Wednesday, December 21, 2011

Steven's ASD, Open Heart Surgery Story

Once upon a time there was a little boy named Steven Joseph.  When he was one year old, the pediatrician heard a murmur while listening to his heart.  A few months later, the cardiologist diagnosed him with Atrial Septal Defect, a hole between the upper chambers of the heart.  Before surgery, we were told the hole was the size of a dime, and it turned out there was also another tiny hole in his heart that needed one stitch.  In addition to this, his pulmonary vein was attached in the "wrong" spot, so the patch for his ASD would be a specialized curved one to allow the correct flow of blood due to the incorrect location of the vein.

The doctors decided that Steven would be ready to have his heart repaired around age 3.  We decided to wait until after the summer, so that he could enjoy a full Texas summer at the pool and beach!  After a diagnostic MRI at the hospital the month before, we met with the surgeon at Texas Children's Hospital and scheduled his operation for September 22, 2011.  This would be the day after his brother's 1st birthday!  But since we were also preparing for a move, and had been anticipating the surgery for several years, we decided to take the first slot available.

The day of pre-op tests

After a day of pre-operative tests and procedures on the 21st, we found out that Steven's surgery would need to be postponed a day due to a critically ill newborn baby who needed his surgery slot.  So we enjoyed our evening celebrating little Thomas' birthday and then spent a day at home before waking early on September 23rd, the memorial of St. Padre Pio!  We dropped off the girls with their grandpa and headed downtown with the two boys.

After a short time in the pre-op area where his vital signs were taken, they gave Steven a small sedative drink to make him sleepy when they would take him back for surgery.  He sat in his daddy's lap in a rocking chair, watching morning cartoons, until the surgery team came and the nurse took him and his "fisherman bear" and they were off to the operating room just after 7:00am.

I will say that those hours of surgery were some of the hardest of my life.  I sat with my mother-in-law, Steven Sr., and little Thomas, and tried to distract myself as much as I could.  I even tried to sleep once but was so nervous and crying so often that there was no hope in resting.  We were sitting near another family whose child was in open heart surgery.  They had about 10 people with them at all times, and I admit I was jealous of all the physical support they had there, even knowing how much prayer support we had coming from all over the world.  I felt lonely and afraid, and extremely anxious for the surgery to be over.

Little brother who was a distraction for all 

We got periodic updates from the surgical team that were maybe a bit more difficult than I'd imagined.  For one of the first updates, I was hoping they were already repairing his heart, but instead they said that they had just started the actual incision.  The prep time to put a child on a heart-lung bypass machine is very long.  It must have been about 2 hours!  At about 12:30pm we were finally told that he was out of surgery and breathing on his own.  Praise God!

We were able to see him soon after.  This was what he looked like in the Cardiovascular Intensive Care Unit.  He had lines in his neck, arm, wrist, and even his feet!  So many monitors, tubes, and needles!
That first afternoon and evening was very hard, because he really wanted a drink.  They wouldn't allow him anything for a few hours, and then only a tiny medicine cup each hour.  Oh, the pain to watch your child beg for a drink!  That was really, really hard.  But as the hours went by, he slowly woke up more, and they started to take the different lines out.

We put some videos on the iPhone for him to watch, but really the CVICU was just a miserable 24 hours.  I remember him sweetly asking for me to lie with him in his bed, but then realizing it made him hurt more.   So sad.  We did have some great nurses that were very knowledgeable and kind.  But it was so hard to see all the very sick children.  We also had to share a room with the other child whose family had been next to us in the waiting room.  The most difficult part was that during the night hours we had to switch off being with Steven and little Thomas in the Ronald McDonald room downstairs.

After those grueling hours, it was finally time to pack up the bags and move downstairs to the cardiac recovery floor!  Steven Joseph slept through the move.

That evening we put some jammies on him (which didn't last long, it was too hot!),
and he even got a Happy Meal!

Daddy played with him and his cars and knights.

And finally he got his drain removed (it was where the band-aid is, under his scar).  After the drain is out, it's much easier and less painful to move around.  The nights were hard in that room with the baby staying there too.  One night he had to get a new IV at about 2am, and that was very difficult.

But on Sunday afternoon, his sisters and cousins came to visit and he actually got out of bed for once!

We took him down to the playroom and he started playing and painting and walking!

 He was so excited and proud of himself, stating, "Mommy, I can do everything now!"

He couldn't wait to go show his sisters and cousins all the things he could do now.  It was like a complete change in about half an hour.  He went from sad and bedridden to happy and determined.  It was a beautiful thing to see.

So happy to be out of bed!

Now he could sit up and play with toys!

Later that night, our friends the K family came to visit, to bring us Holy Communion, and to take the girls home for the night.  Here we are in the hospital chapel looking at the scrapbook they made for Steven Joseph.

On Monday he was out and about, playing with balls in the hallway,

and doing some fun crafts!

Baby brother was still around.  Causing lots of trouble!  Everyone was getting bored at the hospital.

Here was the one couch bed for Mommy, Daddy, and Tommy to sleep!

We went back to the playroom where he did some dot painting.

It was right at this table when the attending doctor came to tell us we had the all-clear to go home!  In a whirlwind of half an hour we packed and ran out the door to try to beat the Houston traffic!

 With his bears and balloons in the car to go HOME!

The next day, we set up FaceTime at home on the iPhone with his friend.  He was so excited!

Here he is with the painting that I credit for his turnaround.  While painting a picture of the aquarium in the playroom at the hospital he went from sick to well in a few minutes. It's amazing what art can do for your mental well-being!

And here he is having a playdate with his buddy J a few days later.

This picture was taken before his one week appointment where they would take off the steri-strips and therefore this scary-looking red scar due to the iodine stuff we had to keep on it. 

Posing with his balloons.

Brothers in the exam room.  Lots of waiting to meet with nurses and such to make sure he was a-okay!

My little transformer dude!

After getting this all-clear from the heart clinic, he also met with our local cardiologist about a month after surgery.  All signs point to a full recovery and repair, and we will follow-up again in January and in the summer.  After that, he should only need a yearly visit to make sure his heart continues to function normally.  We can't wait for a fun spring and summer filled with baseball, beach days, and swimming!  Thanks be to God for the staff of Texas Children's Hospital who make it such an incredible place of healing for children like Steven.  Many thanks also go to the friends and family who prayed and supported us through this journey.

May we always remember "heart babies" and their families in our prayers.  We know so many personally, and I'm grateful that they were placed into my life to be a support during this time.  Some are still suffering.  Some need on-going medical procedures.  And sadly, others' hearts have only been healed in Heaven.  May God bless each of these children and their families in their times of need.

Sacred Heart of Jesus, we put our trust in You!


Patrick said...

Wonderful story for Steven! My son, Joseph was born with multiple cardiac defects and had 2 catheterizations and 2 surgerys. I know what you mean that the time during the operation is the worst... I learned to pass the time by donating blood in the hospital. I *hate* donating blood, and I knew there was nothing I could do, especially at the beginning of the operation, so it helped pass the time while at the same time knowing I was helping other kids with their surgeries later on. I'd urge you to pass this suggestion on to other cardiac parents. Also, the Dominican chaplains at Children's in DC were wonderful!

(Joey's doing well...for 1/2 of the procedures he recovered better than expected, and the others required him put on life support or resucitated with CPR, but God willing, he's doing great now!)

Neen said...

I thought that time waiting must be what purgatory is. I felt so alone and distant from everyone even the people sitting next to me. I was numb. I think J and I felt alive when they told us Morgan's heart had started back up on its own.

As you know I love heart babies so much. They are so strong. They seam to know God on a pure level and live life to the fullest no matter how long they live.

Steven is a strong, happy young man. He tackles life with all he has. I am so glad that his heart was able to be "fixed". I grew in my faith during this time in our lives and looks like you have as well. The added gifts that God sends are always better than just what we ask for.

Colleen said...

Oh, Blair. Thank you for sharing the full story with us. I have tears just streaming down my face right now! What a trial for your whole family! Praise God that Steven came through it all and is healing so well. God bless you all!

Rich said...

Amazing. It's always harder for the parent than the child, I think.

Smith said...

It sounds like you're a wonderful mother to have such wonderful children! Thanks for sharing your story.

healthcare said...

its always very tough for the parents to see the child's sufferings..hope the kid is fine now..take care

Cardiac Disorders

Anonymous said...

Thank you thank you thank you for this detailed post. I just found out that my son will be needing this surgery soon. So grateful to have found your story to help me picture it all a bit more.

Mrs. Steele said...

Thank you for posting this. It seems very similar to what my daughter has. We will be going through similar things and it was very nice to see the pictures and the tubes and everything so we are somewhat prepared for when our time comes. Thanks again and I'm very happy to hear that your son is feeling wonderfully.

Unknown said...

Thank you so much for posting your experience. My daughter have the same surgury and reading your blog help so much. Good luck and healthy for you, your beautiful son and your whole family. Thanks!

prerna said...

Thank you so much for posting this. My son is going through this same surgery and reading your blog helps us be a little better prepared about what to expect. Wish your son and your family well, very happy to know that your son is doing good.. Thanks

prerna said...

Thank you so much for posting this. My son is going through this same surgery and reading your blog helps us be a little better prepared about what to expect. Wish your son and your family well, very happy to know that your son is doing good.. Thanks

PJRT said...
This comment has been removed by the author.
PJRT said...

Hi, its so inspiring! Im 25 and will soon undergo that open heart surgery for ASD also. I'm actually searching for stuff like this before the operation to at least boost my whole being to get ready for it. Kudos! Include me in your prayers.

dustinjm19 said...

This is great to see. I am so glad I saw this blog. Our daughter is having this same procedure in a day. Thank you for posting so many pictures and telling the story behind each one.

Unknown said...
This comment has been removed by a blog administrator.
Logintohealth said...

Thanks for sharing your story. Hope the kid is fine now. Take care.
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