The boys are 6 weeks old today! The last couple days have been eventful ones. We'll start with Sawyer, who, within the last 24 hours has had some great progress: first bath last night (and now the fuzzy hair looks extra blonde!), he's again off the nasal canula and is doing great breathing on his own, AND he got promoted out of his isolette and into an open air little crib! This means he can regulate his own body temperature and is thus another step closer to going home. Yah!
Jacob has had a fairly good week. Overall he seems to be feeling well and has great times of alertness. (Unfortunately none of these moments get captured well by the camera since he's usually in his isolette.) He had a few protein plasma doses over a week ago and since then the protein levels in his blood have remained stable, so again we're grateful for his body's response in managing his protein leaking. The protein in his urine has gone down some and his swelling is almost gone. His UTI never progressed to something terrible (thankfully!) and so today he was able to start the steroids as a step to treating his kidneys. We are praying this works, as it means his kidney issues are most likely curable. He will be on steroids for 2 weeks and we're praying especially that he'd be protected against the potential side effects - ulceric stomach and suppressed immune system. He'll be on Pepcid and an antibiotic preventatively because of the side effects. We should know within the 2 weeks if this is working and thus if he has Minimal Change Disease. He also had some genetic testing done, so if he doesn't have MCD, we should know the results of his genetic testing in 2-3 weeks.
He is still on the ventilator to help him breathe, but the doctors have been talking for weeks about trialing him off it. Well, yesterday they did it with no success. It was a traumatic hour for him (and me!) as his vent tube was taken out, CPAP put on, a miserable Jacob wheezing and struggling to breathe through a tiny airway, and then a couple attempts to put the vent tube back in. It turns out that his lungs are most likely strong and capable to be off the vent, but he has a lot of swelling in his vocal cords and throat from having that tube in there for almost the entire time he's been alive! The solution for the swelling is steroids - so the idea is that the ones he's just recently been put on for his kidneys should help with that. Consequently, tomorrow they'll take him off the ventilator again ... hopefully with some success, in which case he'll be on CPAP (the snorkel gear). We're really hoping and praying this is successful! We can't WAIT to have him off the ventilator at long last - and to be able to hear him make noise again!
I think that's all the news for now. We're especially excited to share the photo with the boys together. It's the first time they've been together since they left the womb!
No comments:
Post a Comment