The next step

The questions about surgery are as follows:

Where: Texas Children's
Who: Dr. Fraser
When: will be decided soon
What: most likely a Glenn procedure and a correction of the pulmonary veins
How: that's up to Heavenly Father and the surgeon!

All kidding aside, during rounds this morning they will be setting up a time to come in a do Ethan's blood work for surgery as well as scheduling his cath to determine his anatomy anomalies and his pressures within his heart. Surgery date to come soon!

Basically, his pulmonary veins form a sort of pouch then one common vein stems off and goes around his pulmonary artery that leads to his right lung, then it goes back down and into his heart. They are worried about restrictions within these vessels and it would be better if they just hooked up to the heart like normal, so that's what they are going to try to do. His anatomy is too complex to be able to do a full repair unless they see something different with the cath...so we will be looking at a Glenn. Basically, they take his superior vena cava and detach it from the heart and connect it to the pulmonary vein so that he gets straight blue blood to his lungs instead of a blue/red mix. I don't know if they have decided to disconnect his pulmonary vein from his heart or leave it as it has got a lot of blockages and stuff that could get nasty. I have a picture that Dr. Altman drew to explain his anatomy to me and as soon as I can get it scanned in I will.

More updates soon...we're coming down to it now...

Preliminary Results

The cardiology team met with me briefly today and although all of the results of the MRI are not back yet...meaning that they haven't gone over them yet...the preliminary findings are that the pulmonary vein conflusion enters the heart in the center of the heart after being somewhat restricted by the bronchus. They were also able to see the positioning of the pulmonary artery better and it looks like the artery is overylying the VSD and partly coming out of the left ventricle. Which means that we don't have DORV, we have complete transposition. This may or may not make his heart easier to repair. We will have to wait for the surgical conference on Monday. Dr. Altman is the floor cardiologist this weekend of which I am grateful. I feel so comfortable with her...we've worked with her since February and I can read her doctor speak better than anyone else's. I don't know what is going to happen next week. I am trying to prepare myself for anything.

We made it!

MRI is over and Ethan is back in his room with us resting comfortably. He was agitated when he came out of anesthesia but quickly went back to sleep...we are looking forward to a happier baby when he wakes up...although he will definitely be hungry! They got between 800 and 1000 pictures and are processing them now...initially it looks as if his pulmonary vein running between his bronchus (spelling...sorry) and another harder structure that I can't begin to remember the name of and in some positions the vein is being compressed and causing desaturations. We will know more tomorrow after the cardiology team looks at the images. We don't know if they will wan to do a surgery before he goes home or not...hopefully that question will be answered tomorrow...anyways...we are back in waiting game mode and are just grateful that Ethan's first experience of "being under" went well. Until tomorrow...

MRI

Just sitting here waiting for Ethan's MRI to be finished. I am updating the blog instead of sitting here twitching! It's not working really well, but at least I feel productive. I was able to carry Ethan downstairs and then be with him holding his little hand until the happy gas took over. He is wrapped in heated blankets so I'm left with a laptop computer and his blankie in the waiting room. I never in a million years dreamed that I would be where I am right now. I feel helpless because I am not in control of what is going on. This is the biggest trial of faith that I have ever been through because I not only have to rely on my faith in Heavenly Father but I also have to have faith that the doctors are doing their very best and that everything is working out for the good of everyone involved. Elise wa sso sweet last night. She has never once complained because I have been out of town. She and Craig have gone to school and Nolan has gone to stay with my mom or Jennifer during the day and not once have any of them complained. They know that I have to be with Ethan...and they know that they will see me on the weekends. But last night Elise asked if I would be home by Saturday and I honestly answered that I didn't know. Then she asked if I would be home by December because they are having a mommy/daughter activity with her group and she wanted me to be there. She was so innocent and sincere. She really wants me to be there and was asking so she could prepare herself if I couldn't. I am so looking forward to spending time with her and her brothers. I am in my own world here at the hospital and have to keep reminding myself that they are still doing their normal things...

baby pincushion

Ethan is a little baby pincushion this morning after yesterday. They have tried to start an IV 10 times since yesterday afternoon. They even had the NICU team come up and try. His veins are not cooperating. So, he's on clear liquids until noon and then he will be ready to go downstairs to prep for his MRI. They are going to give him "knock out gas" to get him under so that they can start the IV and then switch him to IV anasthesia. I'll continue the updates throughout the day. I'm really nervous but ready to have this over so that we will know what the next step in Ethan's journey is.

Back at Texas Children's

We are now admitted to Texas Children's for the fourth time in Ethan's not quite eleven weeks. He is having a bit of a fussy day. He just wants to be held and look around. He is getting used to being here again and is playing now. Richard was able to borrow a laptop for me to take to the hospital and so I am able to update blog and email more regularly. Ethan is on the MRI schedule for Thursday afternoon and will be under general anesthisia (I know I didn't spell that right) for the procedure. Richard will be coming down tomorrow evening to help me through the procedure. I am more calm about this than I have been for the past few days. I know that Ethan will be okay through this. I'm just a helicopter when it comes to him. I sound like a broken record bt thank you to everyone who has continued to keep my family in your prayers. They are felt daily.

Ears, Nose and Throat Doc

So we went and saw Dr. Duncan yesterday and he wanted to do two procedures to look at Ethan's airway. We did one only because the second one is done at the hospital under anesthesia so that we can get a look at what is going on beyond his vocal chords. The upper airway was checked by putting a camera down Ethan's nose. His upper airway is fine. On October 6th we will check his lower airway at Texas Children's. So...just to recap...we will be admitted for his crazy off the wall sats on Tuesday, MRI Thursday, Cardiologists and surgery team will review his case in the conference room Monday and he will also have the lower half of his airway checked on that day. October 7th is Nolan's speech and hearing evaluation so I figure I'm going to live at Texas Children's for the next few weeks best case scenario. Today Ethan's oxygen saturations have been in the upper 70's and he has rested comfortably. He got way too much stimusation yesterday and has had a full day of recovery. We're planning on another one tomorrow.