Day 1 Post-Op

Morning:
Ethan had a fairly decent night. He was in JET heart rhythm around 1am for a short time, but went back to good sinus rhythm since then and has been stable for the morning. The docs were expecting arrhythmia issues due to his history of them with every procedure. He has had a fever of around 38.5-39 celcius since surgery. This is also not too concerning as his body went through a LOT in surgery. He is being treated with IV Tylenol every six hours.

Around 2:30am he started waking up due to his sedation wean with trying to prepare him to be extubated (take the breathing tube out). He was pretty calm for the most part through the night, just needing some rubs and reassurances that he was okay before going back to sleep. Around 4:30 he wanted the breathing tube out, so after a chest x-ray and more stopping his sedatives he was extubated at 5:30am. He was very scared and upset this morning. His throat is hurting him and he is incredibly thirsty. He was begging everyone who walks by his door for water. He was angry with me and the nursing staff for being mean, hurting him, and not letting him get a drink. He was crying and kicking around a lot so we had to give him some more painkillers and relaxing meds to help him out. Basically his major complaints are lack of water, a lot of pain from his chest tubes, he almost pulled out his foley catheter while kicking around, and he doesn't want to cough or take good breaths because it hurts too much to breathe. He keeps saying "I can't breathe" even though he is doing well...it's just a lot of pain and pressure so he feels that he can't breathe right and it is scary for him. The poor boy wants water, bacon, to not go to space, for the nurses to not be mean and say he can't have drinks, to get out of bed, and for them to stop hurting him. Hopefully he is a little happier the next time he wakes up!

During his angry morning his sats dropped to the 50s even while on 5L of oxygen. He was put on high pressure CPAP and that has definitely helped him out. He is back in the low 90s while sleeping again! We had to give him Ativan and more sedation to calm him down since he was trying to climb out of bed in search of a drink. The surgeon claims that since he still has Tetralogy he will still have a decrease in sats with activity, but hopefully it will be much less than before. It will just be a waiting game to see how his heart and lungs recover from the surgery before we really know what he is going to be like.

His lungs are wet and he has fluid around his lungs as well. Since he is so wet and we are getting a lot of blood and secretions out when suctioning his lungs we increased his lasix hoping to remove this fluid. He is thankfully peeing really well, so that is wonderful! He also needed platelets early this morning because his numbers were low. The surgeon said he had "torrential backflow with blood" during surgery so he lost a lot and needed some boosters.

The docs were not able to put his TEE (transesophageal echocardiogram) tube down his throat during surgery. They are concerned that there is some stricture, fistula, or muscle collapse/narrowing in his throat. This might explain some of the swallowing issues he has had over the past 6+ months. He had a ton of swallowing issues during his for few years of life (feeding tube, swallow studies, etc), but then had years of no problems until recently. The swallow study doctors just came through and wanted to test him, but obviously couldn't do anything yet because he is sleeping and on high oxygen support. They will check back tomorrow. If he is not ready then, we will look to do the study on Monday. He needs to be awake, able to drink, and off respiratory support for the test to be done.

Evening:
It has been a long day. Ethan has not been happy when he is awake, but thankfully has finally been allowed to eat ice chips and popsicles. That at least is keeping him somewhat calm! He is very uncomfortable and every time he starts getting upset he desats and has his stomach/chest hurt terribly. He also really wants to get up and out of bed because he is so uncomfortable from staying in bed for so long. He keeps complaining about his legs and back hurting. They are letting him take a break from the CPAP mask and he is doing wonderfully without it! He is happier and his oxygen has actually been in the upper 80s to upper 90s on 3L of oxygen! It is so amazing seeing him pink still - I don't know if I will ever stop staring at his lips! :)

I am going to go to sleep (hopefully) since I am pretty exhausted. Please pray for a wonderful, peaceful, sleep filled night for us. He has multiple medicine administrations throughout the night so hopefully he will be able to go right back to sleep after them.

A couple people have requested the mailing address for the hospital to send cards, etc. If you would like to the address is:

Cleveland Clinic Children's
9500 Euclid Avenue
#M43
Cleveland, OH 44195
Attn: Ethan Bradley
Rm 6 PICU

He loves to get mail, so he would be thrilled about this! Thank you! I will post another update tomorrow!