Quick Update

The ENT doc suprised us and came by last night. Unfortunately the trachea is in worse shape than we hoped. There is still a lot of swelling, so the docs put him on decadron (steroid) to bring down the inflammation. Then they will re-assess in a few days. But it appears that both vocal chords are paralyzed in a semi closed position. Thus his airway is too narrow for him to adaquetely breathe on his own. They keep telling us this is not a permanent problem, but it may take a few months to resolve. If it does not get better when the swelling goes down then Ethan may have to get a tracheostomy. They should be able to remove it by the second surgery though. It was not the news we wanted to hear, but we are grateful there are always 'options' whenever we have a problem. Modern medicine is amazing and our hearts are full of gratitude for how well Ethan is doing. His heart is functioning awsome and he melts are hearts everytime he grabs are fingers and looks us in the eyes. I even held him for over an hour today and he loved it (or at least he acted happy instead of crying non-stop). However he was back to Mr. Irritable by the afternoon :) Pray for the airway!
Love and thanks-
Heidi
PS: Thanks to the cooks, play-date moms, and cleaning crew members who are getting our family through this time! My heart is more grateful than you can imagine.

Frustrated

It has been a rough weekend. Nothing we can't overcome, but some setbacks to say the least. I have mentioned in previous posts that time would tell the side effects from the vascular ring repair (Ethan's whole aorta was wrapped around his esophogus). Well we are starting to find out. Ethan was keeping his oxygen saturations up while they were weaning down his oxygen from the nasal cannula, however he was working harder and harder everytime they lowered it, had increased stridor, and has been very irritable. Finally they ran some blood work and realized he was not doing as well as they thought at exchanging air so they put him on CPAP. That is one step away from being on the ventilator again. It has helped.
An ENT doc came down today to evaluate his trachea and vocal chords. He still has a lot of swelling pushing on his esophogus and trachea. This made it hard to see the chords, but it appears that both of his chords may be partially paralyzed. They could be this way for a few weeks or a few months. The problem is they are obstructing Ethan's airway making it hard for the air to pass, thus he was having to work so hard to breath. The docs are starting additional steroids to get the swelling down and will re-evaluate in a few days. But it looks like are stay is going to be even longer and we may have to take some additional measures to help him with breathing. If the chords are paralyzed they also will not let him start trying to use a bottle. We will have to go home on NG tube feeds! Fun times :)
The other bummer is that Ethan thinks being held is overated! He is so irritable right now from EVERYTHING he has been through that he does better if you just leave him alone. It is hard to see your little guy struggling and not be able to pick him up and comfort him. But he sure is beautiful to look at!
Loves to all-
Heidi

Holding Him Again.

Day by day more lines are being removed from Ethan. The withdrawls are slowly getting under control and the swelling is almost gone. Today the other chest tube, an IV line to his heart, and an arterial line were removed from his little body. Although there are a lot of lines to go, we could finally HOLD him again! What a special time it was. What a gift Ethan is in our life. Everyday is a miracle. Greg brought down the kids today and they got to see and hold Ethan (briefly). It was the first time we were all together as a family since before Surgery.

We have met several other families on the heart unit and have come to love the staff there. It is an amazing place! This is a special experience we are meant to have, and I hope and pray we learn everything the Lord wants us to learn. We also continue to be in awe at the service and prayers that are being offered in our behalf. Thank you.

Love-

Greg and Heidi

Off the Ventilator!

Ethan is off the ventilator! We are so grateful for the progress he has had over the past 24 hours. It started with finally being stable and then the doctors decided it was finally time to wean him off the vent! He has been off of the ventilator for almost 4 hours. I have loved every minute of looking at his beautiful face. He has nasal prongs providing high flow oxygen right now. But that is so much better than the ventilator. They also let us wrap him up in a blanket, his favorite.

Unfortunatley I still cannot hold him due to the heart meds he is on and one of his IV lines still goes directly into his heart. Those need to be gone before Greg or I can hold him. He still has one chest tube in, but they took the left one out today. It's a good day!

The only negative news is Ethan is pretty uncomfortable. In order to wean him off the ventilator they had to wean him off sedation and pain meds to ensure he would not be too groggy to remember to breath. We also cannot hear him cry yet. The vocal chords are irritated from the breathing tube that was in. If it doesn't improve over the next few days we will know there is also temporary paralysis from the surgery.I cannont say thank you enough for your faith, love, and prayers!

Love-

Greg and Heidi

Slow and Steady

We are learning we are on the Lord's time and Ethan's time. After a few setbacks, today has been a quiet day with some baby steps in the right direction. We will take it! They had to put him back on one heart med that he had been off for a few days. But it is the smallest dose possible and it has made a huge difference. His blood pressure has been pretty stable since last night. He has had a few concerning moments which he resolved himself. The surgeon explained that a lot of babies who receive the "Sano shunt" on their heart struggle with fluid balance and blood pressure. That was reassuring to hear. I was starting to think it was an abnormal struggle we were having.

They have started the lasix again. This helps pull the extra fluid and swelling off his body. He needed lots of extra blood and fluid over the weekend. And to keep his pressures up they had to stop the lasix. So he now looks like the PILLSBURY DOUGH BOY! We thought we would snap a picture of him looking all chubby and compare it to what he looks like when his swelling is gone!

The other good news is they have lowered a lot of the ventilator settings. He is doing most of the breathing on his own. His chest is also clearing up. Another step in the right direction. He is also looking and moving around a little more. They had to keep him very sedated during the last couple of days. We pray for a continuation in the right direction. Patience has never been my strongest virtue! The Lord knows what I need to learn.

Much love and gratitude-

Heidi

A Good Night

Just a quick post. I have had some calls of concern. He had a much better night. His saturations and blood pressure were much more stable. He still has had a few dips. They are probably going do the other chest tube soon. I will update tonight. Thanks to all who are concerned and have reached out to us. We feel so blessed as a family for the love and support we receive!

On another note, it is Gage's birthday! Just wanted to note how much I love this kiddo. He is so driven and full of spunk. Gage wants to accomplish anything and everything. Greg and I have a hard time keeping up with him and all his ambition. I love you Gage!

Love-
Heidi

3 Steps Forward, 1 Step Back

The nurses told us the day of surgery that the unwritten rule on the floor is 3 steps forward and one step back. We had our step back! And even though they tell you to plan on it, the news things aren't going in the right direction still makes your heart jump into your throat.Ethan has been unable to keep his oxygenation where he needs it to be since 5am. After trying every measure they could think of (that was not invasive) they decided they needed to place chest tubes to drain his pleural effusions (fluid around his lungs).
Upon placing the first chest tube they had a huge amount of blood come out of it. So much that the doctor called in for back-up. They had a whole team of doctors, nurses, and techs in their running test to make sure they didn't puncture something with the chest tube. They had to transfuse him with blood, plasma, and other fluids. Part of the need for so much fluid is that they have been trying to pull off alot of swelling fluid since surgery and he was actually dehydrated. After 2 hours the final conclusion was the tube was in the right place and there was no active bleeding. He just had that much build up around his lung. It was so stressful they have decided to wait until tomorrow morning to place the chest tube on the other side. Ethan had enough for one day.

I can't say enough about how much love I have for this child. He is an "old soul" if you will. Or shall I say a special spirit. He had to be sedated most of today while they worked on him. . . So I haven't been able to see those beautiful eyes. At least his oxygenation has improved. Hopefully the other chest tube will help even more. Keep the prayers coming. I feel the love of my savior around me and Ethan whenever things are stressful. It is definately a tender mercy that He is letting me know He is there.
Goodnight-
Heidi