We woke up this morning to a line that would flush and work but not draw blood. Hematology/oncology was consulted; they deemed the line safe to use, but we could not get the labs needed prior to surgery today. So a peripheral IV was placed (thankfully) in his right hand. Even though it didn't work properly, we kept it in after labs were sent in case the anesthesiologist needed it. We were told he was on the OR schedule for 12:50pm.
Between feeling like crud and his normal anxiety issues, the IV was a source of continuous problems all day for Keegan. 12:50pm came and went. He had been on strict orders of nothing by mouth since midnight because we had no idea when surgery would be. This was the first time in the last 4+ years that Keegan was able to (1) comprehend the feeling hunger and (2) express his desire for food to us. Heartbreaking. By 2pm, I told him to just close his eyes and take a nap, and the transport team arrived to take him to the pre-op area a little after 2:30pm. It wasn't until after 4:30pm that he actually made it to the OR. The procedure went well overall. The surgeon had to take some extra time, as this line was much longer than a usual port. It was actually in the femoral artery and tunneled across his chest. There was very little evidence of infection in his chest cavity, so they were able to clean it out and close him up, rather than leave the site open for healing.
This afternoon, the decision was made not to put an EJ line in while in the OR. With his current wound-healing/bleeding issues, there was concern that the jugular would collapse or clot off and be unusable for caths and treatment in the future. Crucial concerns for a heart transplant kid. So now he has a peripheral IV in his left hand and right ankle. This means he will not be able to walk until the next surgery. His autistic preoccupation with bandages means that he is completely beside himself over the new IVs when he is awake.
Luckily, most of tomorrow will be taken up by an MRI scan of his body and brain. The body scan will assess sites for the next port placement, and the brain scan will be to see if he has suffered any further neurological damage from the MAS since last fall. Because of the delays in the OR today, Keegan did not have the echo of his heart. That should be done tomorrow. As of right now, we do not have an OR time for Friday yet.
We have sedated him this evening to ease his anxiety, and we may have to do the same thing tomorrow. Please pray with us for Keegan's acceptance and endurance over the next few days. It is going to be rough for him. And a few prayers of protection for his kidney would be appreciated. It is showing signs of slowing down right now and is being challenged greatly by the antibiotics and anesthesia. Thank you so much for your support and love today. We are beyond grateful.