Ethan still looks great and his heart is working well. There is much to be grateful for. However, I don't see our hospital stay ending any time soon. After putting in the chest tube and switching to the "special" formula his output from his chest tube has kept going UP! And yes, that is not typical. If it continues to go up through Sunday then the next plan is to stop feeding him. They will restart the feeds through IV lines. This is not what we want to happen but we will do whatever it takes to get that little man better.
The special formula is a low fat formula (because the fluid going into his pleural space around his lungs is fats that are absorbed into the lymph system). So Ethan has also lost weight since he started that formula and is almost back to his birth weight they told me this afternoon. That is a major concern and they are currently trying to increase his calorie intake without adding fats. With his next surgery set to take place in 2 months, he needs to be growing and getting stronger during this period. It is our prayer that he will be able to overcome this chylous effusion in a timely manner. Our older children are constantly asking when we will bring Ethan home and all be together again. I hope soon!
Much Love-Heidi
8 comments:
That does sound like a huge frustration. I have looked up Ethans condition and I must say that is a lot to take in. I thought Lily had problems...which in her own way she does, but poor Ethan, back down to his birth weight. I bet the doctors and of course you are wanting to bang your heads against the wall. Been there, done that...
You previous post made me laugh when you mentioned icu pychosis, because as a fellow heart mom I completely understand. You don't want to be anywhere else but there but at the same time it is nice to get outside of the hostpial walls. But as soon as you are, all you can think about is getting back up there. 1 month is hard, our longest stay was just over a month and a half. We are praying daily that he gets to come home soon for you guys.
Not sure if I have ever posted a comment before, but I came across your page from the Milnes and the Andersons. Bela and my daughter share the same birthday, and I had the privlage of meeting the Andersons durring Lily's 3rd OHS, and I had the honor of meeting Angel Jersey.
The PTCICU is our second home and our second family. Going home is so joyful, but we do miss them something awful. That is why we visit so frequently.
Sending our heart hugs and blessing
The McLaughlins
Jenna and Lilyana
So close to going home, I am so sorry for this persistent chylous effusion situation. No doubt, frustrating that it is not resolving by usual methods. We will absolutely keep praying for brilliant doctor's and the opportunity to bring him home soon.
I have been watching Ethan since his first surgery. That sounds kind of creepy. LOL.
Lily was born with a bunch of problems. She was oringally diagnosed with HLHS in the womb but it soon changed when she was born.
Lily has what is called Dextrocardia Situs Inveres, which means her heart is on the right side of her chest. Not only is it on the right but it is an EXACT mirror image of ours, so it is filpped over. The right chamber is the left chamber, and the left is the right. That is why I thought she had HLHS. She also has Aortic stenosis, but we just found out durring her 3rd OHS that the valve is completely defected and will never function properly. That will be what her 4th surgery is all about. They will take her pulmonary valve and replace the aortic valve with it. Then once the take that pulmonary off, they will replace it with a synthetic valve, which will have to be replaced every 3-5 years, due to growing and wear and tear on the valve. She will have them up until she is 20 and then we will put in an artifical valve which will be good for about 20 years.
She also have what is called, Left Ventricular Outflow tract obstruction, probably spelled that wrong,(Not one of my strong points) That is what caused us to almost lose her last april. She went into critical heart failure and if I would have been mindful to her and called the doctors when we did, she wouldnt have made it through the weekend.
She also has had a CoArc repair which is holding steady. She has DORV which is Double outlet right ventrical. Her pulmonary valve at one point was to small so they ballooned it and it turned out being fine.
She also has problems with her mitrial valve but as of late we have seemed to get it under control with medication.
Some days I wish she would have just had HLHS, but I know that would have brought its own set of problems. It would have been nice to know that we just had 3 surgeries instead of endless ammounts. I wonder how many her heart can take. I just pray medical technology advances quick enough so they dont have to open her chest everytime. They dont have to in the UK, the do valve replacements through caths...but it hasnt been FDA approved and brought to the US yet. Unfortunatly.
I think that is enough ramblings for the day. Give Ethan a kiss from us and let him know he has another family praying for him. The heavens are echoing with prayers for him.
Sending you are heart hugs again and Blessings.
Jenna and Lilyana
You are amazing, to look at what you have to be thankful for even when there are trials going on. I will continue to pray that Ethan will grow stronger to be prepared for the next surgery. He is a fighter, and I just know he will be okay.
Bummer news... the chylo is icky stuff. It kept us there for two weeks extra after Owen's Glenn. Just waiting for it to stop draining. Day after day, we'd check his drainage and PRAY that it would just STOP already
We're praying that Ethan is out of there soon and home with you. It's such a short time before surgery #2, but those days would be wonderful spent AT HOME instead of ICU.
I'm thrilled to hear his heart function is great!!! That is one thing we have never had going for us. Keep posting pictures ... he's such a doll!!
One little miracle at a time. We'll pray hard for your cute little buddy today! You look so pretty in your Suns pic's, the stress doesn't show on your face at all! You are such a tough family. Hang on friend! Big Hugs!
I'm so sorry to hear that Ethan is having so many setbacks. It's so hard being in the hospital. I'll pray that you can take Ethan home and be together as a family soon.
I made a link for your blog on mine. What do you think?
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