William Orion Part Two
The first night we were hopeful, scared certainly, and disheartened, distressed, and pretty much every other negative you'd expect given the situation but also hopeful. After all, I had a cousin who had spent 10 days in the NICU after birth due to aspiration who came away untouched, and we were told that night about at least 3 others only one or two connections removed from us that were the same. So we were hopeful and prayerful that after the doctor's expected 10 days we'd be on our way home. But that night they weren't able to turn his oxygen down, in fact they kept having to bump it back up to keep his O2 sats from dropping too low.
By the time the next night rolled around he was the only baby in the NICU to have a personal nurse all night long. The sickest baby in the NICU. Then his lung collapsed.
They put in a chest tube but they still couldn't keep his oxygen saturation up. Less then 36 hours after admittance the doctor came to speak to me. My husband and his mother (who had flown in to be with us and the baby) were out of the hospital, getting food, clothes, and medication.
The doctor told me if he crashed again there was nothing they could do. He had to be transferred to Legacy Emanuel were they could put him on ECMO if he continued to decline.
I was familiar with it, not from personal experiance but from study, and it terrified me. Extracorporeal Membrane Oxygenation is in effect a heart/lung bypass machine. It takes the blood from the body, runs it through a machine that oxygenates it, and then pumps it back into the body. The risks are many, the statistics aren't great, and, if you are in a position to need it, it means there isn't anything else they can really do but hope the body takes the rest to heal and get better. And our baby already had a hypoxic brain injury. That increased his risk for inter cranial bleeds from the ECMO treatment, which, due to the high amount of blood thinners required for it, would mean an almost immediate death.
He said that Orion was stable for now, and it would be much better to move him while he was stable then risk an emergency move while he was in the midst of a crash.
I was sitting on my hospital bed, still needing a wheelchair to move around, staring at a consent form to move my critically ill newborn across town to another hospital where he may or may not need a treatment that in and of itself was life threatening. The doctor said I had to make a decision now, the transfer process was lengthy and needed to be put in motion as soon as possible before Orion crashed again.
I told him I had to call my husband, had the doctor explain it to him over the phone, but I was the one who ultimately had to sign the form and get the process started.
Moving him was terrifying. Just getting him ready to be moved from one crib to the transport crib, with his cooling blanket, intubation tube, oxygen supply, chest tube, and various I.V.s took hours. They let us touch him right before they moved him. It was reassuring, the brief contact, but it also had that cold finality to it, knowing they were allowing it because, if something went wrong, it would be the last time we would touch him alive.
My husband had ridden with him in the ambulance from home to the hospital, so we decided I would ride with him from St. Vincents to Emanuel. He would follow with the rest of the family in the car.
It was hard to even breath during the ambulance ride, my eyes always glancing backward, turning around to try to see the transport team and my son every time someone shifted or a monitor changed pace. It wasn't a long ride, in good traffic the two hospitals are about 7-10 min apart and, even though we didn't go lights and sirens, most people give way when they see an ambulance trying to merge or change lanes.
When we got to the hospital though they parted him from me. They had to get him transferred to the new NICU, everything set back up, and let the staff reevaluate him. And they wanted to do all that before they spoke with us. So we waited.
I should make a note that I had been discharged at this time, realistically too early. I still couldn't make it around without a wheelchair, although I did my best with a walker for short distances if I had to, and, while I was in the hospital I was taking 15 mg of oxcycodone. When they discharged me they gave me a prescription for 10mg of oxcycodone and told me my insurance only covered me for 3 days of post-partum care (it didn't really matter that the 1st 'day' didn't start until around 11pm or that I had a medical condition that had made giving birth particularly stressful for my body and left me in a great deal of pain). The nurse at the new hospital kept telling me "we can get you transferred over if you like", "we can call your doctor to have you transferred" etc. When I told her I had been discharged she was surprised.
We also learned, while we waited, that, while St. Vincents let parents of NICU babies stay in open rooms, Emanuel had no such arrangement. Oh, they had a agreement with the local Ronald McDonald House to house parents, but only those from out of town; we lived too close to count. Besides, the McDonalds house was still out of the hospital. We had a baby who was very likely dying and, if he did go downhill, would do so very rapidly. Going home, or even to a hotel, was out of the question. But, while Emanuel had it in their 'patient's rights' that parents had the right to stay with their children (except for during shift change), the most they guaranteed were chairs next to his NICU crib. There were 3 overnight rooms, available on something of a weighted first come first serve basis, but not only would we have to sign up for those every night, we wouldn't know if we had them until 9pm and, at anytime during the night, if parents from out of town got transferred in, or if a baby became sicker than ours, we might get booted out.
Finally we got in to see our baby, talk to the doctor, meet the nurse, and, thankfully, get one of the rooms for the night. Orion had made the trip safely and was now in the hands of one of the leading children's hospitals in the US. (and one of the best in the world for ECMO)
At 3 am that morning, after an hour or so of sleep, I woke up to go back and check on him and nearly screamed when I tried to move. I made it to my wheelchair and spent several hours in the ER getting checked back into the hospital. They didn't know where to put me. My problem was pain, brought on by labor sure, but also due to a pre-existing condition and ultimately a bone/joint problem. Plus I had a baby in the NICU. I ended back up in the maternity ward but I wasn't actually a maternity patient, so I had confused doctors and nurses coming and going for the next two days.
Meanwhile, the next day, Orion's lung, despite the chest tube, again collapsed. At St. Vincents we were allowed to remain (obviously outside the 'clean' area set up for the surgery) close to him while they had inserted the first chest tube. But when the doctor showed up to place the second one she told us we would have to leave. She "didn't want to get nervous due to parents looking over my shoulder". I was furious, as much as someone as stressed out, zombied, distressed etc as I was could be (still hadn't slept for more than a few hours since the birth). Our baby was about to undergo a surgery, one that could potentially be fatal, given his current state, and one that I knew did not require our absence, and we were getting kicked out. But what could we do? Getting hysterical at the doctor would just prove her point, and it wasn't like there was anyone to appeal to, so we left.
It was shortly after the second chest tube that the doctors informed us that they could not keep his O2 sats up any longer. Another crash was imminent and yes, it might be 10 min or 2 hours away, but it would be better to get him onto the ECMO now than wait to try to proceed while he was in the middle of a crash.
My husband and I sat in chairs, side by side, watching them prep our son. He was just coming off the cooling protocol, in fact, they speeded it up some so that he would be at normal temperature for the ECMO surgery. Since the risks of ECMO went up if he was cooled. We still hadn't held him, and, with the ECMO, he would have to remain perfectly still so as not to jostle the blood flow, so touching him while he was on it would be at a minimum and must be done with exceptional care.
We sat there holding the paperwork, the consent form and the sheet on the risks of ECMO, and prayed that God take care of our baby. We were honest enough, with ourselves, each other, and with God, to realize he was dying. The odds weren't in his favor, and, while we prayed and we hoped God would allow his healing and let us raise our son, we also prayed for acceptance to God's will, that if this fallen world of sin and death took our son away from us that God would raise him for us, keep him safe until we could see him again. We sat holding hands, feeling we had done everything we could. It was in the hands of the doctors to do their best, and ultimately in God's hands if Orion would beat the odds, or if he would go to be with his heavenly Father before us. I will not say we were content, we were not, we were terrified, fearful, heartbroken, and depressed in spirit. But there was none of that hesitation or distance that you hear about in some couples, when the illness or death of a child drives them apart. We were together, holding hands in prayer and in supplication to God, calm that we had done everything we could as parents and it was time to wait, and see what God would bring. I know both of us in that moment were waiting for him to die, not ready for it, certainly not anticipating it, but acknowledging the very real possibility and secure that God would guide us though it if it came.
They all but shut down the whole NICU for the ECMO surgery, it, unlike the chest tube, was a full blown, sterile drape, medical personel only surgery. The doctors said his heart was strong, which was good, it would continue to provide most of the pumping during the ECMO treatment, so they only had to insert a cannula in his jugular (most times ECMO severs both the carotid and the jugular on one side of the next, Orion is only missing his jugular). Which was good, it cut down on some of the risks, both immediate and long term and made the initial surgery itself less risky.
The time came and we left the NICU, we were given a pager, in case something happened, and the nurses would let us know when it was over. Ben went to wait for the family to arrive (my family lived about 90 min away and was driving back in, after having left to care for their animals after he had been settled in the new hospital, to be there for the procedure) I went to find a room to pump in (I was pumping breastmilk so that, once Orion was off I.V. foods, he could be given colostrum and later breastmilk, and so that I could still breastfeed once we got to take him home)and hopefully to get some sleep. It may seem odd, from an outsider's perspective that I slept through most of the surgery, but we had said our prayers, made our peace as best we could, and were simply waiting. I was beginning to do something I had never done before in my life, fall asleep when I didn't mean to, so, at the advice of my doctors, I took the opportunity to try to get a few hours of sleep, instead of pacing in a wheelchair. The nurses knew where I was, and promised to wake me up if anything happened.
They didn't need to. I woke up just as the surgery, which went very well, was ending. I had time to go see the family, and then we were allowed to go see Orion.
It was scary, seeing him lying so still, with so many tubes and lines and I.V.s. There was his breathing tube of course, his two chest tubes, and the array of I.V.s, what was new were the two large tubes running from his neck to the ECMO machine, one the dark red of spent blood, one the bright red of oxygenated blood. So much blood, so much more than his body actually contained, yet one slip, one kink, one trip, and he would bleed out, not in minutes like from a severed artery, but in seconds.
They told us he could be on the ECMO for 7 days, after that, he had to come off, and he could not be put back on. We understood. He had 7 days to get better, or he would die. The average run on ECMO was 5 days. While he was on ECMO he would have twice daily brain scans, to check for swelling or potential bleeds (although we knew there would be little they could do if they found one) and twice daily x-rays, to check his lungs for healing.
And this is where the story takes a turn. Our little one, who had been the sickest baby in two NICUs, started improving rapidly. Every chest x-ray was noticeably better than the one 12 hours before, even to our untrained eye. The doctors and nurses were amazed at his progress. In less than 3 days they were talking about taking him off the ECMO.
It was stressful all over again. Once he was off, he couldn't go back on. But the longer he stayed on, the longer he played the odds on a complication. His lungs were healing well, but if he struggled when they took him off, we had just eliminated the only thing that was helping. But the doctors were all in agreement, his lungs had healed enough that the ECMO was more risk than it was worth.
Removing him was much simpler than putting him on, a gradual turning off the oxygen of the machine as they turned up his ventilator and then a quick removal of the cannula followed by a few minutes of pressure. It seemed odd, that something so dangerous, so life changing, could be over with so little fuss. And, within a few hours of the decision to take him off, the machine with its very own nurse to monitor it was gone, and it was just the ventilator sharing space with Orion's crib in his little spot in the NICU. He still had 2 official nurses (he'd had 3 while on ECMO since the machine itself had a full time nurse), a personal nurse and the nurse that was in charge of that row in the NICU. He was still, in some ways, the sickest baby there, but now it had changed. He wasn't getting worse, he was getting better. Not only that, but rapidly better. Instead of trying to ready ourselves for his death, we could again expect him to come home.
He was still on a ventilator, still had 2 chest tubes in, a PIC line, and a regular I.V. as well. But he was now awake enough that he could move his arms and legs, if sluggishly, and occasionally flicker open an eye (they were a blue so dark they were almost black).
It was nearly miraculous, he was recovering.