scare.  I was gone for “girls night out” with some friends while David kept Luke at home.  On my way home David called and told me that Luke had been bleeding from his mouth, way more than we should expect from the epiglottis irritation we now know to expect.  When I got home, Luke was still bleeding profusely from his mouth, and we were suctioning blood from his trach.  We couldn’t tell where the blood was coming from, so we were forced to assume that something had gone wrong with Luke’s stint.  We loaded him up about 7:00pm and headed to Children’s ICU.  He bled the whole way there.  We were able to get in right away, a baby dripping blood from his mouth gets people’s attention.  After some thorough examination, the ER docs found that Luke had somehow fallen and cut the skin inside the mouth where it connects the lip to the gums (frenulum).  Mouth wounds bleed a lot anyway, but add to it Luke’s Aspirin regimen, and you get a recipe for a lot of blood.  The ENT on call sent a scope down Luke’s trach and his nose to check the placement of the stint anyway, and everything looked perfect.  We were so relieved to find out that it was such a minor injury.  They wanted to keep him over night for observation, but when they found out we have home health nursing available, they let us take Luke home only two and a half hours after we walked in the door.  Everyone was so nice, we really appreciated how they treated our family. 

The worst part of the LTR process is over, so now we’re in holding pattern until we’re ready for the next step.  On June 6, Luke will have another broncoscopy in which Dr. McClay will remove the stint.  That will be an overnight stay in the cardiac ICU.  At that time we can start trying to use the Passy-Muir.  Once he tolerates that all day, we can try to cap him.  We can also return to full force with Luke’s oral feeding trials.  The hope is that once he figures out that it’s safe to swallow again, his eating skills will improve dramatically because he has a much bigger airway, and swallowing food will be much more comfortable.  On June 20, Luke will go in for another broncoscopy for the doctor to check for scarring and make sure everything is healing correctly.  That will be another overnight stay in the cardiac ICU.  On June 25, Luke will have a sleep study to see if he’s able to breathe with his cap on his trach through the night.  I particularly need your prayers for this one.  Luke’s only other sleep study was particularly hard on him, and it was hard for his Daddy to watch.  Since the sleep study is on a Saturday night – Sunday morning, it’s Mamma’s turn to be with Luke through the sleep study.  I need peace and fortitude to help Luke get through this necessary step in the process.   If all the previous steps in the process go as planned, Luke will go in for a final broncoscopy and trach removal on July 18.  That should be the final step, and Luke should come out of that OR a trach-free kid!

We thank you all for your continual prayers.  We ask you that you pray for the next few weeks that Luke will stay healthy, that we as his parents have endurance to get to the finish line, and that we don’t have any more emergencies between now and decanulation.  We love you all and praise God for your presence in our lives.

Blessings,

Rachael, David, and Luke

Thursday

We had a better day yesterday, and today Luke is continuing to improve. Still sleeping a lot and managing pain. Swallow study today at 1:00. Pending those results, we'll head back home tonight or tomorrow. Thanks for your prayers

T-W-O

Wednesday

Luke had a pretty good night. Awesome nurse who stayed on top of his suctioning so he could rest. Already got the drains out from his neck and side early this morning. Found out he's still on a little o2 (I thought he was off, but he wasn't). Swallow study some time today. Happy Birthday Sweet Baby Boy!

Tuesday

{approx 9:45 pm}


The last half of today has been rough. Lost an IV. Copious secretions that the nursing staff will not let us suction. It is so frustrating to be perfectly capable of caring for his trach with our hands tied by the nursing staff so we have to beg them to come suction him every 5 minutes +. Got some more morphine on board, so hopefully we can all rest a little tonight.


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


Luke is doing better today. He was awake for awhile this morning. He's still in pain, but he keeps signing "more! more!" when we read to him. I even got to see a little smile today. They took his foley out this morning, he's off of oxygen, and the doc just said they're going to take him off the vent now. He's had a full feeding and tolerated it well. Thanks for your prayers!

Monday

{approx 2 pm}

Luke's out of surgery. He's getting situated in his ICU room, haven't seen him yet. Doc says he did great, did what he set out to do, is hopeful about recovery time being 4-5 days.

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{approx 12 pm}

Luke is still doing well. We expect him to be out of surgery in a half hour or so.


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


{approx 11 am}

Doc just finished getting the cartilage graft. Now he's going into the airway. Luke's doing well so far.


********************
{approx 8 am-ish}

IV lines are in. Doc started the cartilage graft. Luke's doing well so far


********************
{approx 8 am}

They just took Luke back to the OR. We should get an update every hour or so throughout this four hour long surgery.

Monday

Thanks all for your prayers and concerns. Whatever it was that was lowering Luke's o2 sats seems to be gone now. He seems to have returned to baseline as of last night. I'm still keeping him home from church on Mother's Day to reduce risk of infection before the big day in one week!

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