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.  

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