Tomorrow

Luke has been doing very well.  Since our last update we've seen God answering requests for him to eat better and be more comfortable.   Tomorrow (Tuesday) we head back to Boston for a post op appointment.

Our growing boy

Together

The last few days

It's been great to have Luke out of the hospital and here at my parents' house.  Our last night in the hospital went pretty well as we were waiting to be discharged and getting further instruction about caring for Luke at home.  The thing that stands out about that last night was meeting other families, some of whom have been in the hospital months on end and who have much worse prognosis.  It was a humbling time.  We feel so grateful for how God has cared for us and brought Luke through his surgery.

We know so many people have prayed throughout this time, and we have seen and felt God answering!  If you don't mind keeping it up,  we'd love prayer for his continued recovery, specifically that he would have a bigger appetite,  eat more and gain weight,  that he wouldn't have a lot of pain, and that his heart would be strong and work just as it should.   The last couple days have had some ups and downs.  At times he's had lots of energy and felt great.  Other times he's been pretty fussy and not eating too well, which has been worrisome at times.  Pray with us for big strides forward and that we would not give in to worry.

Leaving the hospital

Echo

Luke was mostly calm for the Echo and removal of the pacing wires (with the help of some meds).  The two areas they repaired look great and they are happy with those.  The mitral valve has also improved on its own to where it is now a very minor issue.  The only thing that kept the Dr from giving it an "A+" was that the heart is still pumping a little weakly after surgery.  This is not uncommon and it will be rechecked in 10 days.  It is very mild.   He will need to remain on blood pressure medication for now.  His heart was used to pumping hard to push blood through the obstructed aorta...now that it's open it is still trying to overcompensate and thus his blood pressure is high.  Again this is very expected for someone with a coarc.  We are so thankful for how well he's doing and how quickly he is recovering!  He's eating reasonably well and having some smiley awake times.  We hope to leave the hospital tomorrow.

This afternoon

Please pray for the echocardiogram happening in just a little while...that he will be able to stay calm and still for it.  Also they will be removing the pacing wires which may be painful for him.  We just thought we'd ask for prayer for these things, and also that he could sleep well tonight.  We are now in a shared room and louder area. 

Things are looking good for possibly getting discharged this weekend.  

Luke is still improving

Luke is doing very well and we are moving out of the intensive care unit today. Everyone is happy with his quick progress. He will have another echocardiogram later today to make sure that his heart and arteries are doing what they are supposed to do.

First time holding him yesterday

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. 

Almost to Boston

We made it to the USA late last night and were refreshed by our brief time with my parents.  Justice is having a great time with them already.  Luke did pretty well on the long trip with some periods of seeming pretty weak and other times of having a better appetite and bring cheerful. We are now just coming into Boston.   Tomorrow at 10 we meet with our cardiologist and then Luke will have a lot of tests throughout the day including a chest xray,  ekg and a sedated echocardiogram.  After tomorrow's evaluation we will have a better idea of the timeframe for surgery.  We will get to be with him for the echo.  I think tomorrow will also consist of us getting familiar with the hospital and what's coming for our stay.   We are so appreciative of all your prayers for our family.

Luke's first trip

A Day We Won't Forget

September 9, 2013

I took Luke to our pediatrician for his routine 2 month check up.  He needed some shots and the Dr. checked all the normal stuff.  As she was listening to his heart, she kept on listening for quite a while and then she said that she thought she heard a heart murmur.  At this point she did not seem too worried and I wasn't either.  She said that many children have murmurs and often outgrow them.  But later on as she was plotting Luke's weight on his growth chart, she confirmed my recent worry that he was not gaining as he should be.  With both of these concerns combined, she referred us to a Pediatric Cardiologist, who I called right away and drove straight there.  Justice was with me, and Brian left work to meet us there.  At this office Luke had his blood oxygen levels tested and an EKG given by the nurse, which showed some irregularity in his heartbeat.  Then we went in to see the Dr. himself and he did an Echocardiogram, which is like an ultrasound of the heart.  I was holding Luke and Brian and Justice were there too.  The Dr. got the image on the screen and as soon as he saw it, his demeanor subtly changed and I knew something was quite wrong.  He said a quiet "ohhh" and had a serious expression on his face.  We braced ourselves for what he would say.  As soon as he began speaking I interrupted him and just said to him in Arabic (so Justice wouldn't catch it)  that we didn't want to scare Justice.  He understood and proceeded, watching the way he phrased things, in English for our sakes to be sure we understood with all the medical terminology.  (He was trained in the USA and has excellent English). 

He explained that Luke has quite a large hole in his heart, between the left and right ventricles.  (This is called VSD, or ventricular septal defect). It allows blood to flow from one side into the other, which it should not do.  He then showed us that his aorta is significantly narrowed towards the top of the arch that it makes.  This one is more concerning.   (It is called Coarctation of the aorta).

It was clear that this needed some help right away.  He recommended we come to Boston Children's Hospital soon, which is known to be the best for Pediatric Cardiology.  While we were still there he emailed the head of the department at Boston Children's and sent him Luke's test results and got the ball rolling.  We asked him to define what he meant by "soon," and he said he'd like to see the surgery done within 10 days or so.

We went home and within a few hours purchased tickets and packed up to fly to the States the next day. 

Guess who?