The Burlingames

Last night was a much better night for all of us. Eli dozed much of the evening and woke up for about 30 minutes at 10pm. He was wide awake and chatting with me. It was good to see him awake and alert.

He slept really, really well during the night. The nurse woke him up once to eat some graham cracker, he ate about 1/2 of it with no problem. At 5:30am they came and took a chest x-ray, the result from the x-ray was good. There had been some fluid on his lungs, but that is gone now. When the crew of doctors came in this morning, they decided to take out his chest tubes and are weaning him off several meds and his oxygen. The goal today is get him to sit up more and be more wide awake, they hope this will help his oxygen levels to improve and maintain.

Dr. Moga came back later to take his chest tubes out he noticed a little air bubble at the top of the tube. They hope it can work its way out and they can still take out the tubes later this afternoon.

I’m anxious for him to have the chest tubes removed so we can hold him again. We haven’t gotten to really hold him since early Tuesday morning, that’s a long time. He is resting well for now.

Thank you again for all your prayers.

I’m not going to lie, it was a semi-rough night of sleep. Dave got a few hours in while I sat up with Eli until about 2am, then we switched until Eli fell asleep.

Eli would doze for 10-15 minutes, wake up and request a drink, then fall back asleep. I was unable to sleep during this time. As soon as Eli would get settled, I would get settled and then he would wake up again. It was a vicious cycle for about 3 hours. He did get to drink some water, juice and a little bit of milk.

During the night they gave him some more diuretics, the doc was concerned about some fluid build up on his side. There was talk of possibly needing to put in another small chest tube to drain the fluid, but it was decided that was not necessary. PTL! They did give him some more sedation to help keep him calm. So far he’s been doing alright.

There was talk of removing his chest tubes today, we’ll see how that goes. There was also talk of allowing him to eat some food. So, we’ll see what they say. I’m just floored at how well he’s doing. I’m so proud of my little man. I was feeling a bit like a failure at being his mom last night, I had hit my limit and needed to give his care over to the nurse and Dave so I could rest. It was hard on my heart, but I also know that I need to take care of myself.

This is my view at the moment.

Eli is settled in his room. He’s doing fantastic! At about 4:30pm he started waking up, they wanted him to wake up some before taking out some tubes. Yep. They already took out some tubes…on the day of surgery! Yay!!! He is off the ventilator and the NG tube. He’s been awake on and off since having the tubes removed. Each time he stirs awake he asks for something to drink, unfortunately he can’t have anything for 4 hours after the ventilator is removed. For now he’s just resting.

Here he is post surgery. At this point he was out of surgery for about an hour.

Here he is with less tubes. He already looking tons better.

Thank you so much for all your prayers, encouragement, love and support. We really truly appreciate it.

Dr. Moga (the cardiologist surgeon) just came in. He said everything went great. They did the Fontan procedure and put pacemaker leads in as well. Eli is on his way to his recovery room and we’ll be able to see him within the hour.

The reason for the pacemaker leads is because Eli’s heart rate does not increase enough when under stress or pressure. EX: His heart rate should be between 70-137 at normal, resting rate. Yesterday when he was having blood drawn (a slightly tramatic experience), his heart rate only increased to 130. Dr. Moga said the same thing today, during surgery his heart rate stayed fairly platonic. The leads are there for future purposes (just in case), so they won’t have to do another open heart surgery just to put the leads in.

Again, thank you so much for your prayers. We appreciate it very, very much!!