Super-Hero

Ethan is hanging in there. This surgery was a lot HARDER on him than we expected. I talked with a few people who have had these procedures and they said it was rough. But most did not have ALL the procedures at once. The staff keeps reminding me that he will be much better soon, but that he was not in the best "place" going into the surgery. He was looking a lot better the morning of surgery, but he has been fighting for his life the past few weeks. Although he has made many improvements, he was not out of the woods going into it. Thus the recovery is going to be harder on him.

Don't worry, he is doing well. Ethan just came back from the OR in TONS OF PAIN and looking like he had been in the ring with Rocky. He is so tolerant of his sedation and pain meds that they had to majorly increase them after surgery. So today they decided they are not making any changes. They want to keep him sedated and comfortable. If all goes well they will start feeding him tomorrow and trying to wean the sedation and ventilator. I am not in a hurry though. I want his pain to be under control before we push him too much. He has been through too much, and he is still fighting. . . what can I say. . . He is my super-hero!

Much love-
Heidi

Surgery Went Well

Ethan got back from surgery around 4pm. It started late and took twice as long as planned, but went well. Ethan did great, it just took longer to perform the procedures than planned. Since they were working on two sides of his chest and his back, there was a lot of moving involved. They have to re-prep and sterilize him every time they move him. He had scar tissue cleaned out of his pleural spaces, new chest tubes placed, a thoracic duct ligation, chemical pleuraldesis, and a new central line placed. (You can google any of those procedures listed above if you would like more details :) It will take up to 48 hours to really tell if the procedures are helping.

This surgery is nothing in comparison to his heart surgeries, but he sure looked banged up when they brought him back. It is never easy to see. But the funniest part about seeing him after ALL his surgeries is Greg. Daddy asks the same question EVERY time, "When can he get his foley catheter out?" (for those fortunate enough to not have experienced one, it is the catheter put into his pee-pee to collect his urine AND is the LAST thing anybody is concerned about. . .except daddy of course).

Thank you for your words of encouragement!

HMMMMM

I am so torn. Ethan's drainage has picked up a little more today. His right chest tube is not draining, but is now showing signs of fluid build up compressing his right lung. The doctors have given us two options. Since he is definately slowing, we could just place new chest tubes to allow for better drainage and wait it out. He will still not get real food during this period and it could take AWHILE!

Or we can go to surgery as planned before. It will take his body a few days to recover, and it will be a bit painful for him. . . but they won't leave the Operating room until they have all the fluid build up out of his lungs. That means his lungs will be able to fully expand and hopefully after about a 48 hour recovery he should be able get off the ventilator and start getting fed. (Hopefully)

We don't want to put him through anything too invasive again, but we have decided on surgery. He has had this leaky lung problem in some way or another since he was 27 weeks in utero! We are so over it. Not that it is a sure thing, but we are willing to try it.
Thanks for the continued love and prayers-
Heidi

Drainage Has Slowed. . . Again!

We are very hopeful right now. Ethan decreased his chest tube output to an average of 10mL an hour starting at 1am. They are doing chest x-rays every 6 hours. The most recent one at noon shows no new build up in the pleural spaces. The surgeries tomorrow have been put on HOLD. We are hoping Ethan is truly getting his "leaky lungs" under control all by himself! Since they are not having to give Ethan so much fluid to make up for the drainage, we are hoping his body will now be in a position to heal and move forward. Greg and I are overwhelmed with gratitude right now. If the output picks back up they may still do the surgery Monday.

Greg has become EXTREMELY protective of his little baby boy these past two weeks. Greg asked me not to post pictures of Ethan in his current condition. He has hardly left his side and has continued to pray, fast, and be optimistic. His attitude has carried Ethan and me through this time, as well as the prayers and faith of all of you.
Thank you-
Heidi

Contemplating

Ethan had another stable day. No real progress forward, but stable. We are grateful. Ethan's chest tube output continued to pick up. He is at 440 mL right now with two hours to go for the day. That is 200 less than yesterday though! The surgeon talked to us tonight about the procedures. He wants Greg and I to sleep (and pray) on what we talked about and make a final decision tomorrow. Ethan has struggled with pleural space effusions since he was in utero. The feeling the surgeon is having is to do BOTH procedures: chemical pleuraldesis and a thoracic duct ligation on Sunday morning. Poor little guy! But we feel it is time. It is going to be hard for him to progress if we don't get this problem under control. We just hope his body and heart can handle another surgery.
Love and Thanks-
Greg and Heidi

NO NEW TUBES

Ethan had a steady night. The drainage from his tubes picked up
a little bit! That is great. That means the tubes are not clogged
and that his production is slowing down. It's been a rough 10 days
for Ethan, so no one is getting too excited yet. We are holding are
breath and hoping he doesn't start dumping fluid again. But
yesterday was the first day in 10 days that he didn't get WORSE!
Keep the prayers coming.

Much love-
Heidi

Holding Steady

Chest tube has only drained 30mL since 3pm. We are shocked and worried and hopeful all at the same time. The x-ray at 6pm showed some fluid build up on the left side, but nothing like we were expecting. Ethan had dumped over 600mL up until 3pm. Since the x-ray his vital signs are steady. So we go into the night praying his body is really slowing down production and he can tolerate these changes and hoping the fluid doesn't continue to build up and cause problems. I will post in the morning and let you know how the night went. I hope it doesn't involve new chest tubes!