Our story of having a baby with posterior urethral valve syndrome.
A small part is the journal of the diagnosis and fetal surgery, and my time in the Perinatal Specialty Unit waiting for his arrival.
Mostly about his journey, his fight, and his strength in dealing with the struggles and hurdles his condition is throwing at him.
Sunday, July 31, 2016
July 31, 2016
Zeke is 16 weeks old today, and his weight overnight was 3880g (8lb 9oz). He's had a really good last part of the week. He's been here in Birmingham for 108 days now, in addition to the 4 he was in Pensacola. He's busted through so many barriers, and has made it farther than anyone really expected him to.
They started breastmilk feeds on Thursday. He started out at 5ml every 3 hours. Friday they increased that to 10, and Saturday, they decided to increase by 5ml every 12 hours. Right now he's up to 25ml, and seems to be tolerating it well. He's having a decent amount of urine and stool output, and seems to enjoy having something in his belly.
If you didn't see the picture I posted on Friday, they decided to extubate him! His blood gasses were really good, and have been consistently for a few weeks now, and he was really as low as he could go on his vent settings. He's on nasal cannula cpap, and doing very well on it. He's getting 20 puffs per minute, and the pressure is low as well (17/5). He's pretty consistently been getting between 26-30% Oxygen, and he's keeping his sats up and his gasses have been good.
The new line is working out well. Other than having a few positioning issues, and the occasional high pressure in the lines, there have been no issues with bleeding or anything else at this point.
They came in to change his dialysis pump yesterday (Saturday). Dr Askenazi came in - it's the first I've seen him in a few months. He seemed very happy with the progress that Zeke has made, and is excited to get him moving on to other things.
** Just to explain the dialysis pump a little bit, there is quite a bit of tubing going from Zeke, to the pump, through the pump, and back to him. This tubing is filled (primed) before they start the dialysis with either donor blood or the blood from the tubing from the machine he's switching from, if the baby is under 4 kilos, or if the baby is bigger, they can do a saline prime. It's all dependent on the percentage of the total blood volume that's in the tubing. Lots of math that I don't really understand and can't explain. Anyway, they've always had to do a blood prime. Dr. A is hoping that in the next week or two, they'll be able to start using saline to prime, rather than blood, which is better for a few different reasons.
Every time Zeke is exposed to donor blood, he's exposed to the different proteins, etc... in that blood. The more transfusions/blood primes he receives, the chance of donor kidney rejection increases. Another medical thing I don't entirely understand, but the risk is there. So not needing to blood prime the pump every time will be a huge help for him.
Also, right now, the way they do the pump change, in order to try to keep him from needing new donor blood every time, is taking the blood from the tubing on the 'old' pump, and feeding it into the tubing for the 'new' pump. Blood clots easily and quickly, even with the heparin he's receiving to help the dialysis, and it has to be a fairly quick change to make sure the blood doesn't clot before it starts flowing in the new pump.
When they can start saline primes, they won't have to worry about the blood clotting, and Zeke will be able to be off the pump on change days (every 3 days). This will give him a chance to have PT/OT come in and work with him to try to get his strength up, give him time to get out of his bed in the same position (because the lines are pretty picky, and like him to be in literally two positions - on his back with his head more to the left, or on his left side... causing the left side of his head to be extremely flat, and the muscles on the left side of his neck to be really tight), and will give us more opportunities to hold him.
They also talked with neonatal and renal yesterday during rounds about letting us hold him more, even hooked up to the pump, as long as it still flows and he doesn't have any issues. They both agreed that it would be beneficial to him to be held, and everyone's ok with it, as long as it doesn't cause issues with the dialysis or the lines.
We're really excited about him potentially being able to start working with pt/ot. Hopefully they can help fix his head without a helmet (although, I very strongly doubt that...)
We're so thankful for the prayers and kind thoughts from all of our family, friends, the amazing command at Gary's work, and our other supporters. And the staff here at Children's has been amazing. We absolutely LOVE the nurses, practitioners, and doctors here! They've made this whole ordeal so much more tolerable. We love you all!