Friday, August 31, 2012

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.

Thursday, August 30, 2012

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!

Wednesday, August 29, 2012

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.

Tuesday, August 28, 2012

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.

Monday, August 27, 2012

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.

Sunday, August 26, 2012

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. 

Saturday, August 25, 2012

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

Friday, August 24, 2012

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.

Thursday, August 23, 2012

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!

Wednesday, August 22, 2012

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.

Tuesday, August 21, 2012

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.

Tuesday, August 7, 2012

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!
Rachael, David, and Luke

Thursday, August 2, 2012


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!