Well, last night was a tough one. I had been to a doctor's appointment that day, and was gone for much of the afternoon, but when I got back to the hospital, Oakley was playful and happy and had just eaten a little bit from a bottle. Trevor and I ate dinner, and then we all cuddled in on the window seat bed to watch some tv. We had noticed the back of the little guy's head is getting a little bit flat, so we laid Oakley on his tummy while we were there with him. Around 10, I fed him (after he got his Lovenox shot and was a little cranky), and he was scarfing. We have been nursing in different ways, because he was resistant to nursing a couple of weeks ago, so we are trying to make nursing a super comfortable and soothing experience. So, Oakley and I were laying side by side, while I nursed him, and he started acting like he was going to throw up. This is a fairly normal occurence for him, especially on Bactrim days (Bactrim is a med he gets on Mondays and Tuesdays as a prophylactic against PCP pnuemonia). I raised him up, and his lips looked like they were turning blue, and realized he wasn't breathing. I told Trevor, and he called the nurse while I tried to get Oakley breathing again. He started breathing after about 10 seconds, and the nurse came in to check him out. While she was there, he did it again for 10-15 seconds. It was really weird, because he wasn't acting like he was struggling to breathe, he just was acting like he forgot to...and he was super calm, just turning blue. She called another nurse in and they called the doc on call, and they hooked him up to some monitors to watch his heart rate and respirations and O2 saturations (the amount of oxygenated blood getting to his extremities). He was getting pretty mad, because they were checking his blood sugar, and poking him and prodding him to try to figure out why he had done this. We thought he might have sucked his zenpep down his trachea instead of getting it into his stomach, or that he had aspirated some of his food, or even that he was getting acid reflux issues. We put him on a foam wedge, but then he got a hive-like rash. He was given Benadryl to get rid of it. They wanted him to calm down, so they could get a better idea of what was going on. They had me hold him and rock him, and he nuzzled in to try to sleep, the Benadryl was definately kicking in. The nurses started talking and Trevor and I were joking about how Oakley sometimes does inexplicable things, and then they go away. His left leg that keeps swelling up and turning red or purple, his rashes that come and go, in the past he's had random fevers that go pretty quickly, etc.

I noticed he wasn't breathing again, and pulled him away from me to look at him and show the nurses. This time we blew in his face, rubbed his feet, shook his arms, but he still didn't start breathing. They called a code blue, and people rushed in from all over the hospital. They put on an oxygen mask and started pumping air in and out of his lungs manually. He had gone 30-45 seconds that time. Chaos ensued in his room. Respiratory therapists looked him over and poked and prodded, his pupils were checked by 5 different people, the ICU team came and looked him over and over. He was breathing on his own again, but was exhausted. He was breathing heavily and grunting a little, and his head was bobbing with his breaths. Trevor and I just attributed it to the Benadryl and the exhaustion, but they said they'd check him in 2 hours to see if he was stable enough to stay on the transplant floor or if they needed to move him to the ICU until they tested him in the morning.
When they came back, he was breathing pretty normally, but they wanted him to go up to the ICU for the night just to make sure he was going to be ok. Trevor and I were exhausted, and wanted him to be able to stay, so we could get some sleep-he was on monitors now-but they insisted. They don't intubate on the transplant floor, that's something they only do in the emergency room or in the ICU, and they wanted him to be in an accessible place so there wouldn't be chaos if he needed breathing assistance.
We moved up to the 4th floor, giving up our suite-hopefully just for the night- and while the ICU team was admitting him and poking and prodding and examining-he woke up, and stopped breathing again. This time was different than before. He turned very pale, looked off and then went stiff as a board. His arms and legs were straight, and then he arched his back. They thought it was probably a seizure, and they gave him Adovan. They wrestled him down and got a bag on him, to get him breathing again, and decided to have a CT done on his brain immediately, instead of waiting until morning.
As we entered the CT scan room, he stopped breathing again, and they couldn't get him to start again, even after bagging him for a while. They decided to intubate him, which means they pumped him full of pain killers and muscle relaxers, then put a tube down his trachea for a ventilator to pump air in and out of his lungs. The first doctor tried twice (they had to take the bag off his face while they tried), then the second doctor tried twice. I don't know if there's a timeframe in which they have to call a code, but they called another code blue, and kicked Trevor and I out of the room. They sent a social worker to talk to us while they were intubating, and she incorrectly told us they were having to do chest compressions and bagging him while they tried to intubate him. That freaked me out. I asked her if he was dead and they were trying to resessitate him. She didn't seem to know, and Trevor and I  got pretty scared. She came back in and told us they finally got him intubated, after 10 minutes. Instead of talking to her, I went back into the room and asked the doc if they really had done chest compressions, they told me no, his heart had never stopped, they just had trouble intubating him.
With Oakley intubated, and still having episodes, Trevor and I gave in to the realization that we wouldn't be able to keep our huge room on the transplant floor. We went down and packed up our stuff and loaded it into our car. After we got everything out, we had to drop a couple of things off in the ICU, and we wanted to see Oakley and meet his nurse (it was 7 am at this point, time for shift change). They wouldn't let us back there, because they were doing a sterile lumbar puncture, but they did let us know that the CT scan looked good. They were worried he might have a brain bleed or a blood clot, but it was clear. The lumbar puncture was to look for meningitis or encephalitis. Trevor and I went to our room at Ronald McDonald house, and I slept there for the first time in the 16 days we had been here.
We came back this afternoon, and met with the neurologists. They're the ones who will get to decide when Oakley can be extubated (which he needs to be before he can move back to the transplant floor). They did an EEG today, and they want to wait on the results of that before they can make any decisions. They think he may have had a seizure, but that it was likely caused by his blood sugar. They don't want to put him on seizure meds, but if his EEG comes back that there's a problem, then they will. He had an MRI that looked great, so we're really just waiting on the last test. They have kept him sedated the entire time, so he's been out for about 20 hours now. It's so hard to see him all hooked up to tubes and not get to hold him or see him smile. It's like reliving his birth and the first couple of days with him all over again, but it's harder, because now I'm used to being spoiled and getting to see his smile.


the face I'm missing right now



The nurse and I just spoke, and Oakley's been fidgeting and seems uncomfortable, so they're starting him on a morphine drip to keep him further sedated. I am going to now spend the night at Ronald McDonald, and it already feels bizarre.

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