Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Friday, September 28, 2012

We don't fight the same battle but we fight the same war!

Sunday is the big day.  Friends, family and strangers will join together...We will join with other people...fighting.  We are not all fighting the same battle..but we are fighting the same war.  We will come together under one organization..and we will share in the struggle that is a fight against the unfair and unjust things that life can throw at any of us at any time.  We will fight HLHS, breast cancer, brain cancer, and the struggles of being a wounded veteran.   We fight hospital bills, insurance companies, and pharmacies.  We understand what it means to live in a hospital, to see our child, husband, wife or family member suffer.  We know what it means to get on our knees and BEG God for just one more day, just one more minute, one more second with our loved one.  We know what it is like to hold our breaths when the phone rings and its the doctor..will it be good news, bad news???  We don't know each other..but we understand each other.  We are mothers, father, grandparents, siblings, aunts, uncles, co-workers, bosses, next door neighbors, friends and strangers.  And on Sunday we will join together to fight...but no one should have to fight this war or this battle alone.  And we don't and never will...I have found strength , conviction and inspiration from the other beneficiaries of steps-together.  I have found kindness, support and love in Courtney and Mike Newman, the angels sent from heaven who are steps together.  I have found renewed faith, light and generosity in the people who donated to or joined our team.  We hope that you will join us...and that Sunday and for years to come that you will support steps together...

Wednesday, September 12, 2012

Life is never to busy for the rhinovirus!!!!

So our lives have been GO,GO,GO!!!  We made the big move from NJ to PA at 11:00pm on Labor Day.  We had closed days before, but with the big weekend and Nate playing four gigs, we were unable to move right after.  We spent the week cleaning, painting (well ok, my father-in law did the painting, but I picked the colors) and just settling in.  I had the horrible task of making sure our insurance was switched and effective, filling out the medicaid application and making sure we were all set up with Xavier's doctors and CHOP.  The first week flew by and our new home was feeling like just that, HOME.

Xavier enjoying his chair in our new family room!

 We packed up early Monday morning and headed to CHOP for Xavier's cath.  It is never easy to kiss him goodbye and watch the doctors  in their scrubs and gowns wheel him away.  I just kept telling myself, at least this is not an open heart surgery...but then I was quickly remembered that we will in fact be having another OHS in the near future.

Xavier's cath was LONG.  They ended up coiling 6 collateral veins in his heart.  That is a long, tedious process.  Following his cath, he had an MRI scan.  Altogether he was sedated and on the vent for 6 hours.  He came back sleeping...and slept for most of his flat time.  When he woke up he was fussy and sounded a bit congested.  We just assumed that it was from the vent, but the cath doctors did say they needed to suction his throat and nose a few times during the cath.

Waking up...

After Xavier had a chest X-ray we were moved to a private recovery room.  We expected that we would be staying the night, since the cath required intervention on Xavier's heart.  Things were going well.  He was mainly sleeping and started to drink some clear liquids.  Around 8:00 pm we started to hear more congestion in Xavier's throat and nose.  He seemed off.  He started throwing up his feeds and meds.  He threw up for most of the night and was very fussy and warm.  He had a fever, needed suctioned a few times, and was just not feeling well.  I made the mistake of packing for one day and night.  By midnight all the clothes I had packed had been thrown up on.  I was in scrubs!  By 3:00 the scrub top was thrown up on and I was in a hospital gown!! You would think a veteran heart mom would be more prepared..wishful thinking, I guess.

He woke up the next morning feeling a bit better.  He ate a little and was able to keep it down, so at around 2:30 PM on Tuesday we were discharged from the hospital. 


When we got home, he seemed ok.  He went for a walk, had a little pedilite and went to bed.  So did mommy!!!  He slept for almost 3 hours, and woke up burning up!!!  He was so hot.  His temp was 102 and he was noticeably uncomfortable.  We tired to feed him, but he was unable to keep anything down including Tylenol.  We finally decided to call the hospital and after watching him for a few hours with no change, we were off to the hospital, six hours after we were discharged.  

We got to the ER and they took us right away.  He was still so hot, and his oxygen was low..70.  He needed suctioned again, but we were able to get him to keep down some Tylenol.  The final decision was to give him IV fluids and admit him.  

In the ER, and not all that happy about it!

We got into a room around 12:30 am.  Xavier was exhausted and slept most of the night.  He coughed quite a bit in his sleep, so needless to say that mommy did not sleep.  He woke feeling better.  His fever finally broke around 11:00 am.  He started being able to eat and keep it down, but we are going slow.  We are still here, but the plan is to give him a blood transfusion to "fill up his tank" (the words of the cath doctor, not me) and get an evening discharge.  His blood labs came back positive for the a common cold really knocked him for a loop..this is why we kept him inside and really ask that sick people not be around him.  A common cold for some could be days in the hospital for X.  Thank God he didn't get sick with this last year at this could have been fatal!  We have had a ton of get well messages, prayers and positive thoughts for X.  We are so blessed.  The cath results were positive.  Xavier's heart function is good, pressures are good, Glen is working great.  He does have a leaky valve and a dilated right side, but Dr. Glatz feels that getting rid of those collateral veins will result in both of those things improving.  We are thankful that his heart is doing so well and that he is on the mend.  Thinking of all my heart mom friends who are still in the hospital with their sick kids.  I hope you all get out very soon!!!