Tuesday, November 8, 2011

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

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