Ethan part 2

We always knew Ethan would need another surgery between the ages of 3-5. In October of 2017 due to lower oxygen levels the doctors thought Ethan would be the perfect candidate for the fontan.  Due to an over abundance of RSV and the flu patients that year beds were limited so surgery was pushed back. December 5th for the heart cath and the 6th for the fontan. My in-laws, father and my grandparents came with us the day of surgery . The cath went fine and they determined he was ready for what we expected to be his last surgery. The morning of his procedure he developed a rash, but no one was too concerned so everything went on as planned. After about eight hours in surgery we finally got to see our sweet boy! This was a familiar scene for us, but never an easy one. We thought he would recover and we would be home in another week or two. However the first time they tried to extubate (take out his breathing tube) him it only lasted a few hours.

Dec. 11, 2017

I held him for a while and then we were rushed out so they could put the breathing tube back in. A day or so later he was extubated again and we were moved to another ICU room. About a day later he was once again intubated. At this time he started to experience some bleeding out of his chest tubes and incision site. They decided to go in open his chest and locate the bleeding. They left his chest open so they could go back in again a day later. By this time we realized he wasn’t doing well. He developed pneumonia so infectious disease came in. They determined he also had MRSA. It was like everything was going wrong and he just kept getting sicker and sicker. We prayed and cried continuously. Thankfully my in-laws and husband were still with me. On the morning of December 21, 2017 we walked into his room after trying to get some sleep and I immediately told Jeremy that Ethan did not look well. About that time his surgeon walked up to the door and began to talk about what the next steps would be when I heard a gurgling noise. I looked down and saw blood pouring out of his chest tubes the monitor started going crazy and everyone ran in and ran us out. Time stood still. Ethan’s surgeon was already prepared for another surgery so he sent the other doctor down to stop the bleeding and put him on bypass with instructions to wait until he got there. After about 8 long, painful and terrifying hours in the surgery waiting area, the doctor came out with what looked like tears in his eye. My heart dropped. He sat down and said “He’s alive, but he’s very sick. I had to take down his Glenn and fontan and he is on ECMO ( the biggest form of life support.)” He then gave him about a 50% chance of survival. I later found out he really only thought he had a 20% , but kept that to himself. I have never spent so many days praying on my knees bargaining and begging with God.

Facebook post- Dec. 25, 2017
  Ethan is heavily sedated today because of his continued bleeding issues while on ECMO so he didn’t get to see the presents Santa left him yet. We took pictures for him that he can see when he wakes up. His lungs still need time to heal and he has mrsa now so he is on antibiotics for that. That means we will be here for 6 weeks or more. We have been shown so much kindness while being here during Christmas! If you didn’t know the real meaning before then you would leave with the clearest picture of it ever! I can’t say thank you enough to everyone that has donated, volunteered, sent or given us things, offered help, prayed and those that take care of him day in and day out. Merry Christmas everyone and thank you for the continued prayers!

Facebook Post- Dec. 31, 2017
I haven’t updated much because things are just moving slowly. He is still on VV ECMO and an oscillator for his lungs. The bleeding is under control but he has to be on heparin so that is a daily balancing act. He is on several antibiotics for different infections but we are hoping to get some results back today that could get him off of some of the antibiotics. When he wakes up to be turned he is extremely uncomfortable/in pain so they are keeping him heavily sedated. I miss seeing his pretty eyes and that smile but it breaks my heart to see him hurting. He still has his feist because I asked him if he wanted me to leave him alone the other day and he nodded yes! 😂 Plus he still likes to put his hand in our sleeves. It’s very hard to hug him like we are used to so we take what we can get. We are currently continuing to take this one day at a time as this is going to be a long journey. Thank you to everyone that is helped us in anyway and for all the prayers! It just really means more than I can say.

January 18, 2017 as we are giving him a bath and his nurses went to turn him and his cannula came out of his artery. It was terrifying to see the outcome of a bleeding artery and hear the monitors going crazy. They rushes him into emergency surgery around 10 pm to replace it. I will never be able to erase that memory from my mind. We anxiously awaited until 3am to find out any info.

 Facebook post– Jan. 28, 2018 Ethan is making really good progress. They did an echo on Friday and found a clot in his shunt leading to the pulmonary artery but it’s small enough that they are treating it with heparin. As of yesterday they were talking about extubating Monday or Tuesday but we got a call in our sleep room around 3:30 this morning and he had a pulmonary episode where his oxygen sats dropped into the 40’s. Luckily it was only for a few seconds. The concern is that he dropped to the 60’s and had a hard time recovering from that. He may just be telling us he isn’t ready to be off the vent yet. That’s ok. I don’t want to rush anything and have setbacks. Today he is in a great mood and withdrawal symptoms seem to have subsided so he is in his chair coloring and playing with slime while he watches frankenweenie. Thanks for the continued prayers. ❤️

Facebook post- Jan. 30, 2018
So, we did this today!!! I got to hold him for about 30 minutes thanks to his awesome nurses! He slept the whole time until he was ready to get back in bed and my feet were asleep. It was good for my soul and it seemed good for his too. It’s been a long two months since I got to do this ❤️❤️ *please excuse how exhausted I look
Facebook post-
Ethan’s x-ray looked a little better this morning but his lungs are still very sick. They are gonna make some decisions in the next 24 hours about his ECMO. They will test and see how he does off of it and if that doesn’t go as well as they want then he may have the cannulas switched to other parts of his body so they can close his chest. This will reduce the risk of further infection. He had a rigid bronch yesterday and they got some secretions out but not as much as they’d have liked. It’s some super thick, stubborn mucus. They try to pull it out and it snaps right back basically. Heart function still good, bleeding still under control. He has some delirium but I did get a couple of smiles today and he looked at the pages while I was reading him some books. That’s all for now. Thank you for all the prayers, support and gifts. We have such an amazing family and group of people behind us and him. Love you all.

We have never been so scared in our lives, but we kept the faith and it worked. It took time, but God gave us a miracle. Ethan spent almost a month on ECMO. He developed clots and was on a pacemaker and yet still he fought. He went without food or drink for three months and we didn’t hear his voice for that long as well. It was so hard to watch him want for little things like water, but we had to say no. He got angry, but he still fought He fought harder than any adult I’ve ever seen. All of those CHD kids and babies do. They are all fighters.

Facebook post – Feb. 1, 2018
Playing the guitar with music therapy today. Everyday he gets a little better!

Facebook post– Feb. 6, 2018 Making some progress! Hes been extubated since this morning and so far, so good. Thank the Lord we made it to this point and we are praying we stay like this. We can’t wait to hear his sweet voice again when his throat feels better. ❤️❤️

Feb. 14, 2018
Feb. 21, 2018
March 2, 2018
We got to sit on the couch together today!

Facebook post– March 6, 2018 Ethan finally got the okay to ride in a wagon around the unit today!!! We were all so excited for him and he enjoyed it, even if all he talked about was water! He pointed at every cup and sink he saw 😂. When he gets off the vapotherm and bipap he is going to drink water until he pops! He is really acting like himself again and talking a lot. As always, thank you for your continued prayers. God has got this boy!

March 18, 2018

Facebook post– March 24, 2018 Ethan is back to his old talkative, happy, spunky and sassy self again! I couldn’t be happier. I feel like the darkness is gone and we can finally see the light at the end of this long tunnel. I don’t know what the future holds for his heart, but right now that doesn’t matter. I am just thankful to God, Dr. Mettler and all of these people at Vanderbilt who have taken care of him and gotten him to this point. Every time I think about it I want to cry, but it’s tears of joy!!! We still have to see if he will need a pacemaker, wait for the chest tube sites to heal more, get him off some of these meds and off the nasal cannula and figure out the plan for physical therapy after this. That list is much shorter than it was even a week ago! Thanks for all of the continued prayers for our precious boy. ❤️

Facebook post- April 1, 2018 We had a wonderful Easter here at the hospital! It is very bittersweet that we are leaving this week and going to CHOA. That may sound crazy, but this has been my home for 4 months and I love these people and what they have done for Ethan! They hid Easter eggs for him today (since all the other kiddos on the unit right now are babies) and our nurse Matt dressed up like the Easter Bunny to deliver him his basket. Pop and mamaw and papaw were here too. We are blessed. In SO MANY ways!!!!!!

He had to learn to eat and walk again. After four long months we went to Atlanta for two weeks of speech, physical and occupational therapy. We made friends with parents, doctors, nurses and so many amazing people. Sadly we also watched some of those precious ones lose their fight. It was life changing for us all. I don’t know what the future holds for Ethan. His doctors aren’t even sure yet, but I do know that God has been so good to us. I continue to thank him every day especially when I look at my strong boy.

April 5, 2018
April 15, 2018
April 17, 2018
We are home!!!!!
June 3, 2018
Celebrating Christmas in June since he missed it before.
A little over a year later

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