Bah Humbug

So, it's been a while since we've posted. Mostly because there hasn't been any good news, and we don't like to post when it's all depressing stuff. Something happened that we feel everyone should be in the loop on though, so here's a quick recap.
Remember how Oakley was on high-flow oxygen and it didn't work? It made his nuts disappear in a swollen, looking like a water balloon about to burst scrotum. He was working against the oxygen so hard that it sent a bunch of fluid down through the channel where his testicles descended when he was in utero that hadn't fully healed up yet. So, pulmonology looked at him and said that high-flow wasn't a real option for him anymore, and that CPAP would probably be the same story. They started his LASIKS (which is a diuretic-to make him pee and get rid of any extra fluid hanging out that his body didn't need). Being on diuretics can cause your electrolytes to get funky, can cause issues with your kidneys, and the kidneys are responsible for a lot. His kidneys have been giving him high blood pressure for months now, and he  was on 3 or 4 different blood pressure reducing medications. He started to have need for them more and more often, and then his blood gas started to look bad. His CO2 in his blood was higher than they like, and this can be caused by a couple of things. It can be due to difficulty ridding your lungs of the CO2 when you breathe, and it can also be a response to your kidneys not shedding enough bicarb when you pee. Oakley's was assumed to be due to his work of breathing, so his doctors started scrambling, trying to figure out what to do.
His doctors had changed services, so the ones on right now were not present for the jewel bag blow up. They kept pushing for Oakley to go on to high flow, and we kept saying no. He worked against the pressure, and it ended up being worse for him than being on the non-pressurized nasal cannula. They kept pushing for us to go up to PICU, because they wanted to "maybe" intubate him, because that would help his blood gas. I'm all for helping his numbers, but he was physically looking fine. His work of breathing came and went, but he was happy, smiling, and didn't act like he was having much trouble with his breathing.
His oxygenation was looking good as far as his SPO2 monitoring (the oxygenation content of the blood getting to his extremeties), so the regular day to day BMT doctors said they were fine just waiting this all out, but every night when the hospitalists came on duty, they freaked out and wanted to send Oakley upstairs.
Let me clarify why we don't like PICU; only one parent can stay the night at a time. It's not cohesive to family living. It's not comfortable, and there's no semblance of privacy. We cannot eat in Oakley's room in PICU, and we never got to pick Oakley up and cuddle him while he was in PICU before. It sucks. Also, we just got our big, comfortable room back, and we put up our Christmas tree (which wouldn't be allowed in PICU). So we're partial to staying on the SCCA floor, because we get to kind of run the show in Oakley's room.
After 3 nights in a row of complete exhaustion from waking up and telling the hospitalists that Oakley was not going to the PICU because of their discomfort with his breathing (by the way, he was still saturated with oxygen, wasn't having big de-sats or anything), Trevor and I finally agreed to let them do a trial of highflow on the SCCA floor (normally they cannot do high flow on the SCCA floor, but if it's not an emergency or acute event, the rules can be bent) on Thursday. We bargained that they could try him on the high flow at 2 liters of oxygen per minute (he was at 1 on regular cannula and at 98-100% on his SPO2) and that if it didn't work, we could go back to nasal cannula or blow by (which is just a tube that we put by Oakley's face that blows humidified oxygen for him to breathe). Nothing happens quickly here, and even though this deal was hammered out at about 11 am, the high flow didn't get set up until about 5 pm. Pulmonology was notified, and though they disagreed with putting Oakley on high-flow, they were ok with a trial run. He started out at 40% oxygen running at 2 liters per minute. He dropped from 99-100% on his SPO2 down to the high 80's. They let us put the blow by next to him to give him some time to synchronize with the high-flow and try to give it time to work. We gave it a couple of hours, and then pulled the blow by. He was still in the high 80's, so RT (respiratory therapy) bumped his oxygen content up to 46% (not allowed to go that high on the SCCA floor, but oh well.) and told the hospitalist. The hospitalist was worried, came in, saw that he was working MUCH harder to breath with the high-flow, and bumped him up to 3 liters. Trevor and I were upset, told her that wasn't what we discussed with BMT, and we basically got told it was try this or go up to PICU. We shut up, because we really just wanted them to see that we weren't lying about high-flow not working for Oakley, so we figured we better let them see that high flow at any level wasn't going to work.
At 3 liters and 46% oxygen, Oakley was saturating in the low 90's, which is acceptable, but not preferred. He would cough and drop down into the 80's every now and then, and his blood gas had come back unchanged from the day before on nasal cannula and blow by, so they decided to put him up to 4 liters. By 3 am, Trevor and I were done. Oakley was working so much harder to breathe, and his stomach muscles were working all the way down past his naval. He was bowing from side to side with his breathing, and his nostrils were flaring. He was grunting. He was doing everything he could to show us that he was exhausted from just trying to breath. Trevor and I told the hospitalist that we wanted them to stop the high-flow and put him back on the nasal cannula. She told us she wasn't able to do that, but that she could send us up to the PICU. We told her no, we didn't want to go to the PICU, we wanted the high-flow off. She told us she wasn't comfortable doing that, and making that decision, so it would have to wait until the morning, when the BMT team got in. This has been so frustrating for Trevor and I; because the hospitalists are so incapable of doing anything except for writing orders to change the insulin, that we don't see the point in having them. They drive us nuts, because they don't read the chart, and they don't do what they're supposed to. We found out after the fact, that pulmonology (who had a freaking fellow on call) was not receiving the updates they were supposed to receive about them changing his high flow concentration or the increases in the pressures. UGH.
Anyway, we thought Oakley would be able to tough it out for a few more hours. We had just gone to bed, were barely starting to fall asleep, when RT came in to do therapy for Oakley. They give him Albuterol and then use a massager or their hand to pat him and break up anything in his lungs. Trevor was still awake as she started the Albuterol. Oakley started coughing (which causes him to desat) and the RT grabbed the bag to manually oxygenate him. He started puking, and instead of suctioning the vomit out, she continued bagging him, making him inhale his vomit into his lungs. She pushed the code blue button. The nurse came in and started doing chest compressions; at 5:38 he had no pulse of his own and wasn't breathing.
They did CPR, a million people rushed in, they couldn't get him intubated. They got an LMA in (which is a disc that holds the airway open so they can continue to get him oxygen, it's just not as invasive. He still wasn't breathing, so they continued bagging him and pushing epinephrine. He got compressions for a little over a half an hour, and he was finally intubated around 6:15. Oakley had technically died, and was resuscitated.

so swollen

With resuscitation, depending on how long the body goes with inadequate oxygenation, there can be lots of really bad side effects. Brain damage, organ failure or damage, broken ribs, death, all sorts of things you never want associated with your child.
Brain damage was immediately on the radar for Oakley; it can take up to 3 days for brain swelling to have it's full effect. He was responsive Friday morning, flailing his arms and legs with purpose (trying to rip out his tube), and tracking people with his eyes. They wanted him to be less sedated than usual for an intubation, so they could continue to monitor his mental status. His CO2 was over 100 on his blood gas. Friday night, he was starting to swell. His arms and legs were still responsive, but his eyes were barely able to open. His blood gas had dropped significantly, down to the low 50's on his CO2. Saturday morning; 24 hours post event, and he's still neurologically looking fine. His kidneys, however, aren't looking too hot. He's got sediment in his urine, and he's getting to be more and more fluid positive because he's not urinating enough. We can't give him his diuretics, because they're so bad for his kidneys, and they really want his blood pressure to be high enough to give his brain ample blood and avoid brain damage. His blood pressure had dropped tremendously with the cardiac arrest, and was just starting to be at the level that's normal for a baby (not normal for Oakley-still low for him). His blood gas started to rise a little (63 on his CO2) and they don't know why. We still have a roommate, which is weird since he's immuno-suppressed and supposed to be kept far from other children. Our roommate has 3 sisters that don't have leashes, and they're between the ages of 1 1/2 to 4. We asked for a separate room, but they're so full that they're turning other kids from other hospitals away. Also, it's RSV season, and if a single room opens up, they'll put a respiratory case in it. (whatever, they want us to stay away from kids, but they stick us in a room with another kid with siblings-walking disease factories...makes total sense.)
Sunday morning: swelling is awful. He even has pockets of fluid between his scalp and his skull. He is so fluid positive that not only are his hydroceles back in full force, but his penis is starting to follow suite. He had some desaturations, and his blood gas is still higher than it should be (63). Noone knows why, or what to do.
They did a wash in his lungs today, they pushed in 10 cc's of sterile saline, and pulled 6 cc's of junk out of his lung. It was a little bloody, but mostly looked like clear-ish fluid and then a hunk of what looked like snot. No word back on any of his other tests.
So, the good news: Oakley's alive. He wasn't for about half an hour Friday morning, but he's alive right now. He's not out of the woods for brain damage yet, they'll do an MRI toward the end of this week to look and see how everything is working. He looks like a stuffed sausage about to burst it's casing. He can't open his eyes,  his neck is even swollen so he has limited movement. His kidneys aren't looking so good. He has gained a full kilogram since Friday at midnight in fluid weight. His blood pressure had a pretty significant dip today, but is now back up in the therapeutic range. We don't know what to do right now. We don't want to get our hopes up and have them dashed. We thought we'd be outpatient by now, and now we don't even know if he'll be coherent on Christmas morning.

Not the Christmas package we were hoping for...bu dun psh!
The white tube exiting his penis is a catheter.

Now, more than ever, we need prayer. We haven't sacrificed our lives and our sanity for the last (almost) 8 months just to lose our son due to inhaling his own puke. We are angry at this hospital, at the fact that it's supposed to be the 8th best children's hospital in the country-yet we feel that half of the staff is inept. We are working with insurance to see if we would be able to move Oakley to Boise for his post-transplant care because we are just so frustrated with everything. We won't know for a while, but Oakley won't be stable enough for a transport for a few weeks anyway. It's hard to think of the peace, joy, and cheer that are usually such a big part of Christmas for me, since I feel so bitter about what the weekend has brought.
Sorry for having such a sobering blog post. I wish I could include pictures of Oakley on Santa's lap, but I don't think it's going to be happening this year.