Wednesday, February 27, 2013

4th Heart Cath & 15th (Yes, 15th - I Counted) Bronchoscopy

I want to thank everyone for keeping us in your prayers based on my Facebook status updates.  Knowing that everyone is praying helps us keep up our courage and strength.  Stress and anxiety are really high in the Chisholm household lately, and things are about to get harder in the very near future.  I wanted to update everybody on where we are and where we’re headed in the next few weeks.  
Monday, Feb 11 we took Luke to Medical City (home, sweet home!) for his fourth cardiac catheterization.  This is a procedure where they put Luke under general anesthesia and insert catheters with cameras through the main blood vessel in his groin.   Because of his heart’s anatomy (superior vena cava is connected directly to the pulmonary arteries instead of the right atrium of his heart), they had to insert a catheter into the upper right side of his chest too.  They looked around the heart and measured pressures and things.  The doc came out and told us that Luke did awesome throughout the 2 hour procedure, and that he’s a great candidate for heart surgery (called the Fontan) in March.  
About 45 minutes later (we already knew something was up because it was taking too long for him to get to recovery), the anesthesiologist came out and explained that Luke was really struggling to breathe when they took out the breathing tube (extubated).  It seems that Luke was so snowed trying to come out from under all of those drugs that it was really aggravating the remaining floppiness of his airway (malacia).  When he’s sleeping under normal circumstances, he hasn’t ever had trouble breathing since we got his trach out.  But it seems that the anesthesia completely relaxed all the muscles that keep his airway open, so he was really pulling to breathe.  The anesthesiologist was afraid that Luke would tire out before he was completely out from under the drugs, so he decided to put the breathing tube back in.  The team decided that it would be best to admit him to the Heart Unit (CHSU) for the night instead of the Post Anesthesia Unit to go home.  
We got to see Luke very briefly as he came out of the cath lab into the CHSU, but he was completely asleep, and they were keeping him breathing with an ambu bag.  We switched waiting rooms, then waited for another eternity.  It turns out that when they got him to his room in the Heart Unit, they had to re-intubate him again because the tube was too small and it was causing him to leak air around the tube.  The charge nurse finally came and took us back to see Luke.  He was still asleep, but it was a relief to put our eyes on that baby boy and see his numbers for ourselves.  It was disconcerting to see him in an ICU bed hooked up to a ventilator again, but it was comforting to see such familiar faces in the unit.  That afternoon we had a stream of old nurse friends visit us.
We thought the cardiac intensivist on call might try to extubate him that night.  I was sure that I couldn’t get through watching them extubate Luke by myself (after watching him almost die after an attempted extubation in August), so we decided that David would stay the night.  David said that it was a rough night because Luke would wake up every hour or so, disoriented, and try to climb out of bed and pull out his breathing tube.  It was a balancing act to give Luke the right amount of sedation where he was comfortable and not trying to pull out his breathing tube, but not so snowed under drugs that we couldn’t extubate first thing in the morning.  But they made it through the night without any emergencies.
I got back to the hospital in the morning just after shift change.  Around 9:00, the cardiac intensivist came in and we talked about extubation.  I was conflicted about staying in the room for extubation.  On the one hand, I didn’t know if I could handle watching my little boy code on the table again if it were to go wrong.  But on the other hand, I couldn’t imagine leaving the room and just waiting for news without knowing what was going on.  In the end I decided to stay.  David and I stood at the foot of the bed while they took out the breathing tube.  They were very well prepared, and the extubation went off without a hitch.  Luke needed a little oxygen at the start to get him going, and he was really mad, but he was breathing completely on his own in just a few minutes.  
We cuddled on the bed for a long time, watched his favorite show, took a walk around the unit (Luke made it down one hallway by his own power before he needed to be carried by my dad), then back to bed for a nap.  The doctors wanted to make sure he would tolerate two tube feedings before we took him home.  We checked off all of our boxes and made it home by the middle of the evening. 
Luke’s breathing was pretty noisy and labored that night.  He had very little energy and kept desatting every time he would move around.  Thankfully we had a nurse to watch him very closely that night.  David and I were very nervous about the work he was doing to breathe.  We decided to see if he was better in the morning and wait until then to decided if we needed to consult with his ENT or Pulmonologist.   We passed that night with a few extra breathing treatments, but no emergencies.  He was much better and closer to baseline in the morning, although still weak.  I even took him to physical and occupational therapy and he did well.  By Wednesday night, we pretty well had our normal, rambunctious little boy back.  
Thursday night, David and I were talking together about all the trouble Luke had after the cath.  We were worried that the breathing tube being inserted and removed three times could have done something to the airway reconstruction done in August.  So Friday I called Dr. McClay’s (ENT) office to touch base with him and let him know all that had happened during and after the cath.  After going back and forth with the nurses all afternoon, we decided that we would take Luke in to Children’s for another bronchoscopy so that Dr. McClay could take a good look at Luke’s airway.  
I was really nervous about taking Luke in, even for a quick procedure, because I really did not want something to go wrong that would set us back from doing his heart surgery.  I felt a lot better when I heard that the anesthesiologist would not be intubating him for the procedure.  The procedure only took about 30 minutes from the time they wheeled him back to the time they called us back to talk to the doctor.  Dr. McClay showed us pictures of Luke’s airway, and showed us that it is still open and the cartilage graft is still intact.  Basically we’re a go for heart surgery next week.  We got to go back and see Luke almost immediately.  I got to hold him as soon as we got back to the PACU, and he slept in my arms for about an hour while the nurse worked on discharge paperwork.  As soon as he was awake and tolerated some Pedialyte, we got to get him dressed and take him home.  This was one of our quickest stays in the PACU ever.  It was so nice to get home at a decent hour and spend the rest of the afternoon and evening relaxing.  
So we’re all a go for Wednesday, March 6.  Some people have asked what this heart surgery is going to do, so I’ll explain that to the best of my knowledge before I sign off.  We haven’t met with the surgeon yet to talk about exactly what he’ll be doing, so I might have some of the nitty-gritty details incorrect, but this is the basic idea: 
Since before Luke was born, his tricuspid valve (allows the blood to flow from the right ventricle to the pulmonary arteries) did not work properly.  As a result, the blood continually backed up in his right atrium, blowing it up like a water balloon.  His first heart surgery was very complex and had a lot of steps to it, but it was a temporary fix until he was big enough for the two-part permanent repair.  In his second heart surgery, called the Glen, the surgeon disconnected the Superior Vena Cava (all of the blood from the upper half of the body flows to the heart via the SVC) from his right atrium and connected it directly to the pulmonary artery to get oxygenated by the lungs.  (I’ve attached the diagram that I look at to help me keep everything straight, in case you want to follow along.)  So at this point, about half of Luke’s blood does not pass through the right side of his heart before going to the lungs, but instead goes directly to the lungs.  In this upcoming surgery, we will do the same thing with the Inferior Vena Cava (all of the blood from the lower half of the body flows to the heart via the IVC):  Disconnect it from the right atrium and connect it to the pulmonary artery.  So after this surgery, the right side of Luke’s heart will be completely closed off and bi-passed.  This will make his heart more efficient, and oxygenate his blood better.  He should have higher blood oxygen saturations and more stamina.  This will be the last expected necessary repair on his heart.  
We are told that this is supposed to be the easiest surgery of the three.  But honestly, it doesn’t help me relax any.  After watching my little boy very nearly die in front of me in August when death wasn’t even on the radar, I don’t feel confident about anything anymore.  I don’t believe it’s a lack of faith, because I know that all of this is in God’s perfect hands.  I think it’s more a feeling of surrender (but dread at the same time).  Very little with Luke goes smoothly, and even less goes as we expect it to.  I’ve let go of any expectations.  People have been asking how long Luke will be in the hospital after surgery.  We’re told that most kids get to go home after a week.  I honestly have no idea how long Luke will be there.  It could be a week, it could be a month or more.  While of course I hope a normal, 1-week recovery is what’s in store for us, I don’t think anything at this point would surprise me.  We’ve seen too much.  
It honestly feels like we’re walking toward a big wall of fire.  I know we have no choice but to go through it, and I know it’s going to hurt and probably even scar us.  And I have no idea how thick the wall is or how hot the flames will be.  But I do know this:  “I know Who goes before me.  I know Who stands behind.  The God of angel armies is always by my side.”  [Chris Tomlin, Whom Shall I Fear]  I know that Luke will have excellent care.  We could not ask for a more professional or more caring team in the CHSU.  I know that we have each of your support, prayers, and encouragement.  “Perfect love drives out fear.”  That’s a work in progress, folks.  I am rock solid in my faith that God will deliver us out of these trials.  He has been faithful through so much; I know that he will be faithful again.  But I also have some intense fear, worry, and anxiety.  I am dreading the things that I will see in this valley of the shadow of death.  God is fashioning me through this crucible, just like he is fashioning Luke and David.  I know he will pull us through to the other side.  I just don’t know what the other side will look like.  But “I’ll walk through the fire, if He wants me to.” [Ginny Owens, If You Want Me To].  
We have much to be thankful for.  A good friend pointed out that we have long awaited the time when we would be at this point:  Luke with his trach out receiving his final heart surgery.  I’m so thankful that we’ve made it to this point.  Being pregnant reminds me so vividly about the things I was feeling when I was carrying Luke.  Our daily bread was uncertainty and worry.  There were so many unknowns, the biggest of which was whether or not we would see our precious boy live long enough to receive the complete repair or his heart.  Now the end of the tunnel is in sight.  In just a few more months, we will get to enjoy both of our little boys with no surgeries or waiting hanging over our heads.  We do have much to be thankful for.  
Please keep us in your prayers this week and next.  First, Luke needs to stay healthy from all the of the bugs that are floating around out there.  A bout of the common cold could be a deal-breaker for us.  Second, please pray for no funny business during or immediately after surgery.  We have been pretty superstitious about the elevator, so Medical City decided to move the CHSU to the same floor as the OR.  No more post-op elevator rides for Luke (less of a chance for him to code in one).  I know that they did that just for him.  ;-)  We need a good steady heartbeat throughout the surgery and “mopping up.”   Third, we need for Luke to be in a happy place waking up from the drugs where he’s able to breathe gradually on his own.  We need our doctors to be wise and intuitive about the best time to take him off the ventilator (and take out the breathing tube).   Fourth, we need for infection to stay far away from Luke’s hospital room and his body during his recovery.  Fifth, we need God to place his comforting hand on Luke so that he experiences a little discomfort, pain, and fear as possible.  Having your sternum split open for the third time is not easy, even on a little guy as resilient as Luke is.  There are lots of ways that we need God to intervene in between all of those steps, but those are the major ones that I’m able to think of right now.  
As always, we are able to survive through these trials only by the grace of our awesome God and the prayers of his people.  We are mindful of and do not take lightly all of the support and prayers that go up for Luke every single day and have been since his diagnosis.  Thank you so much for for every moment you spend in prayer for him and for us.  We will keep you posted mainly via Facebook throughout Luke’s surgery and recovery.  


Rachael, David, & Luke

Friday, February 15, 2013

Heart Cath

Feb 10

Heart cath early tomorrow morning. Please pray for no infection and for no funny business!


Feb 11

Playing and waiting

Playing with Dave, our old profusionist from the ECMO days!

They just took Luke back to the cath lab. Whole thing will probably take a couple of hours.

The child life specialist just came by to get Luke started on the Beads of Courage program. For every procedure, surgery, medical test, needle stick, blood transfusion,and even wound dressing change, he gets a special bead. For some categories he will even get a bead that represents 100 of something. As David, mom and I sit here and count these things, I keep tearing up thinking about every challenge big and small that he has overcome. I am one proud Mamma, and I'm so grateful that this program exists to help us tell our story. We can't wait to show you Luke's beads!

Luke's heart cath is done. All of his pressures and measurements look great. Dr. Kort says that Luke is a great candidate for the Fontan (3rd heart surgery). He'll be going back to recovery and they'll be waking him up in about 15 minutes and we should see him soon after that. We will be here for another 6 hours or so, then the plan right now is to go home this evening.

Luke had a lot of trouble breathing as they were waking him up. They had to re-sedate him, and they're moving him over to the good ol Congenital Heart Surgery Unit to keep a very close eye on him while they wake him up slowly. Not sure if they will keep him overnight, we'll have to see how the next several hours go. 

We're staying in CHSU at least for the night.

We've moved from the OR waiting room to the Heart Unit waiting room. We got to see him briefly as they took him across the hall to the heart unit, but he was asleep. Can't wait to get back and see my little boy.

We're back in his room now, taking turns eating lunch. They will keep Luke intubated and asleep through the night, and they will try to extubate him first thing in the morning.


Feb 12

We're about to attempt extubation. Prayers please!

Thank you for your prayers. Luke's breathing tube came out about as easily as could be. He is awake and watching Super Why, periodically mad at me for not letting him getting out of bed. We just started a tube feeding. Assuming he tolerates his feeding and we don't have any other surprises, we should be taking him home by the end of the day.

Beads of Courage for my Heart Hero.

We got home with Luke around 5:30. Gave him a bath, then put him in bed. He's asleep now. While he was awake and moving around, his breathing was really noisy, his sats were low and heart rate high. Now that he's resting his numbers are better. We're praying that infection stays away and we pass the next month peacefully until the Fontan.


Feb 13

Luke had a pretty good night. Still not completely himself, but his breathing is much better this morning. I'm so relieved.

Anesthesia turns my sweet boy into a monster.

You'd think after so many times, Luke's hospitalizations wouldn't throw me into a tailspin...
      Not able to focus, be productive, or even be friendly. I just feel out of it.


Feb 14

Best Valentine's Day Present ever: David says to me last night: "If I had any Beads of Courage, I would give you one for staying in the room while Luke was extubated yesterday. It was so hard, but you were so brave! You're a great mom!" 
That's all I need!