Just Some Pictures

Post Op Day #5

Ethan had a great day today! He has been interacting with us and talking a lot more as well as smiling and laughing at his favorite shows. It truly is a relief to see him coming back to life. His heart rate and respirations are also finally going down to a more normal range (his heart rate was in the 150's-160's and his respirations were in the 50-60's for the last 2 days). We went on some "long" walks and went for a few wagon rides. He had another messy diaper (yay poop!). His tummy is now soft and it doesn't seem to be causing him any discomfort. He also had a few visitors today and has started eating a little bit better. However he has not been drinking much the last couple of days and that needs to improve before they will let him come home.

I took a lot of cute pictures today but I left my camera at the hospital. Towards the end of the evening Ethan was getting grumpy and tired and so the pictures are the complete opposite from yesterday (grumpy turning to happy vs. happy turning to grumpy). Tim is going to spend the night with him tonight and I will go back in the morning. Tim's computer got a virus on it yesterday and so I haven't been able to make any posts from the hospital. I think he may have it fixed now, so I will post some pictures tomorrow.

I just wanted to say thanks again for all of your thoughts and prayers (and treats and gifts for Ethan). It means more than any of you may realize.

---Allison

Post Op Night #4

Tim spent the night with Ethan last night and the report I got from Tim when I called this morning was the Ethan has finally pooped (all over Tim in the cafeteria I might add)! I think he is finally feeling better and I wouldn't be surprised if we started hearing the "home" word in the next day or so. He is getting his pacer wires out today and so after that he will just have his IV and monitors to deal with. Tim said that he ate a few scrambled eggs and a little bit of french toast this morning. At this point, if he will keep eating we just need to work on getting him to take his oral meds. I am excited to go up and see my little man. Yay Ethan!!

---Allison

Post Op Day #4

As you can tell, our little man is just not feeling well. They stopped the morphine all together and wanted to start him on Motrin. I voiced my concerns that he probably wouldn't take that just like all of the other meds. They decided to try Toradol instead and it is proving to be better for him on the pain front. He seems to have better pain control and his blood pressure is starting to come down. He is really struggling with taking ANY of his meds orally. I am not sure what they are going to do when he will either spit out or throw up his meds.

Ethan's x-ray this morning looked good so they felt that they could remove all 3 chest tubes. This was really painful, but as always he handled it like a trooper. He just cried out the word "Ow!" with each tube removal but didn't cry once. Since his tubes were removed, they really wanted us to get him up and walking. You could just see the pain in his face when he took his first few steps. He was really weak and wobbly. We've gotten him up about 4 times tonight to walk and once we took him to the playroom. As you can see from the pictures, he wasn't too thrilled.

The best news of the night is he had his first smile in 4 days!!! Tim had to act like a complete idiot to make it happen (but that's nothing new hee, hee). It was a fleeting smile and was followed a scowl but it was a smile nonetheless. He must be feeling at least a little bit better to get a smile, right? I hope we are turning a corner.

---Allison

Night #3 Update

So the morning sun is beginning to shine through Ethan's window and not much has changed since last night. He is still in a lot of pain but is refusing his Lortab. They've hesitantly been giving him Morphine since they don't want to slow down his bowels any more than they already are. They tried giving him an Enema last night which produced some small results but overall didn't help a whole lot. His belly is still very distended and firm. The good news is that his chest x-ray looked good today, so they will remove his chest tubes and hopefully get him walking today which should help with his belly issues. Please keep our little guy in your prayers. He could sure use them.

---Allison

Post Op day #3

Ethan is miserable. He still hasn't "pooped" and is really struggling with pain. He was moved out of the PICU today to the surgical unit which means that overall he is stable but something needs to happen to make him feel better. I actually think he looks worse today than he did yesterday. He is just really having a hard time with pain control. His heart rate and respirations are increasing and he is breathing very shallow. He looks really flushed and I am hoping that he is not getting a fever. He still has his chest tubes in and got a new IV today. We'll see what the night brings (hopefully a HUGE messy diaper) and some better pain control. Pray for poop!

---Allison

PICU Night #2

Ethan is looking SO much better. He had a sponge bath last night and it seemed to help him relax a little bit. However, he is fighting taking the Lortab. It tastes yucky and he doesn't understand that it will help him. They gave him Morphine a couple of times and that seemed to help some, but it just doesn't last as long. He gets painful he just whimpers and moans. His body gets very tense and rigid and then he trembles. He gives you the saddest look and says"Ow, ow". Oh how I wish I could make it all better.

He is also struggling with a very firm and distended belly. He hasn't "pooped" since Monday which is also causing him a lot of pain and discomfort. They have tried a couple of things (juice, suppository, Miralax) but it's not working. He is actually to the point where he isn't breathing the way he should be. He also threw up all over himself this morning because his tummy is just not moving much. I've been told that this is all common after the Fontan because the blood flow to his organs (including his stomach and intestines) is all different now. All in all, he is definitely showing improvement but he has a long way to go.

---Allison

A Better Day For Ethan

I talked to Tim not too long ago and he said that Ethan is having a better day. They've removed his Arterial line, his Jugular central line, and his Atrial lines today. He still has 2 IV's (one in his neck and one in his foot), his pacing wires, chest tubes, and urine catheter. Tim said that he is still groggy but is not as combative as last night.

I will again take the night shift and will be trading Tim places shortly. I wasn't able to get a good sleep today because the refinery (just under 1/2 mile away from our house) had an explosion and made me literally jump out of bed. It happened just after 9:00 this morning. There are no words to describe how loud it was. It was NOT a nice way to wake up! I was literally trembling. The house looked like it sucked in and then bowed out. The power went off. The house and windows shook. It knocked a picture off of the wall in our hallway. Needless to say, it was scary. There were houses down our street that had the windows blown out and at least one home has been condemned. As far as I can tell there was no damage to our home. I am just glad that I was the only one home. From what I've read on the Internet the blast was heard MILES away. Anyway, I am OK but I didn't get much sleep. You can read about it on kls.com if you want.

Here's to hoping that there are no more explosions and that Ethan will have a good night tonight (and that I will be able to catch up on some sleep, tomorrow).

---Allison

A Rough Night

I just got home from spending the night shift with Ethan. He had a rough night to say the least. His lungs are still "wet" and so they are giving him more Lasix to decrease his chest tube drainage. All of his "numbers" are looking good, but they had a hard time keeping him comfortable. He kept wanting to get up or roll over. He wanted juice and they wouldn't let him have any. He was miserable. They tried Morphine and Ativan. They increase his sedative a couple of times. They switched his crib to a big bed so that I could lay next to him to try and comfort him and that didn't even seem to help too much. They also tried switching rooms to a quieter one, but to no avail. He was up pulling at his lines and thrashing around about every 5 minutes throughout the night. He finally fell asleep around 0445 this morning and slept comfortably up until I had to leave at 0700. Tim is on his way up to be with him now while I try and get some sleep. Hopefully he has a better day today.

---Allison

Pre & Post Op

Ethan and I getting some camera time in Pre-op.

Ethan playing the Game Cube in Pre-op.

Ethan LOVES the bubbles that they have in the exam rooms. It's the first thing he asks for when he gets there.

Dr. Hannon (the anesthesiologist) listening to Ethan prior to taking him to the OR.

Ethan going on his wagon ride to the OR with Dr. Hannon.

Ethan in the PICU.

Tim loving his little guy in the PICU.

So it's been a very long day. Tim is at the hospital with Ethan and I left to try and get a couple of hours of sleep before I go back to stay with him all night.

As far as Ethan's condition, although they have him on a medication that sedates him (as well as morphine for the pain, and a bunch of others, of course) he keeps waking up and getting combative and agitated. He tries to pull at his lines and keeps trying to roll over. He is also running a fever and having high blood pressures which they are currently trying to get under control. His breathing is also very labored and they just gave him some steroids to try and help out his airway constriction.

He is such a fighter and I know that we will get through this. I just hope that he doesn't tear out all of his lines in the meantime.

---Allison

Surgery Update #5

He is out of surgery!!! We've spoken with Dr. Kaza and he said that so far everything is looking good. He didn't run into anything unexpected (they anticipate a lot of scar tissue to go through and such). He is already off of the ventilator (breathing tube) and we expect he will stay that way. We will be able to go to the PICU in about 20 minutes to go and see him. Other than the surgery the next 24 hours are the most critical and he will be watched very closely.

It is such a surreal feeling to have the surgery over. I've been looking into this day for so long now. I realize that there is an often bumpy road of recovery. But, to think that this morning my focus was on coming to the hospital and this afternoon my focus is on recovering and leaving the hospital. It is all too much at times.

Words can't express enough how appreciative Tim and I are to all of you who have had our family in your thoughts and prayers. From the bottom of my heart, "Thank you".

---Allison

Surgery Update #4

We just got a call that Ethan is off the heart/lung bypass machine and now they are working to disconnect it. His echo looked good and so after he is disconnected from the bypass machine they will work on getting him closed back up. He is still doing well and we should be able to talk to Dr. Kaza in about an hour. We will update after speaking with him.

*Just to answer your question, Jenn. The heart/lung bypass machine basically makes the blood bypass his heart but keeps it flowing to the rest of his body. If they have to repair the actual heart (like as in his 1st surgery), they will stop his heart so that it is not moving while they are trying to work on it. However, if they are not working directly on the heart, they will let it keep beating since there are less complications than if they stop it all together. They still don't want it beating like normal (because according to our surgeon it can "suck air into it") so they make it "fibrillate" instead of beat. This basically means that it is moving but not in a synchronized manner (but at least it's still moving). After the repair is over, they make it beat in a normal manner again.

---Allison

Surgery Update #3

Ethan is currently on the heart/lung bypass and they are working on the actual repair to his heart vessels. He is still doing well as are Tim and I. We feel of your love and support and appreciate all of you. I will update when they come and talk to us again which will be roughly in another hour.

---Allison

Surgery Update #2

We just got another update from Bonnie (the Nurse Practitioner) and I guess I made a mistake on my last post which was that he did have all of his lines in but he was not on the heart/lung bypass machine yet. She said that he is stable and doing well and that the surgeons "are almost through his chest wall" which is when they will have access to his heart. After that is complete, they will then hook him up to the heart/lung machine. She said that we will have another update in about an hour.

---Allison

Surgery Update #1

Ethan was kissed goodbye and went on a wagon ride with Dr. Hannon (the Anesthesiologist) around 7:45 this morning. We just got a call that all of his lines are in, he is hooked up to the heart/lung bypass machine, and that they have made the first incision.

We spoke with Dr. Kaza (the surgeon) this morning and we really liked him. We feel like Ethan is in good hands and that he will be OK. He told us that he won't have to stop Ethan's heart this time which is comforting. We will keep things updated as the morning progresses. Thank you for all of your support.

---Allison

Pre Op Stuff Today

This picture has nothing to do with pre-op today but I thought it was too cute no to share. I found Ethan putting these on the morning after Halloween. He's always trying to be like his older brothers.

The last few pictures were from this morning (although they are out of order). The first one is of him getting his x-ray. The 2ND one is him wearing his sunglasses (his prize from the lab where he got his blood work done). And the last one is him in his "wagon". (He rode this police car to and from each department.)

Overall, he did really well for all of the pre-op work ups. The only snag we ran into was that his first blood sample clotted and he didn't want to go back to the lab. He put his feet firmly on the floor so that I couldn't push his car back into the lab waiting area. He ended up getting poked 3 times and was very upset about it. We made amends with an Elmo balloon and so now we're friends again.

As far as the rest of us, we are all doing relatively well. I did get that sinking feeling in my stomach on the ride to the hospital this morning and had to choke back the tears. But once we got there, my mind turned to getting business done and then getting out of there.

The general time frame tomorrow is as follows. We have to be at PCMC at 6:00 in the morning. We will meet with his surgeon, Dr. Kaza, and tie up any loose ends. He will go into the OR at 7:30. We're expecting the surgery to take around 5 hours. They will update us hourly and we will be posting along the way to keep you all informed. He will be in the PICU after his surgery where we will be able to go and see him.

I wish that with each surgery things would get easier. However, this one scares me the most. I fully expect things to go well, but that doesn't take away the pain and fears that you have when you are going through it.

We've already received so many well wishes and offers for help. I just want you all to know how much I appreciate all of your kind words, prayers, and support. I will keep you all updated and post pictures when I can.

---Allison