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.
Tuesday, August 30, 2016
August 30, 2016
Ezekiel has done really well over the last week with only a couple issues. He does have a big day tomorrow as he’s getting another surgical procedure done. His ventilator settings have stayed low throughout. He’s currently at O2 of 36%, rate of 20, and pressure of 21/5.
The biggest concern these last two weeks has been the infections. He had a positive blood culture last week that they started treating, but all his cultures since have come back negative. Since it was yeast infection, they’re going to continue to treat for another 10 days. They conducted a bronchoscopy last Wednesday (8/24) and the culture from that came back positive for strep and klebsiella. They started him on another antibiotic to cover it, but they’re not too concerned as it’s a lot easier to treat. It typically leads to pneumonia, but they caught it pretty early and started treatment so they’re not too concerned about it advancing. Now none of the infections are going to delay his surgery, so we’re still good for tomorrow.
The doctors conducted a bronchoscopy last week to try to see what was causing his difficulty in staying extubated. While exploring his airways they saw that his lungs have actually recovered very well and that’s not causing the problem. He actually has proximal bronchomalacia, which essentially means that the cartilage in his upper airway is not very rigid and is collapsing inward. That’s the reason that he struggles to breath once they pull his tube out. The ENT docs decided that the best thing for him is to get a tracheostomy which will allow them to reinforce that airway while getting the ventilator out of his throat. It’s another surgical procedure they’re going to do, but it should help him get to the point that he can get off the vent completely.
The surgery is going forward tomorrow and is going to consist of a couple different procedures. First, the surgeon is taking a rectal biopsy to make sure that he doesn’t have any mobility issues in his colon (Hirschsprung’s disease). Then the urologist is going to give him a circumcision so that he has access to the urethra. They’ll conduct a cystoscopy to see how the bladder looks and try to remove any obstructions in the urethra that’s preventing the flow of urine. If that doesn’t work, he’ll do a vesicostomy (install a drain from the bladder). The surgeon hopes that once they open up the preferential drainage for the bladder, that the connection between the bladder and colon will close up on it’s own. Following all this, ENT will install his tracheostomy. Right now the tunneled dialysis catheter Zeke has runs across his throat and they still have to confirm that it’s not going to cause any problems. That’s currently still up in the air and they have to do some more consulting with surgery.
As Amanda mentioned last week, he’s been having some gut issues. He’s been very irritable and has had a ton of gas out of his ostomy and in his intestines. They took a KUB (abdominal x-ray) Saturday and it showed massive amounts of air in his gut. Sunday morning they took him off breast milk and put him back on IV nutrition. They’re not sure what’s causing the issues (we think it’s the fortifier they’re adding to milk since all these issues started when that began). They’re just going to keep him off until after surgery.
The travel and stress of dealing with his hospitalization and the fact that he will be here for many more months has led us to request a compassionate reassignment from the Army. The nephrologist team has already spoken with the docs at John Hopkins in Baltimore and they’ve agreed to take Ezekiel. We’re now working through the process of getting the Army to approve my reassignment to what we call the NCR (National Capital Region). There’s a lot of assignments available up there and it will make life so much easier to be able to close to the hospital where Zeke’s at. Now we just have to try and get all our stuff together, sell our house, and find a new one in the next 2-3 months. So if anyone’s looking...