We didn't get a lot of sleep last night. Ali set the alarm every three hours to pump. Brady was on a different schedule every three hours to eat. The nurse also stopped in the room every four hours to get vitals and add milk to his pump. We figure that we slept for two or three hours. I guess the lack of sleep is good practice for when we go home.
We had a class at 9:00 a.m. to go over reflux, the Danny sling, and CPR. Ali remarked how weird it was to be giving chest compressions on a doll five weeks after watching Brady go through a resuscitation.
After rounds this morning they made some changes with Brady. They removed his heart monitor and pulse oximeter. For the past couple of days they've also given Brady constant food through his J-tube. They started at 7 ml per hour after the surgery, moved it to 20 ml after a couple of days, and he was at 35 ml per hour yesterday. Today they removed the constant feeding and wanted to us to move to cue based feedings.
This meant Brady was completely free of wires and tubes for the entire day. Ali and I held him and walked around the room. We also spent time together just lying down on the bed and snuggling.
Ali and I also did all of the care of Brady today with the guidance of the nursing staff. We changed his pump bag and tubing. We gave him his medicine through his J-tube. It was a day to practice priming tubes, using syringes, and changing settings on the pump.
For feeding today they wanted Brady to eat 280 ml by bottle from 8 a.m. to 8 p.m. Brady had 295 ml throughout the day (including a couple of big feeds around 70 ml). He really did a nice job with his pacing and his suck, swallow, and breathe.
They will also feed him 40 ml per hour over 12 hours at night, so he will take 480 ml from 8 p.m. to 8 a.m. This amount will be adjusted if he feeds during the night.
We'll learn more during rounds tomorrow, but it sounds like they will set a daily amount (it was 760 ml today). We will then try to get to a certain amount during the day by bottle (it was 280 today) and then use the tube to supplement the rest at night (at a maximum of 40 ml per hour). Ali and I will need to brush up on our math skills to make sure we're feeding him correctly.
About the only negative is that Brady does sometimes spit his milk back up. The nurses think this is caused by the reflux and should get better over time. His wound around the G-J tube also looks pretty raw. The nurses said this is also common and should heal over time.
At the end of the night a doctor came into the room to do a physical on Brady. She was very pleased with his development and muscle tone. The doctor told us they are planning on discharging us tomorrow morning after they do rounds. We're hoping to be home around lunch time.
It's hard to believe it's taken us 38 days to get to this point, and we know we still have a lot of work ahead of us. It's such a blessing to be able to start a new chapter tomorrow. We can't wait to see the faces of Ava and Casey when they see Brady tomorrow. Thanks again for all of your words of encouragement and prayers. It's going to be a very Happy Easter on Sunday!
With love,
Tyler, Ali, Ava, Casey and Brady
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