praying for luke: September 2012

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