Birthdays, Blindsides, and Goodbye Kisses

We couldn't believe how quickly September had come and gone.  We were in full-scale planning for all things Fall & Winter.  October is a jam packed Birthday month.  Josiah was about to turn 4.  My birthday is at the end of the month.  We had a birthday celebration planned.  Our annual trip to the pumpkin patch was approaching.  We decided, this year, to bypass the mall trick-or-treating and take the boys "real" trick-or-treating - we were going with Josiah's best friend & her family!  Things familiar and new - we couldn't wait.

The boys had their flu shots.  Carl had a few MD appointments.  By Columbus Day weekend, we all had colds.  New England living makes this a common occurrence - cold one day, hot the next.  This wasn't unusual, nor did it concern us.

On Sunday, October 11th, family gathered to celebrate the 4 October birthdays.  It was a beautiful day.  Carl spent a lot of time outside with the boys.  We enjoyed good food, exchanged gifts, had cake, and celebrated a day of making memories.  The boys were happy.  I was happy.  Carl was happy.

On Monday, Josiah turned 4.   Carl had an MD appt.  I took the boys to a dentist appointment.  After, we met up with Carl at the YMCA.  We had registered the big boys for their first-ever mud run!  We spent a beautiful afternoon together.  It was a gorgeous day.  The boys had a blast and each won a medal.  Carl got a call, from his doctor, in the afternoon.  Carl had pneumonia.

Carl had gone through bouts of pneumonia countless times in his life.  This was not new to him.  It was not concerning.  A prescription was called in and we headed home.  The boys had school on Tuesday.

Tuesday & Wednesday were normal school days.  They were routine, at home, for Carl & I.  Thursday morning, we put the kids on their buses, for school.  Carl waved goodbye as the buses drove away - just as he does every morning.

Carl didn't seem to be getting better.  If anything, he seemed worse.  After some pleading, and a call to the MD, Carl agreed to let me drive him to the e.r.  We were sure he simply needed a more powerful antibiotic.  We weren't concerned.  Josiah and I brought Carl to the e.r. and said we'd see him later.

Carl was admitted to the hospital, for pneumonia.  He was being pumped full of antibiotics.  Friday, the boys and I went about our normal routine.  We talked to Daddy on the phone, Friday night.

By Saturday morning, I was concerned about Josiah's cough.  So, I bypassed the pediatrician and headed straight to the Children's Hospital.  I missed Carl & wished he were with us.  I thought about the last 10 years of Carl's health issues - chronic ulcers, several near death experiences, and several major surgeries.  He came through all of it.  He was a fighter.  This was just pneumonia.  This was nothing, comparatively speaking.

At 11am, we were still in the e.r.  Josiah had been seen but we were waiting for scripts, etc.  Josiah had bronchitis and an ear infection.  I realized that I had missed a call from the local hospital.  The message - Carl was in critical condition.  I called & spoke with the ICU MD.  Carl had strep pneumonia which had seeped into his blood stream; he was in septic shock.  I looked at the 3 boys through the window of that little room.  I couldn't believe what I was hearing.

We were able to leave a short time later.  Carl's brother was cutting a trip short; he was headed home to be with Carl. 

Carl's condition continued to spiral.  Strep pneumonia.  Septic shock.  Kidney failure.  Catastrophic medical phenomena continued.  I made two trips to the hospital to see him.  I kissed him, held his hand, thanked him for being my husband, thanked him for being an awesome father to our children.  I begged him to fight & told him how much we loved him.  His brother spent hours at his bedside.

On Monday, October 19th, at 8:13am - Carl took his last breath.

How had we gotten here?  How could I be saying goodbye to my Love?  How could this be happening?  One week before, we cheered our boys on during their mud run.  Now I prepared for the bus to arrive home.  Now I had to tell the boys that Daddy was gone.

A week before, it was picture perfect.  It was perfect until it was no longer.....

What a Difference a Week Makes

It's hard to believe what a difference a week makes.

One week ago, right now, we were sitting in a small conference room at Children's Hospital, speaking to our son's surgeon.  Josiah had been in the operating room since 8am.  The surgeon was about to go into the room to perform open-heart surgery on our little man.  The surgery was over at 11:40am and the surgeon came out to discuss the successful operation.  Josiah spent two days in ICU, then two days in the cardiac unit.  We came home on Sunday.

Josiah is stronger than ever.  He is feeding and sleeping well.  He continues to show some signs of discomfort which is readily eased by Tylenol.

His EI worker comes out today to work with him.  Tomorrow, we are off to Children's for his follow-up sedated echo cardiogram.  Next week, we have a follow-up at the pediatrician's office.

I am thankful for this past week and in awe of my son's strength and determination.

Josiah truly is my little hero.

48 Hours Post Surgery

Josiah's progress continues to be remarkable :)
 
Josiah slept until almost 9am.  Upon waking up, his central line was removed, he got a chest x-ray, and nursed again.  He is such an amazing little man.  The chest x-ray results were wonderful.....everything looks great!  He was quickly transferred out of ICU and into the regular cardiac unit. 

The surgeon (Dr. E) stopped by and marveled at how well Josiah is doing.  He would like Josiah to have another sedated echo cardiogram to confirm that everything is well (which they believe to be true).  The nurse practitioner scheduled one for Monday morning, but the surgeon is saying that we will likely be discharged home before Monday a.m. - OMG, what great news!!!!  That will simply require a trip back later next week for the echo (as an outpatient).  I couldn't be more thrilled.

The cardiologist (Dr. P) stopped by and, also, marveled at how well Josiah is doing.  He, too, suggested we should be discharged home over the weekend.  We talked about the surgery success.  As we had already been told, Josiah's VSD was larger than expected.  He also had 5-6 ASD's.  All holes were successfully repaired.  Josiah also had a leaky valve, which we hadn't been told (it matters not, really).  That, too, was repaired successfully.  The cardiologist listened to Josiah's heart and chuckled stating, "He sounds great; you would never know that he used to have heart disease."  Those are words a mother loves to hear :)

Josiah's is just now getting a Synagis shot.  When I was first told that he was going to get one, I questioned it as Josiah had his first Synagis shot last week and is not due again until mid-February.  Then I learned something new.  Synagis is wiped out with bypass.  Therefore, he hasn't had any in his system since Wednesday.  Who knew???  LOL.  We'll update the Synagis schedule with the pedi, and he will get his last two doses there.  The cardiologist said it isn't necessary as "Josiah is no longer a high-risk baby."  (Again, great words to hear).  But, since he just had surgery, the cardiologist agreed to smart to follow-through with the next two doses to cover the 6-8 weeks post-op. 

Carl stayed home with the older boys today (ages 2 & 5).  They were picked up from my parents house last night.  I think the boys were happy to be home because neither of them got out of bed until 1pm today LOL!!!  I miss the boys.  I miss Carl.  I miss my sister (who also lives with us).  I'm looking forward to bringing Josiah home.  I miss home <3

It's time to feed Josiah.  Then it's time to feed Mama :)

More updates to come <3

Late Night Update

Josiah has continued to progress in, what seems like, an unprecedented fashion :)

After his afternoon nap, he was allowed to nurse for the first time since prior to surgery.  He did GREAT!  He's back to his every four hours feeding routine.  The arterial line has been removed as well as several IVs.  He continues to receive medication to prevent blood-clots and a diuretic.  He's also receiving high blood pressure medication.  The surgeon explained that Josiah's heart has been essentially bench pressing 150lbs (due to the holes).  The holes are gone, yet the heart hasn't learned that it no longer needs to pump with such aggression.  The discrepancy causes his blood pressure to be high....this will improve with time.  Although he may be sent home on medication, the belief is that it will all be short-term medication.  That is such good news.

Tomorrow, Josiah's central line will be removed and he will be moved OUT OF ICU.  It's amazing how well he is doing.

While feeding him this evening, a 'code blue' was called on the unit.  The dichotomy of emotion was strange.  On the one hand, my heart poured out to the child/family who was being affected; the other half of me was thankful that it wasn't my child/family.  Some time later, I was leaving the unit to take a walk.  I used the same hallway I'd used so many times before.  I quickly came across a swarm of staff members who redirected me to a different exit.  They were in front of a room who was housed by a little boy.  I remember (previously) thinking that this child had been here awhile as the window to his room was decorated with large posters, his name, cut out snowflakes, etc.  I will simply refer to him as "W."  As I exited the unit, I walked by a small consult room.  There were two staff members talking to a young woman (who was crying).  I heard one staff member say, "We'll take everything off, clean him up, and you can spend as much time as you need."  I inwardly gasped for air.  She had just lost her little man.  How absolutely terrifying and tragic.  I keep thinking of that little boy and hope he is resting peacefully with the angels in Heaven.  Sweet eternal dreams little W.

Tonight, I learned that a dear friend had a heart attack.  He's young.  Thank God, he's ok.  It shows you that you just never know.  Always remember to hold your loved ones close & tell them you love them, often.  Hold on to the good; let go of the bad.  Harbor forgiveness, not resentment.  Be thankful, not bitter.  Enjoy every minute you're given.

It's late and I should nap.  Tomorrow, we continue our own amazing journey.  I can't wait!!!

Until then, my friends.....

First Morning in CICU

Josiah had a great night.  He continues to sleep.  His vitals remain good and he continues to be stable.

I stayed by Josiah's bedside last night.  I would say, "I slept here," but that would intimate the ability to sleep in an ICU room where staff is constantly monitoring a child's progress LOL.  Despite 'not ideal' sleep - I feel great today.  I am just so thankful for everything and everybody in my life.

Josiah has met several recovery milestones already.  This morning's plan: remove chest tube and breathing tube (plus a few others).  They will sedate him for the removal of tubes, then will allow him to wake up.  With any luck, he'll be able to eat this afternoon.  After breastfeeding exclusively for 3 months, it's been strange to not have that time with him.  I can't wait for those moments again :)

The care here is what I expected - phenomenal!  Josiah continues to prove his resolve.  He is here for a purpose; nothing is going to slow him down.  He is our littlest angel.  He's our little heart hero <3

I'm going to grab some breakfast.  I'll be back with more updates :)

Surgery was a SUCCESS

Josiah got his bath at 1:30am.  He got his last feeding from 2am-3am.  Then, he napped.  We left at 5am for the drive into Children's.  We arrived at the hospital parking garage at 6:15am and were checked in by 6:45am.  First stop, pre-op admitting.  We were escorted to the pre-op holding area.  Josiah was hungry by then.  Luckily, he recently discovered his thumb which was successful at pacifying him :)

At 7:50am, members of the team arrived.  Nurse Tom allowed us our hugs/kisses with Josiah then took him from me.  He immediately voiced a fondness for our little man.  Josiah was given an oral sedative and handled it like a trooper.  Nurse Tom wrapped Josiah in his favorite blanket, gave him his favorite stuffed animal, and CARRIED him to the O.R. (that made me smile).  Carl & I were escorted to the family waiting area.

The RN liaisons there are wonderful.  They made us comfortable, assured us that updates would be provided, and stayed in constant contact with us.  At 9am, the surgeon came in to introduce himself and explain the procedure.  The wait began.

The first call came around 10am.  Josiah had handled anesthesia well.  The incision had been made at 9:30am.  He was transferred to a heart/lung machine at 10am.  The transfer to machine went smoothly.  Josiah was stable and doing very well.  Carl & I walked around and tried to waste time.  We made our way back to the waiting room at 11am.  At 11:40, the second call came.  The repairs to the heart had been successfully completed.  He transferred smoothly off the heart/lung machine.  They were about to finish the procedure.  Josiah was stable and doing very well.  What great news!

At 12 noon, Dr. E. came in to speak with us.  The VSD was much larger than anyone predicted.  It was partially covered by a valve which is likely why it fooled us early on.  Dr. E. was able to move the valve, repair the hole, and gently slide the valve back into place.  The ASDs were numerous (about 5-6) and were all closed successfully.  They performed an echo cardiogram, which confirmed that repairs had been completed with great success.  The elevated pressure in his heart immediately registered as normal :)  Josiah is "ahead of schedule" in terms of stability and recovery - what great news this is!

He's being moved to ICU as I update this blog.  Within the hour, we will be able to see Josiah again.  We're trying to prepare for that first glimpse....pure ecstasy and, perhaps, a little heart break.  Josiah is on a breathing tube - I know that will be the hardest thing to see.  My heart is still leaping for joy that my little man has come through surgery without complication.  His heart is whole and is beating on it's own.

Josiah should be able to be removed from the breathing tube later today or tomorrow morning.  Then, he can start nursing again.  Expected stay 5-7 days.  We can't wait to bring him home.  I already miss the older boys :)

I can't thank you all enough for your kind words of support and encouragement.  We wouldn't have gotten through today without you!  It's a beautiful journey and I'm glad you're able to share it with us.

Off to ICU....I can't wait to see Josiah <3