Day 4 Post-op

Last night was somewhat okay as far as sleep goes. Ethan was very fussy until about 1am when he finally agreed to take Tylenol. Then he seemed to calm down a bit and get some sleep. He only woke up a few times until a big wakeup at 5:30. He was in a lot of pain in his chest and back, his legs were hurting him, and he was just miserable. He peed out his diuretics and ended up getting morphine because he just couldn't relax. Thankfully that helped out tremendously and he has been sleeping soundly ever since (going on 3 hours now!)

Right now he is receiving magnesium and potassium again since he is low. He has been having a lot of arrhythmias this morning (PACs every third beat for about an hour) so they think being low with these might be contributing to that problem. Hopefully it helps him out.**evening update** The potassium definitely did help out, so we just have to keep a close eye on his levels to make sure he doesn't drop much. Apparently he is very sensitive to mild drops in potassium!

We had big plans for today, but it was kind of a one step forward two steps back day. We had expected to remove the chest tube and move to the step down unit. Unfortunately after his arrhythmias this morning they decided to keep him in PICU for another day. We took a wheelchair ride to the fish tank again this morning. He was able to walk a couple of feet to the chair from his bed, then rode in my lap to see the fish, and ended up sitting with me in the chair back in our room for an extra 15 minutes before getting back in bed and going to sleep. He did so well!

After he woke up from his nap (about an hour later) things went downhill. He woke up in severe pain and went into acute respiratory distress. He was desatting to the 50s and was grunting, flaring and pulling hard while breathing, and his lactate levels spiked from 1 to 4. . It was so hard to hear him cry to me "Mommy can't you help me?" Thankfully we had a big crowd in here trying to help him out. We gave him lots of painkillers and meds to calm him. We also had to switch him from regular 2L of oxygen to the high pressure oxygen flow at 8L. That is what he is currently on still. We almost had to return to the CPAP machine, but as of yet he is doing well with the high pressure flow so hopefully we can avoid that!

**Nope! Just did night rounds and they want him back on CPAP. NOOO!!! They think that will be the best way to try and force open his lung. We are all dreading this for sure - especially since he is sleeping peacefully right now and doing well. We do have to wait until his blood pressures improve since they are currently too low. The chest xray showed that his left lung has atelectasis (is slightly collapsed). The docs think it might have collapsed a little worse causing him some of the problems. It also showed that his right lung now has fluid in it and a large gas bubble by his diaphragm. We think that was causing a large amount of the pain. In addition to all the other meds he received some gas relief, and the combination of all of that helped him calm enough to sleep. Since then he has felt a lot better so hopefully he will start passing some of this gas soon!

Ethan is once again looking and acting dehydrated. He is still receiving diuretics to help him pee, but hopefully we will be able to find the right balance between pulling this fluid off his lungs without dehydrating him. It has proven to be a tough thing to accomplish.

We are still working with respiratory therapy to try and clear his lungs. He breathes into a little vibrating machine throughout the day, blows bubbles, and has PD with a vibrating machine to try and break up the gunk in his lungs and open them up.

Basically today was mainly spent trying to keep his pain under control, convince him to cough and pass gas, getting his intake/output levels correct, and still move around a little bit even though he was exhausted all day. He definitely had his grumpy moments today, but that is totally understandable considering how bad he felt. Hopefully he will sleep tonight (even though we have that dreaded CPAP to deal with) and feels a lot better tomorrow.

Please pray for a smooth and peaceful night. Please pray that Ethan is ready to have his chest tube removed tomorrow (and pacer wires too) and move to the step down unit. He is really wanting to be able to leave for the playroom and to go on long walks. Unfortunately he needs to be able to be on regular oxygen and have everything else looking better. I pray that we can accomplish that tonight so he can have a better day tomorrow!

Thank you for all your prayers and support! Ethan is really wanting to go home (and of course so am I), so hopefully we can really move quickly in the right direction with this recovery!