...and the results are in...

We saw both the maternal fetal specialist and the fetal cardiologist today. We are happy and relieved to announce that baby Chisholm is healthy on all counts. We can relax now and focus on the remaining months of a boring pregnancy and the birth of our precious, healthy baby BOY!!!

Trach-Free Life

We waited for so long for Luke to be able to breathe without a trach, that it’s surprising how quickly we have become accustomed to trach-free life.  We brought Luke home from the hospital September 5 a trach free kid after his second airway reconstruction surgery.  We were both so excited and happy, David and I both cried with tears of joy as we pulled away from the hospital.  

That night, we were struck with how easy Luke’s bedtime routine had suddenly become.  Instead of giving him a bath and doing trach care, we now only have to put him in the bath and then put jammies on, say prayers, and say “stay in your bed.”  Even bath times are easier because we don’t have to constantly monitor him like we used to to make sure he didn’t get his trach in the water and aspirate.  

I can’t begin to tell you how much time and frustration we are saving.  Not having to stop every 10 minutes to look for a lost cap or HME, not having to stop and suction (especially during meals), and getting to leave the house with nothing but Luke and my purse saves us so much time and energy.  I am so thankful!  My friend Becca Taylor and I took Luke for a walk to the park the other day, and we both commented about easy it was to bring Luke without having to take all of his attachments with him.  

Luke was fairly quick to recover after his two-week stay in ICU.  He was in an induced coma and paralyzed most of the stay while his airway healed from the reconstruction.  This caused him to be extremely weak when he woke up.  He was able to walk very short distances with a great deal of assistance from us before he left the hospital, but when we brought him home, he chose to crawl for a few days before he got the confidence to try and walk by himself again.  He’s had to relearn several things with the help of his physical and occupational therapists.  For example, Luke is just now traversing stairs with the confidence and skill that he had before surgery, and he was able to jump before surgery, and he hasn’t relearned that skill yet.  

Our hope was that Luke would improve drastically in his eating skills once he was decanulated.  He did improve some right after we got home.  He started eating over 140 g in less than 20 minutes, where before he was only getting 120-130g in 20 minutes.  But jut a few weeks later, he started declining, and he’s been fluctuating ever since.  He plummeted to only taking about 70g-80g in a sitting on average.  We returned to the full strict protocol that we learned in the feeding program in January and saw some improvement after a few weeks.  Right now we seem to be in an upswing.  Luke’s been taking right around 100g in a 20 minute sitting.  That’s equivalent to a pudding cup or toddler yogurt cup.  He’s also been doing well drinking his formula he takes about 4 oz of milk in a sitting along with his food.  We have not improved with texture as we hoped he would after decanulation.  He still gags and chokes on the smallest thing, even a half of a grain of rice.  Even applesauce and Cream of Wheat have enough texture to give him a challenge.  I’m working with his nutritionist and we are considering returning to the day patient feeding program in the summer to try and get him to improve on eating things with texture and crunchies like puffs and Cheerios.  That’s a little ways down the road, and we have miles to go before we’re there.  

In some ways we live in a completely different world, and in some ways, it hasn’t changed that much.  We’re still dealing with diapers (more on that later) and frustrating and difficult mealtimes.  Luke is an ornery three year old who loves his independence.  He tests boundaries constantly.  He likes to see how many times I will tell him to do something before I get on to him.  Typical three year old.  :)  I try to remind myself that if God hadn’t have given Luke that tenacity and persistence, he would not have survived his first months of life, or even the last hospital stay.  I have to be thankful for that too, even though I frequently get frustrated and tired of my buttons being pushed constantly.  

Tomorrow we will embark on our next great adventure:  Potty Training!  I’ve been working with Luke’s Occupational Therapist for weeks preparing for this time.  I’ve also purchased a book, Toilet Training for Individuals with Autism or Other Developmental Issues.  Luke is not autistic, but he has several of sensory and developmental issues that autistic children have.  I’m so glad I bought the book because it’s been giving me tips on how to begin thinking about the process of potty training a kiddo with special challenges.  This is the only book of any kind that I’ve read on the subject, so I can’t recommend it over any others, but I highly recommend the book for someone feeling daunted about potty training a child with special/developmental/sensory issues.  

So, I think I’m all ready with big boy underwear, pull-ups to go over the underwear to protect our new carpet from messes, a homemade sticker chart, a special beloved toy just for potty time, and armed with knowledge and support.  I think I’m prepared for us not to get it the first time.  I’ll be disappointed, but I’m trying to prepare myself for him not being ready.  We’ll see.  I’d appreciate everyone’s prayers for Luke’s success and my patience and sanity over the next few days of intense potty training “boot camp”.  

One thing that has improved for Luke significantly since decanulation is his speaking.  I have been surprised by this because Luke’s trach was not physically preventing him from speaking.  When he would wear the cap or the speaking valve, those would allow him to send air over his vocal chords and create sounds.  So we weren’t planning on seeing a huge improvement in that area immediately after decanulation because nothing really changed in that department.  But just a few weeks after we got home, Luke started imitating our words more and more frequently.  Over the past several weeks, his vocabulary has drastically increased.  He is not saying anything very clearly, but he’s trying to say just about everything.  He particularly likes “h” words:  “help”, “home”, “happy”, “hippo”, “hamper”, “hammer,”  etc.  I think the funnest one so far has been when we heard his nurse call to him for his bath, “Get that little naked hiney (bottom) in here!” And we hear him holler back at her, “HINEY!”  Priceless.  Some of our favorite words that he uses are:  “Nah-nie” (Night-night), “honey,” “pss” (please), and “ah-hum” (awesome).  It is fascinating to watch the transformation from him using 95% sign language to communicate to about 85% verbal communication.  I think David and I are becoming less worried that Luke’s speech will be affected forever from the hyponatremia (low sodium issue) he had when he was 10 months old.  I’m very encouraged that he is really trying to say everything, even if nothing he says is clear yet.  

I don’t think I really allowed myself to believe Luke would stay decanulated (even though he wasn’t having any problems breathing) until Luke’s bronchoscopy in late September.  Luke’s ENT surgeon, Dr. McClay, said at that time that everything looked great.  He is concerned that at some point the cartilage that makes up the airway reconstruction will begin to lose strength and begin to sag.  We had another bronchoscopy the week of Thanksgiving.  At that time Dr. McClay said that the reconstruction still looks great and the airway is completely open.  Dr. McClay was very impressed with the sound and quality of Luke’s voice.  He said that we likely won’t have to get another bronchoscopy unless Luke starts becoming symptomatic (starts having trouble breathing) down the road.  We’ll call him to touch base in early spring.

So what’s ahead for us?  We will be very busy over the next several months.  We’re planning on traveling a lot for the holidays.  We went to Oklahoma for Thanksgiving.  That was such a great time, because David and I were able to leave Luke alone with his grandparents at times instead of one of us always having to be there with him.  I actually got to go see a movie with my sisters-in-law.  It was “ah-hum”!  ;-)  We’ll be traveling to Albuquerque for five days over Christmas.  Then in January we’ll be traveling with my family to Ventura Beach in California for a week-long vacation. 

In February or March, depending on if we can keep Luke healthy and out of the hospital through RSV season, we will go to Medical City for a heart catheterization to prepare for heart surgery.  Then Luke we are planning on Luke having his third and final heart surgery, called the Fontan, in March or April.  This is supposed to be the easiest and safest of all three of the series, but after almost losing him again in August, we’re not taking anything for granted.  As always, we appreciate your prayers as we prepare our family mentally, physically, and emotionally for the heart cath and the Fontan.  I trust God will take care of our son, I just really don’t want to go through another scare like we did at the first extubation trial in August.  Even the heart cath scares me.  The first one at three weeks went fine, but after the one at 11 weeks he came out with a different heart rhythm and they had to shock him to get his heart into a stable rhythm.  And he got Cytomegleovirus after the third one which kept him in ICU for a total of three weeks afterward.  Luke never does anything the way we expect him to, so we are gearing up for a spring full of stress.  

We’re kind of on a time crunch for this last surgery also because (in case you haven’t heard) I’m due with our second baby in mid-May.  We really would like to have Luke’s surgery and hospitalization behind us so we can focus on the birth and bonding of our second child.  We did genetic testing when I was pregnant with Luke to find out if Luke’s heart defect was something we could expect our other children to inherit also.  The results were negative--we have no reason not to expect that our second child will be perfectly healthy.  David and I are still “gun-shy” though.  We had a sonogram at 13 weeks to test for chromosomal abnormalities to indicate Down’s Syndrome or Spina Bifida.  The sonogram at that time did not give the maternal fetal specialist concern, so we can check that one off of our list.  We will have a level two sonogram/anatomy scan on December 14 with the same maternal fetal specialist and also a fetal echo with Luke’s cardiologist on the same day.  These are the same tests in which we found out the tragic news that Luke was going to be very sick.  We are very anxious to have the sonograms, but are also believing that God is going to carry us wherever he leads us with this baby, healthy or not.

So we ask for your prayers as we seem to be closing one chapter of our family history and beginning a new one.  We try and live day by day by the grace of our Lord.  He leads us and he keeps us.  He’s never let us go.  We are so thankful for everyone’s continual support, encouragement, and prayers.  We love you!

Blessings,

Rachael, David, and Luke

playing in the leaves at Gigi and  Guapo's house

Home now with Luke. He and David are both napping (5:00am comes early at this house). I get my nap later. I'm so glad we get to spend the rest of he afternoon/evening all together recuperating. So glad everything went well today.

Hanging out with Luke in the PACU. He's eaten part of a popscicle and drank some water . He's playing with the iPad, his cat piano and his cash register all at the same time. Same ol Luke. We should go home in about an hour.

Luke is out of surgery. Dr. McClay says that The airway is open and everything looks good right now. We will have to do another few check up bronchoscopies to make sure that the reconstruction/graft doesn't start to sag. We will likely do two more of these before Luke's last heart surgery in the spring. We're looking at PACU for a few hours while he wakes up, then home this afternoon. Thank you for your prayers.

We're at the hospital waiting for them to take Luke back for a check up bronchoscopy. We're doing it a week earlier than originally planned just because Dr. McClay wants to check his airway. Surgery shouldn't last longer than an hour as long as they can get an IV quickly, and there's no reason that we shouldn't expect to go home today. Thank you for your prayers.

HOME

Cardiology, check. Pulmonology, check. ENT, check. Pain management (narcotics wean), check. Cardiology team is writing discharge orders as we speak!!! I cannot tell you how happy we are to be heading home today leaving behind a certain, now unnecessary, plastic accessory. 

Living the Dream

Living the Dream

Luke has survived only with the use of breathing apparatuses since he was six hours old.  Finally, at age 3 years and 4 months, he’s able to breathe completely on his own with no help and no equipment.  I want to tell you about the most recent part of this road we’ve been traveling.  I wrote to you a little over a week to tell you how things were progressing after Luke’s second airway reconstruction (LTR).  

At my last update, Luke had collapsed his left lung the night before, but treatments were effective in re-inflating it.  The second morning after the lung collapse, Luke’s x-ray looked crystal clear.  We had a pretty quiet weekend managing Luke’s sedation and pain levels.  He had to remain sedated and restrained because a three year old is going to pull out the breathing tube at the first available opportunity.  

This reminds me.  There has been some confusion I think about the trach and the breathing tube.  On the 21st, during Luke’s LTR, the surgeon removed Luke’s trach when he completed the airway reconstruction, then sewed up Luke’s tracheostomy stoma inside the incision.  So instead of an incision scar and a trach stoma scar, he just has the one (really thin!) scar across his throat.  To recover from surgery, the surgeon inserted a breathing tube (Endotracheal = ET Tube) through Luke’s mouth and the breathing tube was connected to a ventilator.  So for the week and half between surgery and Friday 8/31, Luke did not have a trach, but did have a breathing tube (intubated) to help him breathe while he recovered from surgery.  So technically Luke was “Decanulated” on the 21st, but he was intubated directly after surgery, so he was never breathing on his own.  Hope that clears some things up.

So last weekend was relatively quiet as we waited for a bronchoscopy on Monday morning and hopeful extubation (taking the breathing tube out = no trach, no breathing tube = breathing completely on his own) Monday afternoon or Tuesday.  When Monday morning came, Luke was having trouble keeping his o2 saturations up.  Normal for him is low 80% and he was again requiring a lot of supplemental oxygen and kept de-satting into the upper 60%s-lower 70%s.  I was worried about them taking him down to the OR for the bronchoscopy.  I had a bad feeling about things, but all the docs agreed that it would be safe to continue with the bronchoscopy.  Luke was only in the OR about 20-25 minutes (he was already sedated and already had IV access, so it was really quick).  When he came back up, the anesthesiologist said that he did great and didn’t de-sat at all.  I was relieved to hear that.  Dr. McClay, Luke’s ENT surgeon reported that the reconstruction was intact, and no granulation tissue had grown.  He showed us a picture of Luke’s COMPLETELY open airway.  We were excited about this news and anxiously awaited extubation a few hours later.  

Enter disaster.

Very soon after Luke returned to his room from the OR, his sats started trending downward again.  The Attending, Dr. Sheiron, decided Luke was likely fighting his ventilator, and he would do much better if we extubated right then.  Luke really hadn’t been off of the sedation drugs for long enough.  Extubation started out rough.  I’m going to tell you as many details of the next two hours as I can remember, but it was so traumatizing for us, that I really don’t remember much.  They suctioned his mouth, and put on a nasal canula (for oxygen), which he kept pulling off.  He kept forgetting to breathe, so his o2 sats started dropping like a rock.  

I left the room at that point.  I honestly feel terrible for not staying by Luke’s side whenever he started downhill, but I knew it was bad.  I started sobbing, and I knew I needed to get out of the way to let the medical team save him because I froze and there was nothing I could do.  I went around the corner for a few minutes, then when I came back to stand in the hallway outside his room (the double doors were wide open, so I could see everything), things were spiraling out of control.  I saw Luke’s sats drop to 5% and then 2%, then fluctuate everywhere between 0-70%, but mostly staying in the 20%s.  Then his heart rate and blood pressure started dropping.  Eventually David was squeezed out of the room by the 30 or so medical team working on Luke.  All we could do was hold each other and cry and pray.  At one point they started chest compressions and called for the crash cart, although they never shocked him.  They re-intubated him as soon as they could, but even bagging him wasn’t stabilizing him.  They worked on him for two hours while we stood and watched.  The chaplain and the social worker came to stand with us and asked us if they could call anyone for us.  It was very evident that everyone was seriously worried that Luke’s wasn’t going to come out of that tailspin alive.  

What happened was that at some point, Luke’s right lung collapsed.  We still aren’t sure what caused it.  Since Luke’s left lung had collapsed a few days before, and his sats were already low, when the right one collapsed, Luke didn’t have any reserves so he coded almost immediately.  Another problem was that he didn’t have what is called “central access”.  Some medications can only effectively be given in a central or arterial line.  Luke wasn’t supposed to need one of those, so he just had regular IVs.  They spent a lot of time trying to gain central access.  They eventually got an arterial line.  I’m not sure how they stabilized him, but they did.  The head of pulmonology came to Luke’s room and performed another bronchoscopy to find out what happened.  It showed that the reconstructions was still intact, but the right lung had collapsed.

The day after this happened, David was talking with the unit’s other Attending physician.  He told David that Luke’s guardian angel was watching over him Monday, because the only person in the hospital who could have saved Luke’s life was in that room.  Luke scared Dr. Sheiron very badly.  The other attending said that Dr. Sheiron was not sure that Luke would make it.  It feels validating to know that we weren’t the only people terrified in that situation.  For some reason, it feels validating to know that our emotions and fears really weren’t out of proportion.  Folks, Luke came within a hair’s breadth of heading home to Heaven late Monday morning.  I was in the hallway praying that God would spare his life and his personality (his brain), but part of me was also preparing to say goodbye.  We’ve had some really bad days before, but I don’t think I’ve ever been so scared or been so traumatized as I was on Monday.  

After Luke was stabilized, Dr. (Saint) Sheiron came out and talked to us about what happened.  He explained that normally 60% of the work is done by the right lung and only 40% by the left.  Since Luke’s left lung wasn’t inflated at birth (remember that?), it’s likely that the right was doing even more than 60%, so when it collapsed, so did Luke.  We asked if he expected Luke’s brain to be affected by the sustained shortage of oxygen. He seemed quite sure when he told us it wouldn’t.  “Blue” babies like Luke know how to prioritize a oxygen to the brain and heart better than anybody else, so they are more resilient in this kind of situation.  

Since the reconstruction remained intact and it was clear that the failed extubation was due to the collapsed lung, we set a course for stabilizing Luke, getting his lung re-inflated, and trying extubation again as soon as it was safe.  The team went back and forth between a goal of Thursday or Friday.  Then it was clear that we would try again Friday.  Dr. Shieron said that we had a relatively small window:  we didn’t want to extubate again too soon because we wanted to give the lung time to heal, but we didn’t want to wait too long either and risk Luke getting another infection (trachs and ET tubes are serious infection risks).  

Thursday night, I hardly slept.  I spent a long time that night on my face talking with God.  It reminded me of the night before Abraham took Isaac up on Mt. Moriah.  I’m not saying I’m righteous like Abraham or anything, just that it felt to me that I was completely putting Luke on the altar.  If God required his sacrifice, what could I do but follow him?  “Though He slay me, yet I will trust him.” Job 13:15.  I told God that I wanted to keep Luke for a long, long time.  I asked him to protect his little lungs, and his heart, and his brain, and his personality, but said that no matter what happened, I would continue to do my best to live faithfully and trust him.  

It seemed like it took forever for all the drugs to get out of Luke’s system the next morning and for the team to be ready to try to extubate him.  I was surprised when so few people were in the room and Dr. Sheiron said it was time.  I struggled all night with the decision of whether or not to stay in the room.  I planned to wait in the hall, but when came down to it, I ended up standing with David at the foot of Luke’s bed.  The team was much more prepared this time and the situation was much more controlled.  They sat Luke up, pulled the tube, and suctioned his mouth.  My heart stopped.  They put an oxygen mask over his nose and mouth, but he kept pulling at that.  He suddenly started crying--a sound more rich and clear than I’ve ever heard from him.  He kept crying (it was really more like yelling, because there weren’t any tears; he was mostly just mad), and that meant he was breathing.  His sats stayed up, and he started to calm down.  He kept voicing his protest though for awhile.  David and I were both crying and laughing at the same time at the sound of that precious baby voice and the fact that our little boy had started breathing on his own successfully for the first time since birth.  

The attending and the fellow hung around for a few more minutes to be sure we were going to stay on the right track.  Eventually, they left.  Our nurse brought in a rocking chair, and I got to scoop Luke up and rock him for an hour until he fell asleep.  Sweet baby.  David came in and switched with me, then he laid Luke down in the bed to sleep.  My worries started to lessen as Luke’s sats started to climb higher.  When he woke up from his nap, he was over satting at 92%!  

Luke’s sats have been completely stable since they pulled the tube Friday morning.  We learned that lungs don’t like the oxygenation they receive by breathing through a trach nearly as well as they like the natural way of breathing though the nose.  We can expect Luke’s pulmonary (lung) status to get even better over the next 3-6 months.  Gradually Friday afternoon, he started to wake up and show us glimpses of his old self by smiling and making eye contact, then laughing and touching us.  He was pretty sleepy for the rest of the day.  It struck me how quietly he was breathing.  I had worried how he would sleep without a trach/ET tube, but I was quickly comforted when he took his nap and slept very comfortably with no pulling, no stirring, no noise (strider) and no de-satting.  

So, we’re living the dream that we hoped for for so long.  Luke is breathing completely on his own and if all continues well, he should be trach free for the rest of his life.  Dr. Sheiron wanted to keep Luke in the ICU for a few more days while we weaned him off of methadone and valium.  To compare, when we weaned Luke off of the same two drugs after his second heart surgery, I think it took about six weeks.  Dr. Sheiron has been quite aggressive with this wean over the past few days.  This morning, we have a new Attending on the unit who is quite conservative.  She wants to keep Luke in PICU for another night, and maybe go to the pulmonology or cardiology floor tomorrow.  Going to the floor is good because it means Luke is getting better, but it also means that he won’t have a nurse to himself anymore and more of Luke’s care will fall to us.  All of our family left Sunday afternoon, so the last few days of Luke’s hospital stay (hopefully) will be the Chisholm family solo.  We hope to spend just a few nights on the floor before heading home to stay:  trach free, suction machine free, emergency supplies free.  David and I are looking forward to culling all of Luke’s now unnecessary medical supplies and using the storage space in his room for toys instead of medical equipment.  

We are admittedly very tired.  Tired of being in the hospital, tired of the food, tired of the gowns and masks we have to wear to prevent spreading infection.  We’re tired of not sleeping and not sleeping in the same bed.  It’s grueling, but we’re making it.  Home will just seem that much sweeter.  We are thankful beyond words to have our precious boy almost literally “back from the dead.”  We are so thankful you prayed.  We could not have gotten through this past week without knowing that all of you are praying for Luke to be well and his parents to be strong.  I wish I could thank every single one of you individually for praying and supporting us.  Thank you also for buying meals, bringing presents, being good company.  Thank you for your posts on Facebook.  I’m constantly checking my phone and my computer to avidly read what each of you have to say.  Your words of encouragement are fuel.  Keep praying, please!  We love you and treasure you all!

Blessings,

Rachael, David, and Luke

He laughs!!

And finally, a picture :)

(from David)

Doctor also told us that Luke's lungs haven't liked being trached, so over the next 4-6 months we should expect his lungs to steadily improve. Even just after a day his o2 numbers are better than I've ever seen them.

(from David)

Ok, so Luke is doing great and playing with his toys, but he's having some withdrawal symptoms from his drugs (shaking and stuff). We're taking him off of his drugs fairly quickly and so the doctor wants to keep us in ICU till Monday. After that we will go down to the general floor for a day or two and then go home from there. 

Blessings upon blessings

Luke had an excellent night! Can you believe it?? No suctioning! His o2 sats stayed very stably in the mid 80%s. Luke has been smiling almost constantly since he woke up from sedation yesterday. He's even teasing us like his old self. He has the shakes very badly, which is the only withdrawal symptom that he is exhibiting. The plan for today is to continue weaning him off of his sedation and pain meds, balance his comfort while weaning him off of his narcotics, change his continuous G-tube feedings to four "meals", and move him off of the PICU down to the cardiology floor. We're hoping to be home sometime Sunday or Monday. We love you all and thank you for your continued prayers.

Hallelujah! How GREAT is our God!

"This is the LORD's doing. It is marvelous in our eyes."

Luke's endotracheal tube came out about 10:40. He immediately started crying, a sound more clear than we have ever heard from him. We had an oxygen mask on for awhile, but he didn't need it. He's laying propped up in bed, satting 82% with no extra oxygen. We are so proud of his hard work, so relieved that he's okay, and so grateful to our God who is greater, and stronger, and higher than any other. 

Sing with me! How great is our God. All will see how great, how GREAT is our God.

Luke is doing well today. They are weaning him probably completely off of one of his sedation meds. His ventilator is giving him minimal support - breathing room air and he's initiating all of his own breaths. The Attending spoke with David about the risky nature of tomorrow morning's planned extubation trial. Luke is positive for Rino Virus (he has a cold), so there is a risk that we could have more lung issues tomorrow. Even riskier though is keeping him intubated while the virus has run it's course (two weeks or so) and essentially having him lay around waiting for another infection. So we're kind of in a catch 22. We're terrified, but really trying to wait upon the LORD and put our trust in him and in the skill of our Attending. Thank you for your prayers for safety tomorrow for Luke's lungs, profusion, heart, and brain, and prayers for David Chisholm and me as we surrender to God's sovereignty and mercy

Luke had another really good night last night. No de-sats!!! And no other significant issues. Docs will round in a little while, and we can update you with more details. In the mean time, please pray that Luke continues to improve. Please pray for peace and calm for us and that we can make the decision to trust God concerning Luke's extubation trial tomorrow. We are both very scared when we think about repeating the procedure that caused the disaster that almost took Luke away from us on Monday. Thanks for your prayers!

The medical team just rounded. They aren't making any big changes, so I'll spare you the minutia. Weaning the breath rate on his ventilator and scaling back on some of his sedation meds in preparation for another extubation trial on Friday. His x-ray looked great this morning, and the docs are overall very pleased with his progress. Yay, God!!! 

Luke is doing great this morning. I think the team still has to round, so I'll post a longer update once they do. In other news, I sprained my ankle last night while stepping off the curb at Target. Lovely. Like I needed that. It's not bad, just not much fun to walk on.

Luke had a pretty rough night, de-satting after every breathing treatment and taking an hour of bagging to get his sats back up. Early this morning, Luke started mobilizing his secretions and being able to cough some stuff up and out of that collapsed lung. I went to the hotel to sleep for a few hours this morning and came back to a different baby. He is still using a little bit of nitric oxide

, but they are weaning that every two hours, and he is using NO extra oxygen. Sats are in the high 70%s to low 80%. Heart rate and blood pressure are very well in hand. The plan is to continue to wean his nitric and his ventilator settings and keep him stable (no more dropped lungs!). The Attending set the goal of trying to re-extubate Luke on Friday. Thank you so much for your prayers and your support.

Keep Praying

Luke is more stable now. We just had another de-sat episode, but not nearly as bad this time (dipped to lower 60%s). The chest x-ray they just took was much better than the last and shows the right lung to be recruiting a little bit. The arterial line they got earlier quit working, and they just got another one, so having central access is a big plus. Luke's sats are staying in the 70%s, but h

e is maxed out on support - extra oxygen and nitric oxide (a gas lighter than oxygen, so it can get in the lungs places that o2 can't). We are doing all kinds of breathing medications, chest physiotherapy, and epinepherine. So the next thing is to pray and wait and let our God again show his mighty power and redeeming love. The Chisholms are back in long-term ICU mode again, and it doesn't feel very good. We thank you for your continued prayers.

Please Pray

Just after we got back from the OR, the Attending made the decision to try and extubate Luke. He has been on so many drugs to keep him paralyzed and sedated, that he become intermittently apnic (kept forgetting to breathe). They immediately re-intubated him, but at some point Luke's right lung collapsed and he crashed. O2 sats were very low for a long time. They had to do chest compressions. They have started him on nitric oxide. Right now he is somewhat stable. We're very shaken and scared. All of our parents are on their way back to Dallas. We thank you for your prayers.

Luke is back from the OR. Dr. McClay says the airway is great--completely open. Luke will still having his breathing tube until at least tomorrow, or whenever they think he's ready to be extubated. We're getting Luke settled back in his PICU room. His sats are low and extra oxygen is high. We're hoping that once he comes down from the anesthesia things in this department will get better. The PICU Attending should be rounding soon and we should learn more then.

They took Luke back to the OR just now to take a look at his airway. His O2 sats are a bit better, but still tenuous and requiring a pretty good amount of extra oxygen. Dr. McClay plans to keep him intubated and let the PICU attending decide when Luke's ready to be extubated, maybe this afternoon or tomorrow. We'll post soon with surgery results.

Prayers please. David stayed with Luke who did great all night, and when I came in at 6:45 this morning, he had de-satted to the 40%s during a bag and suction. We're supposed to have surgery and extubation today, but I don't know what's going to happen. He's requiring a lot of extra oxygen again.

We continue to be blessed by outstanding nurses and physicians at Children's PICU. Luke is doing so much better this morning. Heart rate is acceptably in the 110s, o2 sats are great at 86% on only 40% extra oxygen. Chest x-ray looked worlds better this morning than yesterday. Even blood pressure is better. Luke is requiring less pain Meds to be comfortable and we're having to give him Vec a lot less often. We're ready to go to the OR tomorrow morning and see how the airway looks. 

Post LTR Update

Luke had airway reconstruction surgery (LTR) on Tuesday morning, so I wanted to update everyone with the details of the past few days.

Luke came out of surgery fine.  The ENT surgeon did what he wanted to do and feels confident that the reconstruction will enable Luke to breathe without his trach when we get ready to go home.  

The first night after Luke’s surgery, his heart rate started trending upward.  Normally when he is asleep and or/sedated, his heart rate will range in the mid 70s to mid 80s.  Throughout the night, his heart rate started rising.  By the next morning, his heart rate was staying in the 120s.  Over the next two days it had elevated to the 130s and 140s, occasionally hitting 150s.  There have been a couple of theories for why this has been occurring.  First, we were concerned that Luke was not adequately sedated underneath being paralyzed (how freaked out would you be if you were three years old, awake and in the hospital but couldn’t move??).  We’ve been having trouble finding the right cocktail for sedation.  The doctors have been afraid to add different medications to what he had already been getting for sedation because of his low blood pressure.  Second, we always worry about infection, because Luke’s first sign that he’s got an infection brewing is increased heart rate.  

We’ve also worried about his substantially lower o2 saturations.  He normally ranges in the low 80s when awake and high 80s when asleep.  He’s required no supplemental oxygen except when coming out of anesthesia since April of 2010 after his second heart surgery.  Luke has been on supplemental oxygen since he came back from the OR on Tuesday afternoon ranging from 30%-80% (21% is room air).  

Yesterday, Luke had a much better day than he had the few days before.  Early in the morning his heart rate started trending back down and hung out in the 90s to 100s all day.  Saturations have been pretty much the same at high 70%s-low 80%s, but the amount of supplemental oxygen he’s been getting has varied, mostly slowly increasing over all over the last few days.  We are told that it is likely that Luke’s body doesn’t really like the positive pressure of the ventilator, and that’s why he’s require more supplemental o2 than usual.  We hope that when they extubate early next week that his o2 sats will return to normal without the need for extra oxygen.  So we’re riding this part out, hoping and praying that it truly is that simple and it will resolve itself.  

Last night, my mom stayed with Luke at the hospital, and David and I went to the hotel together to get some much needed rest.  My mom called at about 5:30 this morning to tell us that while they were suctioning Luke (with him on the ventilator, suctioning is a much more complicated process) he de-satted to 47% and his left lung collapsed.  When we got to the hospital this morning, they were bagging with an ambu bag and suctioning again.  He did much better this time, but it was a pretty exciting half hour.  After a lot of suctioning, repositioning, and meds, Luke is resting now.  His heart rate is coming back down from the 130s and is hanging out in the 110s right now.  He’s satting mid-high 70s, but is on 75% supplemental oxygen.  Blood pressure is still lower than normal, but not too concerning at this point.  

We just talked to the Attending physician.  He told us that a collapsed lung is quite common with kids who are paralyzed like this for any length of time.  What happens is being paralyzed keeps Luke from mobilizing and clearing his secretions, so despite our best efforts the secretions can get stuck in the lungs, making them too sticky, then the air kinda goes out of them.  The Attending also said that this is something they usually see post-op day one or two, not five, so the fact that he’s fought it off this long proves just how tough he is.  The plan for getting Luke’s lung better is to keep him on his right side and back as much as possible, start IPV treatment, which is a machine that blows air into the lungs to mobilize secretions and inflate the lung, and to do lung conditioning with the ventilator.  The good news is that we’ve suctioned out a whole lot of gunk today, and the Attending already hears air movement in the left lung.  Knowing these things helps us put in perspective the hazy left lung on his morning x-ray and the low o2 saturations - when you’re only moving good air with one lung, your saturations tend to go down.  We’re concerned, as you can imagine over this development, but we’re hopeful that the treatments they have put into motion will help.

Thursday night, the team decided to take Luke off the Vecuronim (“Vec” - paralytic) drip and let him move a little bit to get a bead on how comfortable his sedation and pain meds are making him.  Instead they have been giving him a Vec bolus every two hours or so.  It took until yesterday to really see a change.  Yesterday afternoon, David, my mom, and I were all in the room when Luke came out of it enough to respond to our questions.  “Luke, doe it hurt?” Shakes his head no.  “Do you want your blanket?”  Nods yes.  “Are you scared?”  No.  “Do you want to go bye-bye?”  Emphatic YES!  It felt so good to have him respond to questions, and good to know that he hasn’t been in pain that we know of.  Yesterday evening he was able to tell me he was hurting, and we were able to give some extra pain meds immediately.  

Yesterday his nurse was very concerned again that Luke wasn’t comfortable underneath the sedation and paralytic because every time the Vec would wear off, he would toss and thrash and we’d have to hold him still (so his breathing tube won’t come out) until we could give him more Vec.  After debating all day, the Fellow (I believe this is a doctor that ranks in between a Resident and an Attending) came in and told us that they had decided that his pressures have been okay enough to start him on Methadone (pain) and Valium (sedation) to bridge that gap that keeps opening up between doses of Vec, Fentanyl (pain) and Versed (sedation).  The Methadone and Valium will take awhile to reach their full strength in his body.  

Earlier in the week, the CV-ICU ran out of beds for the heart kiddos.  Since Luke’s issue this time around is not primarily cardiac, they decided to move Luke Thursday morning to the general pediatric ICU.  We were upset about moving, and generally feel exiled, but so far I have been very comfortable with the care he’s been getting.  We’ve had some dynamite nurses and I am very impressed with the Attending physicians.  

I have NOT been quite so impressed with the team of ENT residents.  Yesterday morning before 7:00 (about 20 minutes after we had gotten him settled down from a bagging/suctioning session, losing an IV and sticking four times for a new one, then getting an x-ray) the team of ENT residents came in and started poking around looking at Luke’s surgical dressings.  The leader told me that they were going to take out the penrose drains from both incision sights.  I was expecting this, but as they worked, Luke was stirring and thrashing some - obviously awake underneath that sedation/paralytic, and not one of them said a word to him.  They said nothing to soothe him or tell him what they were doing.  They were surrounding his bed so all I could do was tell him I was still there and touch his feet from the foot of the bed.  

After they left I talked with his nurse about how upset that made me, and she encouraged me to talk to the ENT department about my feelings.  I planned right then to talk with Dr. McClay next time I saw him, but then saw the team walking by our door, so I asked the team lead (he might be a Fellow, I don’t know for sure) if I could speak with him.  The rest of the team bottlenecked at our door.  Enter Mamma bear.  I told him that I know that they’re surgeons, but Luke is not under anesthesia.  He is awake and knows what is going on.  He’s scared and so am I.  When they come in to treat a patient, they need to talk to him and soothe him, at the very least tell him what they’re doing.  They need to treat him like the scared three year old he is instead of a specimen.  The Fellow had a very surprised look on his face (and maybe even a little shame).  He thanked me for bringing that to their attention and apologized for acting that way.  I don’t remember everything I said, but I definitely teared up at the end of my speech.  It was a little out of character for me, and part of me can hardly believe that little shy Rachael had the pluck to do it.  I don’t know if they will change the way they act around other patients or not, or if they just turned the corner and laughed at me, but they did the same thing to Luke after his LTR last year, and I wasn’t going to let it go a second time.  I knew I would regret it if I didn’t say anything.  Earlier this morning, one of the team came by to examine him, and he was much better.  He told Luke he was doing a good job and said some other soothing things as he looked at his dressings.  Maybe my words did help them realize that their behavior was unacceptable and they need to learn some compassion.  I hope so, for our sake and for all the other little kids they treat in the future.  

Well, I know that’s a long update, but writing it gives me something to do besides sit and wait.  It’s cathartic for me to get it all down, and it helps me remember the details as I’m Luke’s medical historian.   

Please, please, please continue to pray for us.  Pray that the treatments for Luke’s lungs help re-inflate the left lung and bring it back to full capacity.  Pray for him to be comfortable during the remaining two days that he will be intubated and paralyzed.  Pray that Luke will not get any new infections and that the antibiotics treat the minor one that he has.  Pray that Monday’s bronchoscopy and later extubation go extremely well and that Luke will get to go home in the middle of next week with no trach.  We appreciate your prayers for strength and endurance and peace for us as well.  We feel very loved and supported, but waiting and seeing is a hard thing to do. Blessings to all of you.  

Rachael, David, and Luke

Be with me, LORD
No other gift or blessing
Thou coulds't bestow
Could with this one compare:
A constant sense of Thine abiding presence
Where e're I am
To feel that Thou art near.

Thursday Night

Vec (paralytic) has been turned off since a little before 9:00. So far Luke hasn't moved, which is encouraging because it means that he (and likely has been) appropriately sedated today. He continues to spike fevers off and on. Right now it's about 99.5 F and we've got some Tylenol on board. Settling in for the night.

Okay, so the cultures they took from Luke's breathing tube early this afternoon are growing some icky things. Heart rate continues to be elevated, and he's continuing to require extra oxygen. We've definitely got an infection brewing. Please pray that he can fight it off quickly. No word yet on if or when they will give him some antibiotics. In a little while, the docs are planning to try taking him off of his paralytic medications and to see if we can get him any more comfortable. It is very difficult to see how comfortable he is underneath being paralyzed. He will have to stay heavily sedated to make sure that ET tube stays where it is.

Luke is doing pretty well so far today. We just got settled into our new room in the PICU. I am very impressed with the attending physician. The room and the people are different, but so far the level of care seems to be the same. Luke has some haziness around his lungs on the x-ray, which is likely just some fluid buildup due to surgery, but they will be taking cultures to get a jump on any infection that might be brewing. Luke's heart rate is still elevated from his home baseline. They've currently got him on 50% oxygen (21% is room air) because of a rough desat before I got here this morning. His o2 sats are mid 80s. I think we've both accepted the elevated heart rate and need for oxygen for now. The plan is to let him rest and make sure he's properly sedated underneath being paralyzed. We will not be having a bronchoscopy today. The plan is to take him to the OR and extubate Monday. Please, everyone pray that infection STAYS OUT OF THIS ROOM. More later!

Luke seems to be doing a little better. Heart rate is still elevated, but I think he reached a peak and is trending downward now. We are told after such an extensive surgery, his body is having to work quite hard to recover. Today will likely be his most difficult. Right now he's maintaining o2 sats that are acceptable with a little bit of oxygen supplementation (30% where 21% is room air). Heart rate seems to be relaxing now. The powers that be really want to put Luke in the regular PICU (not the heart unit) because they need more room for other heart kiddos here. The plan is to move him sometime tomorrow morning. I'm okay with that now, especially since Luke will have one more night in the CV-ICU and he seems to be getting better little by little instead of worse. About to get a visit from Rebecca 'Cawyer' Taylor and my parents. Things are looking up.

God answers prayer. Even the little ones like "please let us stay on the CV-ICU" !!!

Extremely frustrated. I don't feel that Luke is doing great, and the CV-ICU is short on beds. Since Luke's issue right now isn't primarily cardiac, they are moving Luke sometime today to the regular PICU. Just not happy.

Thoughts at Luke’s Bedside Post LTR #2

It’s been a year since our last stay in the ICU.  Luke is now very much aware of what has been happening to him, and is recently quite mistrustful (rightfully so) of anyone in scrubs.  Luke did awesome walking into the hospital, letting his Guapo (grandpa) carry him in most of the way.  He didn’t start getting nervous until it was time to check vitals.  Getting a blood pressure was a no go.  After that, I was pretty antsy about when they would take Luke back to the OR and leave us in the hall.  They ended up giving the Versed plenty of time to work before they took him back.  Luke fussed a little, but he didn’t really cry as he rode away.  David and I probably looked like idiots smiling and waving the whole length of his journey down the hall and through the OR doors.  Oh well.

We arrived at the hospital at about 8:00.  They took us back to pre-op about 9:15, and they finally took Luke back to the OR around 11:30.  The wait felt a lot longer than usual.  We’ve been so ready to get this show on the road.  Everything seemed to take forever.  We were told Luke came out of surgery around 4:00, we talked to the doctor around 4:30, with precious little information to update us in between.  The nurse called three times to tell us everything was going fine, they got his IV with only one stick, and that’s about all we knew.

When we finally spoke with Dr. McClay, he told us that he had every reason to be confident that the surgery did what it was supposed to do.  He said it went as well as it could have.  He took cartilage out of Luke’s rib, using the same incision that he did for the LTR last May.  He resected (cut out a portion) of Luke’s airway and used the harvested rib cartilage as a graft to rebuild the airway.  He was very confident in the integrity of the reconstruction, and he doesn’t think that Luke will need to be intubated (breathing tube + ventilator) for 5-7 days as we originally thought.  He hopes that Luke stays very stable and that he will have the opportunity to do a bronchoscopy on Thursday.  If all looks well at that time, they might extubate (take out the breathing tube) on Friday.  Regardless, we will do another bronchoscopy Monday to see how everything is healing.  

How is Luke?  We’re told that he woke up out of anesthesia (we weren’t allowed back to the room yet) and was pretty mad.  They immediately figured out that there is no chance of Luke leaving the ET (endotracheal/breathing tube) in if he has anything to say about it, so they have sedated him heavily and paralyzed him.  He is very still.  I keep talking to him to let him know what’s going on in case he is scared and can hear me.

He’s got two IVs, one in his hand and one on his ankle.  He’s got leads monitoring his heart rate, pulse ox, respiration, blood pressure, and CO2.  He’s connected to a ventilator via the ET tube they inserted through his mouth.  He’s also got NIRS (I think?) leads on his forehead and back monitoring the oxygen level in his brain and lower organs.  He’s only connected to three active IV pumps - Vec (sedation), Fentanyl (pain), and IV fluids.  He has a small dressing over his right ribs and a large gauze collar around his neck with a penrose drain.  Also Luke is on contact isolation (meaning everyone that comes in his room has to be gowned and gloved) until his cultures come back in the next 24-48 hours.  This is just because it’s hospital standard procedure, not because they think he has an infection.  Hopefully we can keep it that way.    It sounds like a lot, but this is very manageable compared to everything he had connected to him the first time I saw him after his first heart surgery (Starne’s) when he was four weeks old.

We won’t know how well this surgery worked until they try and extubate him, but we have hope based on Dr. McClay’s confidence that Luke will go home next week without a trach.  I allowed myself a moment of banter with my father-in-law earlier talking about what it would be like not hauling that blasted suction machine with me everywhere I go and how much time I’ll save every day not having to hunt down a lost/hidden HME or trach cap.  Right now I’m still at the point where I’ll believe it worked when I’ve got Luke in the carseat behind me and I’m driving him home with a dressing over his stoma instead of a trach.  

I definitely wanted to update everyone on how Luke is doing tonight.  Those are all the details I have for now, I’m sure there will be more to come in the next couple of days.  Even though I’m exhausted, I wanted to sit down and write very much for my own catharsis.  So end Luke update and begin mommy musings.  Don’t feel like you have to keep reading.

Since we heard Luke would have to undergo another LTR, I’ve been anxious to get the show on the road, but dreading it at the same time.  Dreading it for Luke’s sake, but also for my own.  This may be selfish, and don’t get me wrong, it’s excruciating to know your precious child is scared and in pain and there is NOTHING you can do to make it better.  I’ve been very afraid of the personal emotional trauma that is walking down the ICU hallway into my baby’s room.  The sight of the ointment they put in his eyes after surgery, the cool temperature of his little body, and smells of rubber gloves and anesthesia (yeah, anesthesia has a smell) are very real triggers that make me want to panic and throw myself out the nearest window.  I don’t though.  I take a deep breath and jump in.  I talk to Luke, and those words are as much for me as they are for him:  “You’re so brave.  You’re so strong.  You did great.  I’m so proud of you.”  And in the moment, as proud as I am of his courage and his tenacity, I’m proud of me too.  For being here again and not falling apart.  For holding it together.  For not going crazy.  

On the other hand, in an strange way, returning to the CV-ICU has a weird since of homecoming to it.  I’m having to reorient myself to the jargon and the rules.  We just got back this afternoon, but I have an unexpected urge to welcome newcomers.  My parents-in-law and I met a grandparent couple in the waiting room whose granddaughter was born yesterday.  The look in their eyes is so reminiscent of the way I felt when Luke was born: fear mingles with confusion, relief, resentment, bewilderment, and anger.  You don’t know what’s going to happen next, you don’t know one end of the hospital from the other, you fret over every beep and alarm, and you stumble blindly over the medical jargon.  I want to tell them that it’s going to be alright, that they’ll get used to the newness and they’ll be experts soon enough.  But I don’t want to sound like a know-it-all, and of course, I don’t know that it’s going to be alright for them.  

Confession (please don’t string me up because of the next paragraph): honestly though, the other part of me feels very territorial.  I’m well aware that every child here has every bit the same right to be here as Luke does.  I’m not contesting that.  It’s probably better if I don’t ever know any details of another child’s illness because I constantly compare our sufferings with that of other families in the medical world.  With kids whose medical history is not as extensive or dire as Luke’s has been I get resentful--as if they don’t have a right to feel as badly as they’re feeling simply because they haven’t been through the same trauma we have.  And then if the other kid’s situation is worse off that Luke’s, I feel guilty like I’m getting away with something I shouldn’t be; like I got handed an easier version of the test by mistake.  So I’m constantly holding in tension my compassion for others with a similar lot, my competitiveness against them, and the strong urge to reach out and talk with those with whom I can identify.  I have no idea where this competitive attitude comes from, and I hate that I feel this way.  It is certainly not my place to judge whose suffering has been worse, and I continually scold myself for doing it.  I’m sorry friends, I’m working on it.  If anyone has read this far, I’d love to hear from some other moms that may have felt the same way, or at least can identify with what I’m saying.  I should probably keep these thoughts to myself and see a therapist to sort it all out.  Put it on the to-do list.

After that confession, I’m ready to wash my face, change clothes and try and get a little rest.  It’s amazing how exhausting it can be to do nothing but sit at the hospital all day.  It’s been a very long and stressful day, and there’s certainly more where that came from.  I thank you all for your prayers, thoughts, concern, and for putting up with my ranting.  I treasure you as my family and friends and thank you for accepting me as I am.  I’ll keep everyone updated on the developments tomorrow via Facebook status.  

Shift change is over and Luke and I are settled for the night. Luke is sedated and paralyzed and very stable. We got some more fentanyl (pain meds) on board about 45 min ago and he seems to be peaceful. I like that the sleeper couch is next to his bed instead of behind it this time around, so I can just look over and see him and his monitors whenever I want. Looking forward to a therapeutic blogging session and then hopefully a little sleep.

Surgery Update

Luke is out of surgery and we've moved to the CV-ICU to wait to go back to see him. We spoke with Dr. McClay. He said that it went as well as he hoped. He is confident that this surgery did what it was supposed to do. He is so confident that Luke's airway will hold that he wants to take a look with the scope on Thursday with hopeful extubation on Friday, then another scope Monday. We're anxious to see our sweet boy. Thank you for your continued prayers.

Ball is Rolling

Hello everyone, I have great (although anxiety provoking!) news! At the last post, I explained that Dr. McClay, our ENT surgeon, was going to collaborate with some colleagues to decide what would be the best plan of action for our little man – either a T-tube for 6 months or a major airway reconstruction surgery with a horrific recovery period.

David talked with Dr. McClay on Tuesday afternoon, and they’ve decided to go a different route than either of the previously discussed options. On Tues, Aug 21, Luke will undergo another major airway reconstruction surgery. Dr. McClay will again cut out the floppy tissue—at this point I’m not sure if he will just take out the floppy tissue or remove part of the airway cartilage as well. He will take a piece of cartilage out of the inside of Luke’s ear (you won’t be able to see where the cartilage was taken from, so his ear won’t look weird) and place it over the resected airway tissue. My understanding is that during the surgery, Dr. McClay will take out Luke’s trach. I’m not sure if he will stitch up the stoma or let it close on its own, but bottom line is that the trach will be GONE!

During recovery, Luke will be intubated (he will have a breathing tube inserted either through his nose or his mouth and connected to a ventilator). We are expecting a stay in the Cardiovascular Intensive Care Unit (CV-ICU) at Children’s Medical Center for about a week. Our hope upon hope is that when it comes time to extubate Luke (turn off the ventilator and take out the breathing tube), his airway will be completely healed and he will be able breathe well, both awake and asleep, without a trach or any other breathing apparatus. After our week long stay in the ICU while he is intubated, we are expecting another few nights either in ICU or on the floor while they monitor Luke and ensure that he is breathing well enough to go home without a trach. (My heart is fluttering as I type this!!!)

We love this surgical option for many reasons. First, my understanding is that this option provides much less risk to Luke’s vocal chords as the previously discussed option did. Second, the recovery will be much easier: Luke won’t have to have his chin sutured to his chest during the recovery as he would have in the other option. Third, this surgery doesn’t burn any bridges: Dr. McClay is fairly confident that this surgery is just what Luke needs and that he will be able to function without a trach afterward. If it doesn’t work however, we will have to re-trach Luke, but we can always fall back on one of the other two previously discussed options (the airway resection, or the T-tube).

Luke is also slated for another bronchoscopy about a week after the airway reconstruction. It is likely he will still be in the hospital for this, so they will merely take him from his room to the OR and then back to his room. I’m assuming this one and the next one, scheduled for Sept 24 will be just a check to make sure everything is functioning like it’s supposed to. We would welcome visitors to the hospital, but please call or text one of us to let us know you’re coming.

As you can imagine, David and I and our families are cautiously optimistic. This will be Luke’s second airway reconstruction in which he was supposed to be decannulated afterward. We keep saying to each other, “We’ll believe it when we see it.” We are very hopeful that this surgery will do what it’s supposed to do, and we’ll go home with a trach-free kiddo as we’ve been longing to do for three years. I at least, however, am very cautious about getting my hopes up. We would love for it to happen this time, but it hurts too much to expect it and then not receive it time after time.

Please join in praying with us for a maximally effective surgery on the 21st. We would love prayers for Luke’s anxiety level the morning of surgery, and our stress and anxiety throughout. We would love prayers that recovery would go smoothly. We don’t know if Luke will have to be put into an induced coma, or restrained, or sedated throughout the recovery. We will rely on your prayers for sustenance and endurance from our God. Pray for safe travels for our family members and friends who will be traveling to the city and to the hospital during this time. Most of all, as always, we pray for God’s will to be done in this and every medical situation that our family endures. We above all desire for God’s love and awesome power to shine through us to those who do not know him.

We always thank you and treasure your prayers, thoughts, words, and acts of support and encouragement. We could not get through any of this without our Christian family!

Blessings,

Rachael, David, and Luke

Surgery

So it looks like Luke's airway reconstruction surgery will be Aug 21, and we will be in ICU for about a week. Please pray that this works the way we want it to and that when we come home it will be without a trach!

Good News

Got very encouraging news from the ENT today. Right now it looks like we're going to be scheduled for major airway surgery on Aug 28, but we're waiting to get the anesthesiologist on board since it's not a day that Dr. McClay is typically in the OR. I think everything will be confirmed later this afternoon or by tomorrow.

New Territory

Thank you everyone for your prayers as Luke went into the operating room at Children’s Medical Center for yet another bronchoscopy today.  We arrived at the hospital at 10:45 this morning, and the nurse carried him back to the OR at 1:30.  Unfortunately, Luke has reached the age that he is beginning to associate fear and pain with people in scrubs.  Not even the “goofy juice” (Versed) helped this time.  He was very scared and cried as they carried him away from us.  I cried too, but managed to hold it together until Luke turned the corner out of sight.

Luke was only in the OR for about 30 minutes.  One prayer was answered right away.   The anesthesiologist was able to get an IV on the first try, despite Luke’s last fluid intake being over five hours before they took him back.  We were very surprised to be called to the conference room only 30 minutes after Luke left us. 

The information we got from Dr. McClay has given us mixed feelings.  He showed us pictures of Luke’s airway.  The airway is almost completely obstructed again by floppy tissue.  At every bronch in the past, Dr. McClay has taken out floppy and granulation tissue.  The floppy tissue keeps growing back (this is unusual), so Dr. McClay didn’t even microdebraid (remove) any of the tissue this time.  We’ve obviously got to come up with a new plan of action.

Dr. McClay discussed two options with us.  He isn’t sure at this time what he wants to do, so his conversation with us was confusing.  He mostly was thinking out loud to us, using lots of very technical terms and uncompleted sentences. My understanding of our two options are as follows:

1)       Dr. McClay could resect the area of Luke’s trachea that is floppy.  The section is about 4 cm in length, just below the vocal chords.  Basically, McClay would completely cut out the section of trachea, then stitch the ends together.  This is a complex surgery, and because of the proximity of the area to the vocal chords, nerve damage is a risk.  If the nerves are damaged in the surgery, it could possibly leave Luke without a voice.  Dr. McClay said that this has never happened to any of his patients before, but it is a risk we need to take into account.  Additionally, in order to protect the resected airway, afterwards, Luke’s chin would need to be sutured to his chest for 10 days to keep him from turning his head while the airway heals.  That would be really hard with a three year old as active as Luke.  This is also a consideration.  On the positive side, this option would mean we could decannulate Luke at the time of the resection without having to go through capping trials or a sleep study.

2)      Dr. McClay could place a T-tube tracheostomy in place of Luke’s current trach tube.  This is a different kind of trach tube.  Imagine a T flipped on its side.  The top of the “T” would go into Luke’s upper and lower airway, and the bottom of the “T” would extend out of the stoma in his neck.  The benefit of this tube would be to hold open the part of the airway that is floppy and “teach” the tissue the right way/place to grow.  Dr. McClay says that Luke would probably wear the T-tube for about six months, and then we could see if that “does the trick.”  While this option is much less risky and invasive, my understanding is that this option is much less likely to work.  Although we are very proficient in the use of Luke’s trach, the T-tube is a different apparatus and would create different challenges.  I will try to attach pictures to help you get an idea of what the T-tube would look like.

Dr. McClay is going to consult with a few other leading professionals in the field, one at Children’s in Dallas and one in Cincinnati (the place where these kinds of surgeries were developed).  As he gets information and forms an opinion, he should be in touch with us. At the latest, we will talk with him Aug. 1 at the post-op appointment and hopefully create a plan then.  Since Dr. McClay did not remove any tissue, Luke really can’t sleep with his cap on.  We will be canceling the sleep study that was supposed to take place on July 31.  We will discontinue capping trials while sleeping for the time being.  Since the issue is not a matter of muscle tone or practice, pushing Luke to wear his cap when he’s uncomfortable is not helpful. The amount of obstruction in Luke's airway also explains Luke's resistance to wearing his cap while eating lately.

Another concern is Luke’s upcoming heart surgery.  A major deciding factor in when the heart surgery will take place is whether Luke has a trach or not.  The cardiologist would much prefer Luke to be decannulated before the heart surgery because having a trach creates a much higher risk for infection and for that infection to travel into Luke’s chest and heart.  Dr. McClay suggested that if heart surgery needs to take place before decannulation, we could decannulate Luke during the heart surgery, place a dressing over the stoma, and intubate him while he recovers, then re-trach him once the highest risk for infection has passed.  Dr. McClay will consult with the Luke’s cardiologist, heart surgeon, and anesthesiologists when that time gets closer. 

So how do we feel?  While both the T-tube and the tracheal resection both present completely new territories for us, we feel hopeful that we have some new information and new options to explore.  As you can imagine, we are feeling a mixture of anxiety, hope, duty, dread, nervousness, anticipation, relief, and tiredness.  We continually look toward the time when we will be able to put surgeries and hospitals behind us, but we are not at the end of this road yet.  We appreciate everyone’s continued prayers for God’s perfect timing to be manifested in our family and Luke’s precious life.  We want to pray for knowledge, wisdom, and discernment to come to our doctors as many big decisions are looming before us.  And as always, we ask prayers for peace, comfort, and endurance for us as we travel this road. 

We are so thankful for your support and prayers every day!

Love,

Rachael, David, and Luke

T-tube tracheostomy. You can see how the top of the "T" extends to the upper and lower airway.