Memorial Open House

Beth and I would like to welcome you all to our home for a Memorial Open House this Saturday, April 13th from 1:00pm - 3:00pm.  We would like to gather all those who offered prayers and support to help us celebrate Shawn's fighting spirit and the inspiration that was his life.  

Shawn's Memorial Open House

15502 Farmland Ct

Noblesville, IN 46060

Saturday 

April 13, 2013

1:00 - 3:00 PM

Your fight is over. Rest now my little warrior.

About 2:30am this morning Shawn started bleeding out of his wound from last night's surgery.  The nurses were unable to keep up with the blood and fluid losses and his little heart couldn't take it anymore.  At 4:00am they had exhausted all options... the nurses wrapped him up, placed him in our arms, pulled his breathing tube, and he passed away peacefully a few minutes later.  He was only with us for a short while but in that time he has shown me the strength of a million lifetimes.  He has inspired  me and enlightened me to the greatness of the human spirit.  He was taken from us far too early but we are grateful for the little time we did have with him.

I'd like to give a big thank you to the medical staff at University and Riley Hospitals for doing everything they could to give us this precious time with our son.  And thanks to all of you whose thoughts and prayers lifted him up and proved that miracles do happen. 

You fought a good fight but now your fight is over.  Rest now, my little warrior.  Rest now in peace.  We love you. 

Out of Surgery

We just spoke with the surgeon and Shawn is out of surgery and back in the ICU.  The good news is that he made it but the bad news is that just about his entire colon was gray dead tissue and had to be removed as well as a small section of his small intestine.  They also bruised a section of his liver during the surgery which ruptured and bled.  They had a lot of trouble with bleeding with all the heart meds he is on hurting his clotting ability so he is getting a heavy dose of blood transfusion.  His belly was left open since the surgeon will need to go back in in 24 to 48 hours to ensure the diseased tissue did not spread further and to clean up from the excess bleeding.  The next 24 hours will be very scary as they try to stabilize Shawn from this surgery coupled with the heart issues.

The surgeon said that if and when everything else gets sorted out with his heart he will be able to make Shawn digestive system work properly without a colon.  This procedure should have a minimal impact  on his life.

This will have a major affect on his surgical plan and will likely push everything back regarding his heart until this mess is sorted out and stable.

I hope this makes sense...... I'm an emotional wreck right now.

Emergent Abdominal Surgery

Just about right after I posted today, Shawn started a major slide for the worse.  His abdomen started swelling, his sats went all over the place, and his blood pressure plummeted.  The doctors believed he may have caught an infection.  Beth and I immediately feared the worse.  They started an aggressive antibiotic treatment but it was unlikely that his body would be able to sustain long enough for the treatment to work.  They ordered an x-ray of his belly and it showed a possible hole in his intestine that is leaking fluid into his abdomen wall.  This fluid is causing swelling and pressure to build.  This pressure is making it impossible for Shawn's ventilator to provide adequate support to his body and heart.  This news was devastating.  For Shawn to make it this far...

Our little boy, Shawn, is currently in the operating room as I type this with trembling hands.  At this point it was our only option for the surgeons to open his tummy and investigate.  If they see dead portions of intestines they will remove and patch them.  At the very least they will try and reduce some of the pressures he is experiencing and give his ventilator a fighting chance to allow him more time for the antibiotics to take affect.

Your prayers are needing now more than ever as our little heart warrior is fighting another battle against an unknown enemy.

Day 12 and a little of Day 13 too

His arrhythmia persisted all yesterday.  Further down on his dopamine and fentanyl as well.  Pretty quiet day which all changed early this morning.  Around 5:00am this morning he was having some major fits with low heart rates in the 100s and dropping blood pressure.  His lactates in his blood were also creeping up which is a sign his heart muscles were under stress.  He lost his right hand IV which was giving him the prostagladin medication to keep his ductus open so he was not getting this medication for two minutes which may have caused the issues.  After about 2 or 3 hours (felt like an eternity to Beth and I) he came out of it, numbers came up and stabilized, and he is much better now.  Sats, heart rate, and blood pressure right where they want it.  Lactates in his blood also normalized.  They ran another central line this morning, this one in his femoral artery, which should be a more permanent access line to administer some of his medications.

Also this morning he decided to come out of his arrythmia and is now beating normally at a rate of 153 beats per minute!

Shawn's Snoedel hoodie when they turn the lights on!  Thanks Aunt Erica!

Day 10 & 11 - Our first bad day

Besides getting the news for Shawn's surgical plan, Friday was a relatively dull day in terms of Shawn's recovery and improvements.  He was negative on fluids so his swelling continues to lessen (slowly but surely) and further decreasing his medications.  Beth and I were able to change Shawn's diaper a couple of times so that was exciting.  Never thought I'd see myself be excited about changing diapers!

Yesterday flat out stunk!  Shawn evidently is growing tired of being a poster child of recovery and felt like being a little rebellious.  He is now having an irregular heart beat or arrhythmia.  It's very scary as a parent when first off you don't know what that means and secondly you have no idea the severity of the complications it can cause.  To put it simply it is not good in the long term but for the short term Shawn seems to be tolerating it well. The doctors and nurses are alerted by it but not alarmed.  Sometimes these heart kids just start this and it can last for a couple hours to a couple days.  In Shawn's case the strong belief is that since his swelling is going down his heart is now irritated by the rather large metal stent inside it.  His numbers still look good and his blood pressure is handling it well so the action plan moving towards Thursday is, "Keep an eye on it."

Shawn's Surgical Plan

The doctors at Riley have Shawn penciled in for next Thursday, April 11, 2013 for his next procedure. They are going to proceed with what is called the Hybrid procedure and not the traditional Norwood approach.

Stage I, Part 1

The first stage of the procedure will be to remove the stent placed in this atrial septum at birth and perform an atrial septectomy to create a permanent hole for communication between the upper two chambers.  This will ensure that he is mixing oxygenated blood and non-oxygenated blood sufficiently.  Next they will band his pulmonary arteries so to restrict blood flow and not flood his lungs and starve his body of blood.  This will all happen on Thursday.  He will need to go on bypass for a short time to allow for the septectomy.  This is typically not necessary but they feel differently in Shawn's case since the current stent is quite long and may be interfering with proper drainage from the heart.

Stage I, Part 2

The second part of this procedure will happen the following day or early the next week.  They will place a stent in his ductus (PDA) to allow him to get off of the prostaglandin medication that is keeping it open.  There is potential for major side effects with prolonged exposure to this medication.  After next week his heart should look like the picture above except for the atrial septum stent where he'll just have a hole and not a stent.

Stage II, Part 1 (Norwood) & Part 2 (Glenn)

The idea of the Hybrid approach (and the main reason it's Shawn's best option) is to minimize the trauma to the heart right after birth.  It allows some time for the heart to grow stronger and in Shawn's case his lungs to heal.  The doctors believe that if they went right into the Norwood  after birth then his heart would not be strong enough after the surgery to over power the pressures in his lungs.  The typical Stage II of the Hybrid approach would combine the Norwood and the Glenn, as previously described, into one large procedure at 4 - 6 months of age.  This will differ for Shawn as well.  Instead of one large trauma to the heart at 4 - 6 months the thinking is to break this stage into two smaller traumas to the heart and continue to give his lungs the maximum amount of time to heal.  They will do all the steps of the Norwood at around 4 months then he'll come back at 8 - 9 months old for the steps of the Glenn.  Both procedures have been previously explained in the "About HLHS" page.

Stage III, Fontan

The third and final stage will be as previously described at 2 - 4 years.

All of this is subject to change depending on the success of the procedures and the state of his recoveries.

Going into this morning I was hoping to feel relief and excitement that we would finally have a plan going forward.  Now that I know what I know I am just afraid.  The idea that he will have 5 major procedures within his first year of life is just flat out scary.

Day 9

Yesterday was pretty quiet and Shawn's standard m. o.  He seemed to be playing a little game with the RN where he'd drop his sats and the nurse would increase his ventilator oxygen then his sats would go too high and the nurse would lower this oxygen.  This went on about every 5 to 10 minutes throughout the day.  I could almost see a little grin on his face!

I've been feeling a little melancholy the last couple of days as my excitement and adrenaline of the delivery wore off and was replaced with what I imagine to be the usual feelings of a worried parent with a child in the ICU.  I have even started thinking that maybe I initially misunderstood the doctors and it wasn't the delivery that was his major risk and my enthusiasm was misplaced.  I was also starting to worry that I was getting overly confident and optimistic about his recovery thus far.  I told Dr. Cordes (Shawn's cardiologist on duty this week) how I felt and he told me my enthusiasm was not misplaced.  The odds stacked against him at the delivery and first surgery were extraordinary.  They were just as excited as we were for him to be here at this point to continue fighting.  He also echoed my same worries that they are even battling their own confidence and optimism during this recovery as he is doing so well.  They still need to remind themselves that he is still a very special case needing specific treatment and a custom surgical plan.  I would like to thank Dr. Cordes for taking that time with me yesterday and to validate my feelings of late and somewhat calm a few of my worries.

This morning is Riley's surgical conference and as I mentioned in the last post we'll have a better idea of the plan going forward for Shawn.  I have been told that our doctors here have been talking at length with Cincinnati and Boston Children's hospitals about Shawn's case.  It is comforting to know that the best of the best in the country are collaborating to help give my son the best care possible.  I'll post again this afternoon after we talk with the doctors.

Day 8 - Happy 1 Week Birthday, Shawn!!

Well you were brought into this world 1 week from yesterday with quite a splash!  Your head at 9:46 am and the rest of your body 4 minutes later.  The last week has not been without its ups and down... mostly in oxygen saturations (a little inside joke for me and him), but you have blown away our expectations.  You have inspired us all with your strength and resolve.  Please continue to persevere and know that you have a massive community of support and the prayers of many behind you, cheering you on.  We love you, my son....my little heart warrior!

 Shawn, 1 week old!

Yesterday they already discontinued the lung percussion therapy since his x-rays looked good.  That's good since I saw them do one yesterday morning before rounds and boy oh boy did he not like that!  He is off insulin and continuing to ween off the dopamine.  His breast milk feed is up to 10 mL/hr now.  They are scheduling an echo for today to get a full and complete pic of his heart.  Every Friday they have a surgical meeting to discuss any upcoming surgical planes.  Tomorrow Shawn will be the feature topic.  So hopefully after tomorrow morning we'll have a better idea about the whens, whats, whys, and hows of his next procedure and possibly the game plan for future procedures.

His big boy socks!

Day 6 & 7

Beth and I fell ill yesterday so my apologies for not updating.  We both woke up with nausea and diarrhea so we weren't able to see Shawn.  It tore me apart not being able to be with him, but it was for the best.  So with that I'll update two days in this post.

Monday started rough but ended well.  Shawn is now completely off his paralyzing medication and he woke up within an hour of them stopping the line.  He's moving his feet and hands which will help push the excess fluids in his tissue back into his blood stream.  He's been opening his eyes too!  Beth and I were pretty thrilled about that.  However, he did not like being able to move at first and it was a little tense for a couple hours Monday morning.  He was grimacing in pain it looked like, so they upped his pain meds.  He would fight the ventilator and hold his breath which plummeted his oxygen sats into the 40s so a couple of the doctors had to come in and just watch him for a bit.  He settled down a little after noon and he's been pretty good since.  Sats holding strong in the upper 70s to lower 80s.  Moving his little feet and now taking his own breaths!  The ventilator still makes sure he gets his 28 breaths a minute but it doesn't stop him from starting one on his own.  If he initiates a breath the vent will help him and make sure it's not like breathing through a straw.  The monitor will show a red line on breaths he starts and a green line on the vent breaths.... it's pretty cool and I have another thing to watch!

Although we were sick and unable to see Shawn yesterday we were able to get a hold of the nurse in charge and get updates.  Shawn was good and stable all day.  They stopped the direct nutrition line (TPN) and he's just straight breast milk which makes Beth happy!  He's down on his dopamine drip and tolerating that well.  His x-ray from yesterday showed that his right upper lung was slightly deflated.  This is common for kids on the ventilator.  So he is now getting lung percussion therapy every two hours where they take a little suction cup looking device and pat his upper chest and back.  I'd like to give a big shout out and a thank you to Jill, Shawn's nurse yesterday, for keeping us informed.  She called us yesterday afternoon so we could FaceTime with our little guy!  So awesome!  Thanks, Jill!  

Day 5 - A Word of Caution

Day 5 brings more stability and yet more improvement.  His lungs continue to slowly get better as the pressure needed from his ventilator is lessening which is a good indication of the fluid leaving the lungs.  They started Shawn on a slow drip of Beth's breast milk (3mL/hour) so she is thrilled to finally see some fruits of her pumping labors!  He also had his first poop yesterday!  It's nice to celebrate the simple things... makes him seem more like a normal baby boy.

There's not much to update as he was pretty stable yesterday and they haven't wanted to rock the boat too much just yet so I'll take this opportunity to discuss some words of caution.  I'm sure many have noticed a change of tone on this blog since Shawn's birth.  Justifiably so, I'd say, considering how well the delivery and atrial septostomy went.  The prognosis and likely outcomes of last Wednesday's events as the doctors were quoting us leading up to the big day led Beth and I to think and plan for the worst and hold onto only a small thread of hope.  As hope turned into reality throughout the course of Wednesday morning, joy washed over me.  Our son is alive and we are so very blessed to be at this point today.  However, I do not want my elation to misdirect anyone.  I do not want to give the impression that he is fine and will be coming home soon.  Shawn is a very sick 5 day old in intensive care.  We have made very tiny baby steps of improvements towards recovery and all that hard work can be wiped away in a matter of minutes.  The issues with the intact atrial septum caused major back pressure in his lungs and pulmonary vasculature causing severe hypertension and developmental issues.  These will take weeks if not months to heal and correct themselves.    Right now we are playing a waiting game as they tweak little things here and there as he is able to provide more and more support for himself.  Nothing major will happen this week.  They want to make sure he is as strong as possible for the next procedure.  We are in for a long hard road ahead and we are only getting started.

Please continue your prayers and thoughts for little Shawn and all the nurses and doctors at Riley Children's Hospital as they continue to work miracles on our little guy.