June 21, 2016

Zeke is doing pretty well lately. We've had a few ups and downs in the past few days, but nothing extreme.

His weight has fluctuated quite a bit, but he's still looking really good. It just depends on the amount of fluid that's pulled off or left on. Yesterday he was 3090g (6lb 13oz), today he's 3300g (7lb 4oz). His last length measurement, he was 49cm (19.3in), and at birth he was 40cm (15.7in).

He was completely weaned off his Fentanyl drip on 6/4, and moved to Methadone. His last dose of Methadone was this past Thursday (6/16). He's still receiving small doses of Fentanyl prn (as needed), and he's still on a small amount of Versed in his IV. Since coming off the Methadone, he's been so much more awake and alert. He hasn't needed a ton of Fentanyl, only when he's been seriously agitated, or before a procedure. He's been awake for an hour or more at a time a few times a day, and has been looking around. He seems pretty annoyed that he can't move his head because of the vent tube, but he tries really hard to look around.

He's been pretty stable from a respiratory standpoint. The past couple of days he's had a LOT of secretions in his tube and a lot of drool, causing him to need to be suctioned a lot. His blood gasses haven't been great, and because he's needed suction so much, they've gone up slightly on his rate (he's at 30rpm) and pressure (he's at 20/5), but his oxygen requirement has stayed under 30%. Because of the large increase in respiratory secretions, they've decided to send some of the mucus/saliva to be tested for a viral respiratory infection. They're just doing this as a precaution, because the secretions have been clear, but they want to make sure there's nothing serious causing it.

Surgery and Nephrology spent the last part of last week and the weekend calling their supplier, manufacturer, and other children's hospitals, trying to find a permanent, subcutaneous/cuffed dialysis catheter. When they replaced Zeke's vascath on the 10th, they wanted to replace it with the cuffed catheter, but it was too long for his body. These are placed with the access in the chest, then tunnel under the skin up to the neck, where they insert into the vein in the same place the vascath is inserted. The smallest ones they currently have are 18 inches long, and that would put the access point near his colostomy, which is obviously less than ideal. They placed the vascath, in hopes they could find a smaller cuffed catheter. They told us on Sunday that there isn't a smaller version that's been approved in the US. There is one available in Europe, but it's not approved for use here. So we just have to wait for him to grow enough for the ones available here to fit him.

Sunday was pump change day. That morning, surgery came in and checked the stitches on the vascath to make sure it was secure before they changed the pump. While they were here, the pump clotted, and they had to get new blood and other meds to prime the new pump, instead of being able to just use the blood that's in the old pump and transferring it to the new pump. They've kept him at -5 (leaving 5 on) on the pump, because his vitals have been stable.

Over the weekend, he started having a liquid discharge out of his mucus fistula (the place where the lower part of his intestines are sewn to his abdominal skin). This coincided with a huge decrease in the amount of urine that was coming out of his catheter. They tested the fluid, and decided it was likely urine. They said that because the bladder and intestines are right next to each other, it may have created a fistula, or a connection, from the bladder to the part of intestine that drains from the mucus fistula. Right now, they're just keeping it covered with gauze, and changing the gauze every couple of hours. Urology came in and flushed the catheter, because the few times we've had no urine output, there's been an issue with the catheter. It flushed fine. They ordered a VCUG (voiding cystourethrogram), which is a test where they insert a dye into the bladder and do xrays to look at where the dye/urine is going, and look at the anatomy of the urinary tract. They're going to do it tomorrow (Wednesday), since it's pump change day anyway, and they can just do the test while he's off dialysis, meaning there's one less piece of equipment for them to have to take down to radiology.

On Sunday, they decided that the plan was to extubate on Monday and see how he did on just CPAP. They decided to wait until after his VCUG to extubate, because they have to take him to another floor for it, and they don't want to have to do an emergency intubation if something happens while he's there. So the plan, as of now, is to extubate sometime tomorrow and see how he does on CPAP.

Last night, we noticed a puffy area on his abdomen between his mucus fistula and catheter. They're thinking it may just be a pocket of fluid or something. They did a chest/abdominal xray last night, and nothing looked super abnormal, so we're hoping to get some answers from the VCUG tomorrow.

All in all, he's doing well. Much better than we'd expected. Prayers work.