Going Home Tomorrow!

We have been told that we will be going home tomorrow! Is God amazing or what? Just blows us away!

It is nice being on the fourth floor as we have a few more conveniences. We had a pretty good night last night. Ethan slept on Brice's lap the whole night, so he was pretty comfy, but daddy didn't sleep much! The move up here was hard on Ethan and I think he was just scared and needed to be with his daddy. He has become a "daddy's boy" this week and it so sweet to see.

Ethan is absolutely terrified of nurses now and gets so upset whenever they walk in the room. They haven't gotten a good BP reading since we moved up here because he gets so upset. I think they just might lay off this since they did get a good reading shortly after we moved up here last night.

His last IV was removed from his foot this morning - he started walking around pretty much right after that. His drainage tube was also removed and he was taken off all monitors. So, he is cordless and tubeless! YEAH!

We played in the playroom this morning and he loved that! He looks like our normal little boy.

He had two chest x-rays this morning - one before the drainage tube was removed and one after and both look good. He had labs drawn this morning and his sodium is up to 139 - they want it to be between 135 and 145, so this is no longer a concern! Also, his appetite is coming back slowly. He had a chicken nugget, carrots and pears for lunch.

My parents brought Abigail and Isaac up to see him early this afternoon and it was good for all the kids to be together. It was also eye opening for Brice and I in that we can see that it will be such a challenge to keep Ethan from over doing it when he is at home. He is ready to play, but his body won't be completely healed for awhile and so he needs to be careful. Hard for a toddler to understand that!

Brice and I are feeling the exhaustion catching up to us and because of that, our patience is low and frustration level is high. Please pray for us as we transition to be home with a recovering heart patient and two other kids who want to keep going full speed ahead.

"Thanks be to God for his indescribable gift." II Corinthians 9:15

Fourth Floor!

We moved to the fourth floor this evening!

Waiting

It is around 5pm and we are waiting to be moved to the fourth floor. We have been told that it will be today and we have heard that it may not even be until tomorrow as they are waiting for an open bed for Ethan. We are hoping for today still, but don't have our hopes up too high as it is already evening.

Ethan is doing well. He doesn't like it when nurses or doctors come in now. He clings to us and tries to get away from whoever needs to listen to his listen to his heart, take his BP, etc.

After we move to the fourth floor, the nurse/doctor will be keeping an eye on the drainage from his chest tube. Since he has been more awake and moving around more, he has been draining a little more blood, but this will taper off in a couple of days. They will also be watching his food intake and BP. Hope we can keep moving right along with all these. They may check his sodium at least one more time, just to make sure it is still OK. Thanks so much to everyone who prayed specifically for this! Your prayers are being answered!

He is talking, but still hoarse. His crying is definitely a lot more quiet with being hoarse. It will just take time for his vocal chords to heal. We pray they heal completely.

He had a couple of short naps today. Would appreciate prayers that Ethan could get a good night sleep.

Thanks to everyone for their calls, emails, meals, prayers, encouragement. We feel so loved and taken care of. Abigail and Isaac are doing great at home with Grandpa and Grandma Busenitz. Grandpa and Grandma Bohrer have been helping out at the house too.

Here are some pics of Ethan taking a short nap on daddy's lap and having a little play time with Grandpa Busenitz.

Definitely a better night

Each of us got a lot more sleep last night! Ethan's night nurse encouraged Brice and I to leave and go get some sleep with a promise to call us if Ethan got too upset. We took her up on the offer since we had barely slept in the last 36 hours. We slept in the PICU waiting room and slept about as good as you can with strangers sleeping around you, people talking, doors closing, people walking around. It is definitely an experience and one that we never wanted to repeat. (They don't have beds for parents in the PICU rooms). When we walked back into Ethan's room this morning, he was sitting up in bed with a sippy cup, looking more like himself.

Ethan's surgeon came by this moring and said that his sodium levels are great and that he should be able to move to the 4th floor today. So, one more big step toward getting out of here. Thank you for specifically praying for this! He is currently getting potassium and a few other nutrients through an IV to bring those levels up. But, as he starts to eat more, that will correct itself quickly.

Right now, he is hanging out in his bed, eating Teddy Grahams, drinking apple juice and watching ESPN with daddy. Not too bad, huh?

We are definitely encouraged by his progress. Thanks so much for being faithful to check in on us and to pray for us.

Overall, a good day

Ethan was much more comfortable today, thankfully. He was able to sleep a lot. Later this afternoon, he was very alert and awake and acting a little more like himself as his temper came through a few times. He was talking a little and smiled just once. Just a little bit ago, he signed "please" and turned and pointed to the door. If that just doesn't make your heart break! He wants to leave.

His labs at 4pm showed that his sodium level was up to 129, which is good. They just drew more labs (8:30pm), so hopefully they will be up even more.

We are hoping for a better night tonight. Thanks for all your prayers and encouragement. God is bringing us through hour by hour.

P.S. There were only 3 heart surgeries today because of cancellations and not enough beds since the PICU is so full. We are so thankful we live near such a great hospital who can help Ethan and other kids with CHDs.

Sodium Levels Up!

Praise God that Ethan's sodium level went from 124 to 127. They will draw labs again at 4pm and are hoping they will be around 132. Please pray for 132!

Ethan is still resting comfortably. He has fewer tubes and that just helps his comfort level so much. The medical team seems to have found a good balance of pain meds for the moment, which is wonderful. This really helps Brice and I too!

He is so, so sleepy from the drugs, but at least he is able to rest. When he opens his eyes, he still doesn't really "see" us. Just looks really dazed.

There were 5 heart surgeries yesterday and 6 more today, so lots of "heart" kids around here!

Extremely Rough Night

We don't feel like we were prepared for the kind of night that Ethan could have following his surgery, but then again, I don't know how anyone can prepare you for seeing your child struggle. As far as his heart goes, Ethan is doing great - still not on any heart meds and keeping his blood pressure in a great range. Praise God for this.

About last night - Ethan was really agitated all night long - only resting for 5 to 10 minutes at a time and then thrashing around and moaning. We had to restrain him (sometime it took 3 of us) to keep him from tugging out all the tubes. We tried holding him and then just letting him lay in his bed, nothing made him comfortable. He definitely got a lot of drugs for the pain and agitation, but they didn't seem to work very well. It is frustrating that the nurses and doctors can't just say "do this and that" and then he will be fine. It is a guessing game with each child. Each one is individual and what works for one doesn't work for another. So, all they can do is try one thing and if that doesn't work, try something else. Ethan's poor nurse and doctor had some very frustrated parents and a very emotional mom to deal with, in addition to Ethan!

But, since 6am, he has been resting the most comfortably since they took him off the vent. He no longer has the IV line in his neck (OUCH!) and his left hand. So, he can suck his left thumb and lay on his side or stomach much more comfortably. Part of his thrashing around last night was his attempt to roll onto his stomach to sleep, and when we restrained him, it made him mad, which made him hurt.

We have been told several times that healing from a thoracotomy (side incision) is much more painful than healing from open heart surgery - this is what adults have said who have been through heart surgery.

Another positive this morning is that he has been able to cough on his own and get some of the junk out of his throat. Hopefully he can continue to do this as there is a risk of pneumonia if that stuff goes into his lungs. But coughing hurts, which just upsets him more.

The labs they took this morning came back saying his sodium is low, so they have him on some meds to stabilize that. They are not quite sure why this is happening. For this reason, he will stay in the PICU because there is a risk of a seizure if his sodium level gets too low. They will monitor it closely and we will pray that the meds help. He is also on Lasix to make him pee more.

He is still hoarse and the surgeon explained to me this morning that in the type of surgery that Ethan had, there is a risk of damage to a vocal chord nerve that wraps around his aortic artery. He did see part of the nerve while he was doing the repair and was able to move it out of the way, but there is still a risk that it was damaged during surgery. He said that most of the time it will heal, but sometimes it doesn't and I am really not sure what all that means, but we will cross that bridge when we get there. He was hoarse for 6 weeks after his first surgery, so I know it can take time for the vocal chords to heal.

Please keep praying for us.