Pass the Salt (to Luke) Please!

I know it’s now a few weeks behind us, but I wanted to post the latest chapter in Luke’s journey anyway. I’ve been so busy and tired, I haven’t had a chance to put it all down until today. We’ve had Luke home from his last hospitalization for about a week and a half. It has been a scary and trying few weeks for us, but thankfully it looks like things are under control now.
Luke was in the hospital after his second heart surgery about a week and a half (we left the hospital post-op day 10). A few days before he went home, his lab work showed that his sodium was low. This wasn’t alarming, and it’s an easy fix. We’re told that this happens to babies often who are on large amounts of diuretic like Luke was after his surgery (They keep post-op patients on lots of diuretic to rid the body of fluid which otherwise would make the heart work to hard to pump). The doctors had Luke on sodium supplements up until the day before we took him home. As is pretty typical for babies who have had Luke’s heart surgery (or maybe just heart surgery in general) they substantially reduced Luke’s diuretics before they sent him home. They assumed that Luke’s body would behave like every other baby’s and retain the sodium that he was peeing off once they reduced the diuretic. (Well, you know what happens when you assume…) So they sent us home loaded up with meds (including three doses a day of diuretics) with an order to get his sodium checked in a week or so, just in case.
They never made a big deal of getting Luke’s sodium checked, so I figured we would have it checked when we took him to vent clinic a week and a half later.
The problem was, I don’t think Luke ever in his life has acted like every other baby. Before we left the hospital, Luke had been awake quite a bit of the day, playing and smiling. We made it home about 4:00 on Thursday afternoon. He played happily in his crib for about two hours while David and I got all of his meds organized into a schedule we could all follow. At about 6:00 Luke fell asleep. And he slept. And he slept. And he slept. With the exception of about 30 minutes Friday morning, Luke slept until 2:00 Friday afternoon. 20 hours. He was awake for a few hours and then went back to sleep.
We had a few theories about all this sleeping. Either being in the hospital just wore him out (like it wore David and I out), and he just needed some peace and quiet to catch up on his sleep, or the narcotics (Valium and a pain medication called Methadone) doses he was on were too strong and causing him to sleep more. We also had another worry. The Methadone that he’s on can only be compounded by our pharmacy to a 10:1 ratio (10 mg to 1 ml). Luke is on less than 1 mg per dose, so it’s a tiny amount that we’re giving him – it equals out to be about 0.08 of a ml. Since his Valium is a 1:1 ratio, we give him 0.8 of that med, so it would be really easy for the nurses, if not paying attention, to give him 10 times the amount of methadone that he is used to. While this wouldn’t kill him, it would likely put him into severe respiratory distress, on top of knock that kid out. So we were also worried that someone could have given him an accidental overdose of Methadone. Our home health nurses kept telling us to be patient and let him sleep; he had gone through such an ordeal, he just needed to recover. But as the week wore on, Luke got worse instead of better. He was sleeping more instead of less, and even getting to the point where he was falling asleep in his highchair when we would try to feed him. We hadn’t seen him smile since the day we brought him home.
A week after we brought him home, Thursday again, he had the worst day yet. I finally called the doctor at the PICU and told him that I was worried Luke might be getting to much Methadone and Valium because he was sleeping so much. Dr. Stromberg told me to do a pretty heavy wean of both meds and watch for withdrawals. I did what he said, but Luke continued to sleep. By the afternoon, when Luke was awake he was extremely fussy. I was perplexed – if he was on too much of the narcotics, he should be able to handle a wean. But when he was awake he was acting like he was in pain and going through withdrawals. By the time the ladies had left my house that evening after our weekly fellowship, I was starting to get really worried. Luke started having muscle spasms on top of being sleepy and fussy. By the time David got home, Luke was no longer able to maintain eye contact with us, and his eyes started rolling back in his head. David says that then, and even before then, he was wondering if Luke’s sodium level had something to do with Luke’s confusing symptoms. David and I agreed that he should call the PICU doctor again and ask for advice.
God was with us in that moment. The doctor on the floor that night was Dr. Rhee. While a general pediatric intensivist and not specifically a cardiac intensivist, Dr. Rhee was the doctor that diagnosed Luke’s sodium deficiency in the first place. After an hour of waiting for Dr. Rhee to confer with Dr. Kao (Luke’s cardiologist), Dr. Rhee told us that he thought it would be best if we got Luke’s sodium checked immediately. At 11:45 pm David and I packed up Luke and all his stuff and headed off to the ER at Medical City. We told our nurse to wait at our house for us, because we expected they would give Luke a sodium supplement and then release him. We would want to sleep when we got home in a few hours. Something else was in store for us.
When we got to the ER, they did their regular work up of x-rays and blood work, but added a head CT scan. They had tough time getting blood and an IV on Luke (surprise). But they got enough blood on the first stick to run a basic blood test. They told us after they ran the test that they evidently didn’t get enough blood because the sodium level didn’t register (in actuality in the first reading, they had gotten enough blood, but Luke’s sodium level was so low that it didn’t register). They finally got an IV on Luke and enough blood to run the test again. Dr. Rhee came down from the PICU to tell us the results. A normal sodium level for a baby Luke’s age is between 130 and 140. Luke’s sodium was 95. Dr. Rhee told us that thankfully, Luke’s sodium has slowly and steadily declined over the past week at home. If his sodium had declined acutely to that level, it would have killed him. It was a miracle that Luke wasn’t having seizures.
They decided to admit Luke to the PICU. We headed upstairs at about 3:30am. We didn’t take any time to get Luke settled before they sent us into the next room (which was vacant, so we didn’t have to go into the waiting room) while Dr. Rhee tried to get some semi-permanent IV lines (arterial or central) in Luke. The problem was that Luke being in the hospital for 5 weeks before meant that all of his IV line sites were used up. The IV they got in the ER was in his hand and very positional (the IV has to be just in the right spot in order for it to work). The jostling during the transfer to the PICU lost the IV line, so Dr. Rhee was in a rush to get a working line so we could start replacing Luke’s sodium. He made several attempts, but was having a really hard time. He finally came over and told us that they were going to try to get an IO line. We learned that in emergency situations like Luke’s, doctors can get a line in the patient’s bone marrow rather than in the blood vessel. IO stands for Inter-oscular. They gave Luke some lidocaine and drilled a tiny hole in his left shin bone. Being in the next room, we heard the drill, and I almost climbed the walls. They couldn’t get that line either.
If at first you don’t succeed, try, try again. Dr. Rhee tried once more and got both a central line and an arterial line in both sides of Luke’s groin. They started him on a sodium drip to slowly replace his sodium. We learned that if you replace the sodium too quickly, you can cause even more damage to the body. Everyone cleared out of Luke’s room by about 5:30am. By 6:00, Luke was sleeping and stable. David and I were falling over, so we decided to get a few hours’ sleep at the hotel nearby. We came back at about noon. Luke had been transferred down the hall to the Congenital Heart Surgery Unit (where we’re most comfortable) and had one of our favorite nurses, Mary Catherine. After the terrible night before, we felt much better having Luke in our “home away from home” being cared for by one of our favorite nurses and favorite doctors, Dr. Chemellie.
Over the weekend, it was a mystery why our discharging physician and nurse practitioner had not sent us home last time with a sodium supplement. We later talked to the nurse practitioner, and she told us that she had discussed the sodium issues with Dr. Kao. They had deliberately decided that we wouldn’t need to continue the sodium supplementation since the diuretics had been greatly reduced. Nobody expected Luke’s body to respond the way it did. We began working with the same nephrologist that had cared for Luke during his kidney failure after ECMO. Dr. Quan made it his mission to run tests and find out what was causing Luke to dump sodium through his urine. Days later, it seemed that the only culprit was the Lasix (diuretic). They discontinued one of Luke’s diuretics and greatly reduced the dose of the Lasix. They also continued to give Luke a sodium supplement several times a day.
Over the next several days, Luke woke up more, gave us some half smiles, and gradually returned to almost his old happy self. We got a brain MRI on Monday, and results showed that the sodium deficiency did not cause any permanent brain damage. We did find out some results that we didn’t receive after Luke’s first brain MRI back in September. Evidently Luke had some brain atrophy present in September (assumed to be from the head bleed and seizures caused by ECMO), that is still present now, but no additional atrophy was found. Wikipedia says that “atrophy of any tissue means loss of cells. In brain tissue, atrophy describes a loss of neurons and the connections between them.” The nurse practitioner told us that Luke’s brain can heal over time with proper nutrition.
We left the hospital 10 days after we entered on less diuretic and a sodium supplement. They also tweaked most of his other meds and returned him to the same wean schedule he was on for Methadone and Valium before we re-entered the hospital. We also left with orders to get Luke’s sodium checked about twice a week. We also left armed with the knowledge of what a sodium deficiency looks like. We’ve gotten Luke’s sodium checked three times since he’s been home, and he’s been spot on (haven’t yet received the results from the latest test). We have plans to see Dr. Quan and Dr. Kao this coming Tuesday.
Concerning to us is Luke’s regression, particularly in his eating. Before the sodium issue, Luke was eating spectacularly, not even needing his pacifier to swallow. Since we’ve had him home, Luke either doesn’t remember how, or refuses to swallow. His eyes continue to twitch noticeably (called nystagmus). He no longer answers to us calling his name, mimics facial expressions, or plays peek-a-boo like he used to. We are working on getting an earlier appointment with Luke’s neurologist.
We thank you for the prayers that you have offered up on Luke’s behalf. We ask you for your continued prayers for Luke’s health, and that the sodium deficiency did not cause any permanent brain damage. This hospital stay was particularly demoralizing for David and me. We took Luke home after his surgery ready to just watch Luke get better and better. A sodium/electrolyte issue was not even on our radar screen. Taking Luke to the hospital that night, we expected this would be a small bump in the road. We expected we would even be back later that night. We ended up staying for 10 days. We want to look forward and be positive, but it’s discouraging to think that something else that’s not even on our radar screen could put Luke back in the hospital for days or weeks. It’s just made us feel like there is no end to this terrible ordeal.
I want to mention something a little unrelated to Luke’s health. During this past hospitalization, one of the PICU nurses (who had watched over Luke a few times during the nightshift) committed suicide. Needless to say, it was devastating to the nurses and staff of the unit. We were able to be a comfort to two of our nurse friends, and David was able to share our faith in Christ through a conversation about suicide, heaven, and hell. We are going through a terrible ordeal with Luke’s health. But I believe that it’s our job as Christian believers to share our faith wherever we go. Having a positive attitude, being friendly, and keeping a sense of humor has allowed us to create relationships with some of the nurses and use those relationships as a basis for sharing our faith and God’s miraculous actions.
We greatly appreciate everyone’s prayers. It helps to have a church family, not just at Rockwall and Brin, but all around the world who rise up in support and pray for our family. We rely on our church family, and we pray that they will not only be supportive of us, but will be faithful in their own right, kind and loving to each other. It’s so important to have a base of believers who will take seriously the responsibility of expanding God’s kingdom and maintaining a loving and disciplined church that is appealing and inviting to the unbelievers that observe us. The crisis situation during this past hospitalization was a poignant reminder to me that unbelievers are always watching us to see how we behave. Will we take the easy every-day moments and the tough moments seriously and mindfully so that we can share Christ when crisis comes? That’s what David and I have tried to do since the day of Luke’s birth. We thank you for your support in that endeavor.
Again, thank you for your prayers. We love you.

Rachael, David, and Luke