Another good day

Luke has had another good day here. .. we are so thankful!  He now looks so much better with his breathing and chest tubes out, and most of the lines too.  I got to hold him today for the first time.  He's back to nursing and having some more awake time.   He's not totally himself but is starting to make a few of his normal facial expressions.   A couple prayer points would be for his blood pressure to come down so he could come off that medication soon,  and for no nausea so he could keep more of his milk down.  We are so grateful for our little boy doing so well.   He was technically discharged from ICU today, but there were no available beds in the normal cardiac unit so we are still in ICU for now.  Thanks everyone for your amazing support and for praying!

Update

Luke had a good day today!  He got his breathing tube out several hours ago, and one by one, the other lines and tubes are being removed.  The doctors seem very happy with his progress so far.  His heart is regulating itself now with a good sinus rhythm.   A couple things to pray for are for his heart rate to come up a little bit and his blood pressure to come down a bit.  He's been mostly asleep all day with a brief awake time just a few moments ago where he was able to have a little milk from a bottle. ..his first food apart from his IV.  He may be able to leave ICU tomorrow and go to the other part of the floor, but we aren't sure yet. 

Grateful for today

The doctors are very happy with how Luke is doing this evening.  He has quite a few lines and tubes and medications which are assisting his body regulate everything as he recovers.   Thet keep saying everything is looking great and they may be able to remove his breathing tube tomorrow.  We are cautious as we know there is a ways to go, but we are so grateful to God for getting Luke through today!  Praise God for His power and His care for us in answering prayer.  We've been overwhelmed with support as so many are praying for our little guy.  Thank you! 

Things to keep praying for:
For normal heart rhythms and pace on his own, for all excess fluid to drain, for regaining his ability to eat normally over the next few days, for the repairs to take really well, and for the other two minor issues to resolve on their own.  Brian and I feel much better after today but could still use prayer for rest and strength.

Thank you!

Out of surgery

He is out of surgery.  Thank you God!  The surgeon felt the repairs went well and none of the potential complications we were concerned about were an issue to this point.  There are two other minor issues they found that will need to be watched but they are not very concerned about those.  His heart is working on its own but with a lot of support until it can recover more from surgery.  The next 24 hours are  critical but the surgeon felt he was on track or a little ahead of schedule for a good recovery.   We can see him in ICU in about an hour.

Update

Luke is now on bypass and they've completed working on the aorta, and are now working on VSD.  That's all we know.  We hope to hear more in an hour.  Thank you for praying for us through this time.

Lukes surgery

Luke will start his surgery tomorrow at 7.30am (Monday).  They estimate that it will take 4 to 6 hour's and we will rejoin him in ICU. Please pray that there will be no problems and complications and that he will not need a pacemaker. There is a small risk of this if one particular point of the operation isnt done perfectly.

Thank you for praying.

Brother hugs

Surgery Monday

We are back in Pennsylvania now and heading back to Boston for Pre Op tomorrow (Sunday), and surgery Monday morning.  He will be admitted to the hospital Sunday night.  At least one of us should always be able to stay with him in the hospital.

Luke is doing pretty well the last few days.  At times he seems pretty normal and happy.  At other times we can see him weakening and his breathing becoming more labored.  The Dr. said that he is just reaching the point now where we can see signs of his heart disease affecting the rest of his body in things like not eating well, heavier breathing, sweating, no weight gain, etc.  As much as we are dreading this surgery and next few weeks, we are grateful to be here and to be under such good care to get him the help he needs so he does not keep deteriorating.  Up until a week or two ago, he seemed like a healthy and happy boy with no problems.

We are thankful for:
God giving us this precious little boy!
A great team of doctors in Boston
Support from family and friends
Justice doing so well with his grandparents

Please pray for:
God to completely heal Luke
The surgeon's hands, skill, and wisdom as he is repairing Luke's heart
A quick and complication-free recovery.
Peace and grace for Brian and I and our whole family.

Luke on the road Friday

Luke's Test Results

The tests today showed that Luke has two significant heart issues and potentially a third that does not require attention at this time.  He did well all day, even though he had to fast for his echocardiogram.  Our doctor spent a significant amount of time explaining the nature of the heart defects to us and assured us that there is the highest likelihood that Luke will have a normal life that includes an active childhood and sports with a very small likelihood of future intervention.  He will likely need somewhat regular echocardiograms after his open-heart surgery to make sure that his heart is healing and functions normally.  This is an incredible relief to us.  

Luke's surgery will require fixing the narrowed portion of his aorta and it will require the closure of a large hole between his ventricles. 

The surgery is tentatively scheduled for the first part of next week. 

The doctor estimates a 2 week in-hospital recovery period.  Adrienne and I should be able to feed and care for Luke very soon after the surgery and we have every reason to hope for a healthy thriving boy when we check out of the hospital. 

He is now on medication to drain fluid from his lungs to help him breath more easily. 

*Please pray for Luke that in the next few days before his surgery that he will remain stable in his heart rhythms and overall health and that he will be able to eat well so as to go into his operation strong and healthy.

*Please pray that Luke will be assigned the best surgeon for the job.