Saturday, April 16, 2016

April 16, 2016

I have a few minutes to type up another update.
Wednesday afternoon, we had another meeting with some of the doctors. They said that they had talked to the doctors in Birmingham, and they were willing to accept Ezekiel. This was huge, because Monday and Tuesday they had asked, and had been told no both times. They weren't willing to take on a 'lost cause', basically. So the fact that he was doing well enough on Wednesday that they were willing to take him and try, was huge.
We were basically given an ultimatum at that point. There was nothing else they could do for him in Pensacola. His toxin levels were rising, and there was nothing they could do to help that. The only thing they could offer us was to keep him on support until we were ready, and at that point, remove him from the support and spend whatever time he had left - minutes, maybe hours - with him, holding him, take him outside, etc...
They weren't totally convinced he would survive transport. Even if he did, they had never successfully done dialysis on a baby this small. They had never even attempted a baby his size. We were looking at a zero success rate. Even if he could withstand the dialysis, they gave him less than 5% probability of surviving to a year.
Five percent is better than zero. One percent is better than zero. We would take the chance that he MIGHT survive transport, that he MIGHT be able to tolerate dialysis, that, by some miracle, he MIGHT live to see his first birthday if we transferred to Birmingham, over the knowledge that if we chose to stay in Pensacola, none of these things would ever happen.
We took Wednesday evening to weigh the pros and cons of both options. Would it be better to keep him comfortable for the rest of his life and let him go? Or should we try to save him, knowing how much he would go through in his life. How much poking, prodding, how many procedures, etc... he would endure. We chose life, as we have since we first found out about his condition.
They flew him to the Children's hospital at UAB on Thursday afternoon. Gary and I drove up that day and arrived around 9pm. When we got here, they were already running some tests and getting things ready to start hemodialysis. They inserted a new catheter into his umbilical artery for the dialysis, which sometimes will work, but a lot of times they'll have issues since the dialysis catheter is so much larger than the typical umbilical catheter. They got it in with no problems.
That night, they also tried again to insert a catheter into his bladder and couldn't get it in, so they inserted one surgically through his abdomen just above his pubic bone.
Around 11pm they began prepping for dialysis - blood transfusion, starting machines, getting fluids ready, etc... They finally started the machines at 2am. It was surreal, several doctors, nurses, and other people standing here watching, hoping it would work. They told us that generally, when dialysis is started, the baby's vitals will change - heart rate, oxygen saturation, etc..., and with him, nothing changed. They couldn't even tell from looking at him that they had started. Gary and I didn't sleep much, if at all that night. Nurses and doctors were constantly coming in to check on him, check the machines, etc... He is the smallest baby they've ever tried dialysis on at this hospital, and so far, he's tolerating it extremely well. Right now, they're doing in=out, so they're not pulling any extra fluid from the blood. They're waiting to make sure he tolerates this well. He's receiving Albumen, which helps draw extra fluid from the tissues into the blood, which will hopefully bring some of his swelling from water retention down.
Yesterday during rounds, they ordered a few tests. They did a head ultrasound to look for brain bleeds (which can happen with any preemies, but especially if they're on blood thinners, which is is for the dialysis), another chest xray, and some other blood tests. The head ultrasound showed a mild (grade 1) brain bleed outside the ventricles. They're not super concerned at this point. They'll do another one at 30 days, but said that the majority of brain bleeds happen in the first week. The chest xray showed that the chest tube they had inserted to relieve the pressure from around his lungs had moved and was no longer working to suction, so it was basically doing nothing for him other than adding another source of potential infection, so they decided to remove it. They also added a PICC line (in his left arm) and another IV (in his head), to give extra blood, medicine, fluids, etc... They have him on iv fluids, lipids (fat), a fluid to add extra calories, as well as the dialysis fluids.
When we came in this morning, they had decided to start giving him oral feeds (through an oral/gastric - og - tube). Right now he's getting an extremely small amount - 1mL per hour - but so far he's tolerated it without spitting up or any other problems. The nurse said that since she started that, he seems to be a bit more content and less restless.
His temperature is up and down, so he's got a little heater underneath him, in addition to the heated air in his isolette.
He's a little jaundiced, so they started him under the lights this morning, and have the shades on his windows open so he's getting some sunlight as well.
He's had to receive blood because his hematocrit levels are dropping from the dialysis, but they said this is normal.
He's still on the ventilator, 60 respirations per minute, at 42% oxygen.
The goal here, is to continue hemodialysis (cleaning the blood) until he's big enough to receive peritoneal dialysis (where they put fluid into his abdominal cavity through a port, the fluid cleans the blood via the capillaries, and they drain the fluid and add new). They'll do this constantly in the hospital until he's big enough, and at that point he'll be able to come home and just do it at night. This usually doesn't happen until the baby is the size of at least a 6 month term baby, so it could be quite a while before he's able to come home.
Now that things are more settled, I'm going to try to be better about updating daily. Things will change a little bit here and there, but we're hoping that everything will stay as stable as it is, and just get better.


April 14
Moving Day





April 15
Crazy setup at Children's of Alabama



April 16
Getting a suntan


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