Coming out of it.

Jackie boy is starting to come out of it; showing promise that his heart rhythm is starting to sync up . He finally has an occasional P wave, (since I just learned what in the heck a P wave is, let me now school you: a P wave an electrical current that startes the initiation of a heart beat). For my doctor friends out there, please ignore how pedestrian my explanation is).

Slowly, getting back to our boy.

He is all smiles, except for when the evil gas rears it's ugly head.

He he, rears. Get it?

It's a good thing I still have my wonderful sense of humor to accompany me.

His look of shock when I told him what happened to his chest when he was sleeping.

He is also SO much more alert. Prior to the surgery he slept practically all day. And then after the surgery he was drugged so as to help keep him still. But, he is making up for all the sleep he's been getting now. Yesterday he was awake from two in the afternoon till eleven. At which point I had a tiny breakdown.

I called Chad back from home to spend the night with Jack and I went to Theresa's who lives nearby. Three nights in a row at the hospital and my single highest night of sleep was four hours. Enter. . . emotional, irrational, irritated Jamie. She's a TON of fun, biatchy too. Seven hours of sleep last night and I am a new woman. With sleep everything is possible.

I even curled my hair this morning. I just needed to do something normal.

Jack is slowly getting better. His lungs are still too wet from excess fluid due to over-circulation of the heart due to a high heart rate. Thus causing him to have a hard time breathing without some extra oxygen. See how fun medicine is? Dominons I tell you. They saw his heart rhythm for a few minutes when they turned the pacer off. Happy with the progress, they are "cautiously optimistic".

They put him back on the pacer for the day hoping that another day and he will then beat completely in sinus rhythm. So, that's whats up for today.

They are trying to figure you out, Jack.

How about you do all of us, especially Dr. Alkon a favor and give us a clue.

For the past 48 hours Jack has had an alarmingly high heart rate. They worked on him for hours yesterday trying to slow it down. They think they understand why it is high; but it isn't responding to the medicines like it should. So that is confusing for them.

Occasionally after such a major repair the heart swells and that causes irritation between the sinus node and the av node. Thus creating confusion with the heart rhythm. This what they believe is happening. Though this far out from surgery it is not typical and it generally responds to the medicine to slow the rhythm. So, everyone is kind of stumped. And, it's been too long at this high of a rate 160 beats per minute when he is sleeping and between 160 to190 when he is awake.

Ugh.

Don't set limits on this boy.

Absolutely every step of the way Jack has dramatically exceeded my expectations. And, my sweet son, we need you to do it again. I know we are asking you to be strong and to do more; but more, you must. Your heart rate has risen dramatically and is ticking away at 180 beats per minute. Please, chill out; take a chill pill.

Mmm-kay?

Also, tell your mitral value to stop misbehaving. That'd be swell.

Jack's mitral value's leakage has increased more than they would like. It is causing his heart rate to rise and beat rapidly, consistently. I asked the cardiologist if it was possible for it to go back to minimal leakage (which is what they left the operating room at).

Dr. Alkon reported that it was possible.

Not satisfied with that answer I asked if it was probable.

Dr. Alkon hesitated and said he didn't want to say.

. . .this isn't terrible, but it also isn't good. It has opened the door to the possibility of going back in and replacing that valve.

But, I know my boy. He has defied the odds every single step of the way and I know it is within him to do so again.

. . .come-on Jackie boy!

Carry me through.

Today was good; hard moments though. Difficult to stand idly by while your child is in pain, especially difficult to sit and watch them suffer knowing that it is ultimately for their own good. If we give Jack too much morphine then it snows him and he doesn't breath well. If we don't move and adjust him here and there then fluid builds up around his heart and that's no good either.

So we do the things to him that hurt and we don't give him everything we can because we love him and we know what is best for him. But, we don't ask him to do more than we know he can do. We believe in him, rally around him and feel just plain awful watching him struggle with what we are calling upon him to do.

Sound familiar?

I swear, the plan of salvation similarities are just too good for me to ignore. We are all here in this mortal state, being called upon in different ways to do hard things. Things that we beg and plead with Heavenly Father to just take away. Make it better. And sometimes he does,

. . .and sometimes he doesn't. And them's the brakes. No amount of anger, resentfulness, pleading or bargaining will change the fact that we are all subject to the will of a loving Father in Heaven.

Here, in this moment though there is a tremendous opportunity. Opportunity to draw nearer to God; to come to know yourself and his ways more intimately. A chance to rely on something bigger than you. Your chance to show that you trust and believe that our Father in Heaven knows you and loves you personally. That he knows your sorrows. Once you do this, submit to the will of the Father then; that is the moment where your capacity to accept and feel the strength of the spirit can grow immensely.

Submitting to the will of the Father is part of it, the other part of it is in the asking; prayer. Our prayers and the prayers offered by many on our behalf. What a difference this has made, all the difference. Asking for help, understanding and strength to endure. These past days in the hospital have been hard and at times just downright awful but they've also been incredibly wonderful. We have seen miracles, felt the strength of the spirt being poured out over us and then that same comforting spirit has resided mightily with us, carrying all of us through these times.

These people.

Are. . .totally AWESOME!

Here is the lead surgeon, Dr. Derby, doing a stop and check this afternoon.

Medicine is one of the lucky professions that actually mean something to people. We are just so incredibly thankful for modern medicine and the people who dedicate their lives to it. They give so many years of their lives to becoming proficient at their chosen field of work. Then they continue by giving long hours; working through exhaustion and stress.

The level of intelligence, diligence and just plain hard work they give is awe inspiring. We just couldn't be more grateful for them and the future they have blessed Jack with.

Here I am with Dr. Stock, Jack's cardiologist. We've become quite acquainted over these past months. I started going to him when I was pregnant and then once Jack was born about every two weeks.

This post just wouldn't be complete without a shout-out to all the nurses. They are amazing. They buzz around the room completing all the many many tasks they are to do. Jack has thus far been on a one to one nursing level. Meaning his nurse only has him for a patient.

All of yesterday and until just lately here we've had a steady stream of about six different people at a time working on our dear Jack. This past couple of hours it has slowed down a bit. So that's nice. They are an incredible team, this entire floor is only pediatric ICU heart patients. They work amazingly well together, everyone has their specific job and seeing all of them doing it with such speed and precision is something.

My last post I wrote a bit about the trouble Jack had coming off the ventilator. We only saw them in action for a brief moment but they were a moving! Around twelve different people all working together with such precise determination all towards one goal. It is a sight. And also terrifying.

Chad asked Dr. Grimaldi how she would rate Jack's recovery,

"gold star, but that can change at any moment. We are all very very happy though, he has done remarkably well."

Through the forest

A little excitement around here, they've taken the endo track ea tube out. And he liked it in, so he decided to stop breathing as a protest. I happened to be in the lactation room at the time, I come out and see my friend briskly walking away from Jack's room with tears in her eyes.

Then I walk further down the hall to see about a dozen people working on and bagging Jack.

Um, cue sheer terror.

Dr. Grimaldi looked up at us and said, "everything is under control, but please let us do our jobs and go out to the waiting room. I'll come for you once he is stable."

We went out to the waiting room and waited. I think we all felt concerned but also knew that this was just part of the process.

Dr. Grimaldi came out about fifteen minutes later and invited us back into the room. Told us he was fine that she didn't re intubate him, that he pulled out of it on his own.

Chad told her that he could tell she meant business because she took off her white coat. She smiled and said that she has a couple of levels for changing depending upon how concerned she is. The first level is removing of the white coat, then the next level up is pulling her hair back.

I looked over and noticed that her hair was pulled up in a sloppy ponytail.

So, things are still good. Chaotic though. Lots of people working on him, hovering over seeing to his care.

He is resting comfortably now though. Another deep breath.

Unusual anatomy.

I mean, you know how the Meads roll after all. Why in world would we start to do things 'normally' at this point.

I've talked to I think five different members of the team now and all of them have confirmed that they have never seen anatomy like Jacks.

I could have totally called that one. I mean once they saw the wristband and saw the last name Mead, they should have called their bookie. We're that awesome.

But seriously, things could not have gone better. Jack's heart repair was a Tetrolgy of Fallot and an AV canal. But it wasn't a typical AV canal as it was missing they 'typical' top portion and the bottom instead of missing was turned inward like a 'v'. This complicated the repair of the Tetrolgy for the surgeons as it moved the VSD hole up and at a sharp angle. Dr. Derby said they were almost standing on their heads to get into the correct position to even see what they were working on.

But they did it, all of them: Dr. Derby, Dr. Nygro, Dr. Morrell, Dr. Stock, Dr. Ellsworth, Dr. Grimaldi, all of the nurses and wonderful support staff. They give the term professionals a higher meaning.

Each one as we've spoken about the surgery are practically beaming. They are so happy with how well it went. The first doctor said the outcome was nothing short of a miracle. An incredibly complicated, unusual repair followed by an outcome they say you dream of.

Which is awesome; cause we've got us some big dreams for this boy.