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.
Friday, August 5, 2016
August 5, 2016
Zeke has continued to do really well throughout the week. He did have to be reintubated the beginning of this week because his PH was going down and his CO2 was rising. He's done awesome on the ventilator since then and he's already back down to a pressure of 15/5, rate of 20, and 28% O2. They're already talking about extubating him again, probably the beginning of next week.
He hasn't had any issues with his feeds and is now up to 45 CCs every three hours. They're increasing the feeds by five every 12 hours so barring any issues he'll be up to a full feed (65 CCs) by Saturday.
The pump was been running amazingly well. The new catheter that they placed in his chest is awesome. He's been able to change positions all over the place without effecting the pressure in the pump. Most importantly, he hasn't had any bleeding since they placed it. This new flexibility has allowed them to start doing physical therapy to get his muscles working and try to loosen up his arms and neck since they've always been stuck on one side.
One of the nurses is fairly brave with her positioning of Zeke. He's been able to lay on his stomach for a while and she even got him sitting up in his boppy. He seems to like the new variety in positions.
This coming week we'll be having a meeting with all of the department leads to try and figure out what the next steps are going to be. We've been getting somewhat conflicting plans of attack going forward so it'll be easier to get all the different specialties together to talk about the plan for Zeke.