Before Surgery- no chest scars

Before Surgery- no chest scars

Monday, May 23, 2016

It is May 2016 and Luke is doing fantastic!  His last surgery was 15 months ago.  Luke remembers parts of the surgery and says "I don't want to do that again." But he does not exhibit any phobias or anxieties.  He has completed a year of preschool with no problems.  People do not even realize that Luke has any health issues unless I say something.  He is intelligent, independent,  and happy.  His only medication is a daily Aspirin.  He brings me joy daily, loves others so wholeheartedly, and finds happiness wherever he goes.  He is truly an angel on this earth!  Here are some pictures of him.  

Friday, June 5, 2015

June- 4 Months Post Fontan

Luke is fully recovered from his surgery.  He has more energy than ever before!  He has stopped being clingy and whining so often.  He is playing with friends and going out and about with me.  He is a true joy.
That being said, Luke does not have as the energy I hoped he would have.  At least twice a day he lays down with a blanket, pillow, and bottle to just relax.  I carry him often and he never tries to get out of the stroller, he rides in the shopping cart at the grocery store, and he is content to sit and play for hours.  It is sweet behavior but not normal for a 3 year old boy.  Some day he will be too heavy for me to carry so much.  I worry about that day!

Sunday, March 1, 2015

OR Pictures- Very Graphic!

Warning- If you have a queazy stomach, do not view these photos.  I just got a cd with photos of Luke during the operation, after his Fontan conduit was installed.  I'm including a few pictures.

We went to the Boise Cardiologist this week for another transthorasic echocardiogram (chest ultra sound).  The pressure through Luke's fenestration is decreased slightly, there is no fluid leakage, and things look pretty good.  His oxygen saturations were about 95%, better than ever!  Lasix was stopped so we can finally work on potty training!

Things are going better and better for Luke and all of us!

Saturday, February 21, 2015

At Home, 10 Days Post Op

We have been home for five days and things are starting to go back to normal!

We visited the cardiologist in a Boise yesterday and things looks pretty good.  They did a transthorasic echocardiogram, EKG, and physical check up.  In the echo the fenestration (small hole between the new vena cava conduit and the atrium) had a pressure gadiant of 7-8.  This is not unexpected because of the elevated pressures in the heart prior to Fontan surgery.  However it is higher than ideal (hoping for a 5).  There was no fluids leaking around the heart, which is a good sign.  His oxygen saturations were about 92% so the cardiologist opted to stop oxygen.  He decreased the lasix to once a day and said to only give pain medications when Luke is in pain.  It has been about 30 hours since the last pain medication dose and Luke is fine, even laughing.

We still cannot submerge his incision or chest tube sites.  He is sometimes acting lethargic, asking for bed at nap time and night.  But I hear it is a good 4 weeks before post Fontan kids start to show improvements from prior to surgery.

It is wonderful to be a family together again.  Thank you for all of the wonderful meals, mom getting my kids off to school, support,, and everything.

Tuesday, February 17, 2015

We Are Home!

We got home about 9:30 last night.  We had to wait for six hours at the hospital, after discharge, for oxygen to be set up. When we got home there was no oxygen on the doorstep so I had to make a few phone calls and bring the poor Norco RT out For a delivery late at night.   But we made it and we are glad to be here.

Luke is super clingy and wants to be on my lap all the time.  I though I would be getting lots done but I won't.  It's all about him right now anyway.

Thank you everyone for your prayers, fasting, love and support.  They are a great power and I know they have helped Luke through the first parts of this ordeal.

Sunday, February 15, 2015

4 Days Post Op

Luke had his last IV line pulled today.  His chest X-ray showed less fluids.  He walked around a lot.  He had a bowel movement after 5 days of nothing.  That has helped his stomach to hurt less.  He hasn't had anything for pain since  early in the morning.  He hates the taste of the medicine so I think he is just baring the pain to avoid the medicine.  But he hardly complains. My poor, tough boy.

He is still on 3/4 liter of oxygen.  We will probably go home with oxygen.  He had an Echocardiogram which showed continued elevated pressures in the atrium and pulmonary arteries.  They are hopeful that the lower elevations of Boise will help with that.  If not the cardiologist in Boise will prescribe Syldinafil (Viagra) again.   That was a pain to give because it was three times a day and tastes awful.  

We have been told we will go home tomorrow as long as the X-ray is clean.  I hope it's true.

Saturday, February 14, 2015

3 Days Post Operative

Both of the chest tubes came out today!  Luke has been up walking and eating some.  His chest x-Rays are still cloudy so we need to get him moving, coughing, and keep up with the lasix.  The bandage is off his incision site and I have included a picture of that. Mark went home today for Isaac's birthday celebration.  Luke was very sad to see him go.  He wanted me to go and daddy to stay with him.