1st Glenn-iversary

One year ago this past Saturday: 

- Sam had problems sleeping and the doctor ordered supplemental oxygen

- A quick trip to the hospital to get the O2 turned shockingly bad, as Sam's supplemental oxygen needs went from .25 liters to 3 liters by midnight

One year ago this past Sunday:

- Sam was intubated so they could figure out why he suddenly needed oxygen

- Intubation didn't help...hours past midnight, his O2 dropped to 32%, his blood pressure dropped so low they couldn't read it, and his heart rate shot up to 220 (human max).

- Sam needed LifeFlight to Atlanta, but it was storming so bad they had to send the ambulance.

- We were told Sam had a 50-50 chance of surviving the hour trip to Atlanta via the ambulance.

- We were told if he survived, he would need ECMO (external lung), and may not be a candidate for life saving surgery.

- Chris drove 100 miles an hour in our car while I rode in the front of Sam's mobile cardiac ICU ambulance from Macon to Atlanta as the sun was rising through the clouds...I prayed the rosary the whole way, and had never felt so alone.

- The amazing doctors in Atlanta's Egelston hospital stabalized Sam in minutes, WITHOUT ECMO!

- Sam was alive, but comatose and on more IV drugs than I thought possible.

- They bumped all surgeries back so that Sam could be first on the caseload of the Chief of Cardiothoracic Surgeon.

One year ago TODAY:

- Chris and I, both literally sick from exhaustion and worry, gave our son one last kiss as they wheeled him through the operating room doors.

- We sat with both of our parents in a waiting room full of people who were waiting on their own miracles.

- Sam came through the operation, the Bi-directional Glenn, with no complications, and even came off the ventilator that same day.

- The first time we saw Sam, he was pink from head to toe...something I have decided only a heart family can appreciate the feeling of.

Today, our Sam is just like any other kid on the outside, with the exception of his scar.  On the inside, he is stable and healthy.  It is hard to believe he was so sick just a year ago.  Sam brought many many people throughout this country and even the world to God in prayer, and together with God we all got to see a miracle.  I can't thank everyone enough for the prayers and support we have received, even before Sam was born. 

I think it took me a while to 'bond' with Sam after he was born.  We were so scared about his heart and about his future that we didn't live in the 'now'.  If there is one thing Sam has taught me, it is that we only really have 'now'.  I had no idea what kind of gift I had been given in Sam until it was ALMOST taken away, and then given back to me!  The second they told us he only had a 50% chance, I knew I could not live a second without him.  And I can tell you that I cherish EVERY second with him...even the ones when he is cranky, crying, and throwing food off the table. 

Happy 1st Glenn-iversary Sam!  It is certainly a day we will never forget!

~Kathy

Bowling for Beads and Hunting for Eggs

Another busy weekend...

We drove to ATL for the 5th time in three weeks on Saturday.  We participated in a fundraiser for a program called Beads of Courage which is coming to the Sibley Heart Center (Sam's cardiologist/surgeon group).  The program gives hand made glass beads for each procedure/hospital stay that a child goes through.  The child/parent journal about each bead, and it is set up as a way for the child to claim an ownership over their medical achievements.  The fundraiser was at a SUPER nice bowling alley at Atlantic Station, a SUPER nice shopping center in DT ATL.  Sam met up with his heart friend, Matthew.  This photo of the two of them looks extremely similar to the last photo I have of the two of them...Matthew is being soooo good and Sam is being a total butt.  Fun was had by all, and I can't wait for Beads of Courage to start at Sibley!

Sunday was great, too.  Our neighborhood (which is relatively new) finally pulled together an active neighborhood association.  They had their first big event...an Easter egg hunt!  We got to see/meet a lot our neighbors and their kids.  Sam hung out with his friend James, who is just 4 days older than him!  We met a family who's 3 year old daughter had open heart surgery  at Egleston a year ago, and who's cardiologist is Sam's cardiologist!  Sam found a few eggs, ate a really messy cookie, and showed off his bike cart to his friends! 

Afterwards, Sam ate dinner and got a bath.  While I was running the water, I stripped Sam down in the bathroom.  He was kneeling by the bathtub and getting super excited to get in; I've never seen him jump up and down with excitement for a bath!  When I finally lifted his naked butt into the tub, I realized he had left a little puddle of pee on the rug by the tub.  Guess the excitement was just too great!

~Kathy

Cherry Blossoms and Coca Cola

We had a busy weekend.  Chris's sister Lydia and her boyfriend Mike came to visit.  Thanks to some Atlanta traffic, they got her a touch late for Sam, but we braved going out to eat anyway.  Naturally Sam nutted up in the restaurant, and threw up in a bread basket (a common occurance with Sam and restaurants).  He showed very little stranger anxiety though, so that's some good news!

Saturday I took Sam to get some portraits made.  We had a bad experience at this place last weekend, and ended up leaving after an hour of waiting.  BUT they tried to make up for it this time...no pushing us to buy more, took her time, and gave us 45$ worth of freebies.  Afterwards, we went to the Cherry Blossom Festival in downtown Macon.  We watched the Dixie Disc Dog Championships...always fun.  We saw some friends (yes, we do have friends in Macon now) and had a good time in the sun.

Today we drove up to Atlanta and went to the World of Coca Cola Museum.  Sam didn't get a nap, and was pretty much a butt the whole time.  He did like sampling cokes from around the world though.  We went to the Varsity, said goodbye to Lydia and Mike, and then drove to the Tanger Outlets for some shopping.  Sam got an adorable swim trunk/top, hat, and sunglass combo.  Needless to say, Sam went to bed early and all is well!

Keep praying for Emery.  She is having some pressure problems, chest tube drainage problems, and continues to have high antibodies.  She is awake and alert, which is good and bad...she wants to be held but her sweet family can't hold her much because of the chest tubes.  They are hoping for some resolution this week, and maybe to move to the step down unit.  I know most of you don't know this family, but it is important that this heart transplant be a success, not just for Emery, but for Sam.  Sam, too, will some day face a heart transplant if no other technology develops in the mean time.  Emery's success is Sam's success, as it is the success of all of these babies who need transplants. 

~Kathy

Poor Pinky's Finger

Sam had a bit of an accident last friday.  While at daycare, he got his 4th finger rocked on by one of the workers in the rocking chair.  They called me at work and told me he was calm and not crying anymore, but that his finger was 'really bruised' and his nail was probably going to come off.  BUT when I got to daycare, I couldn't even tell what finger it was...there was only just the slightest blue in the middle of the 4th fingers nail.  I told the lady I understand they have to report incidents to me, but to not worry too much about bruises with Sam.  He's on Asprin and he is going to bruise super easy, and I don't want them to make a big deal over it everytime it happens.  I called his Pediatrician anyway, and they said just to watch it and call if it looked worse.

Over the weekend the tip of Sam's finger slowly turned more blue.  Yesterday it got very red.  Today, the finger nail looks yellow-white, and there is a slight bit of fluid coming out from under the nail.  The daycare called me again just as I was getting off work to say they thought it looked more swollen this afternoon.  So I picked up Sam and headed to the pedi for an eval. 

I told the pedi what happened, and told him I was most concerned about a compromise to the circulation in the tip of the finger, since Sam's oxygen levels are already low.  He did a good investigation and said the circulation looked intact, but the nail bed is starting to get infected.  He prescribed an antibiotic.  But he said if the swelling and reddness did not go away in the next three days, that we may have to have it xrayed.  He said if it's broken, Sam may have to have it pinned.  Ugh.  But Sam is using it, and it doesn't seem to be bothering him so hopefully it's just an infection.  The pedi said Sam will be more prone to infections in scenarios like this because of his low blood oxygen.

I guess Sam was mad about having his finger busted at daycare.  He decided to get even.  I got a report that Sam bit another kids finger at daycare Monday.  Eye for an eye, right?

~Kathy

PS: Emery's pressures are high.  They are trying a new, rarely used technique to get rid of all antibodies to avoid rejection.  Please pray.

Same Old Same Old

Chris's sister and her family came in Thursday night on their way to move to their new house in Virginia.  Sam got to hang out with his cousins and did fairly well with the 'new' faces.  We didn't get a ton of hang out time though, because Chris flew to Chicago Thursday night for the weekend to see a concert with old friends.  His sister left Friday morning, which meant Sam and I had a weekend to ourselves...which we thoroughly enjoyed.  We woke up early Saturday and ran a 5K in Forsyth, GA, went shopping, ate lots of bad food together...it was nice.

We went to pick up Chris from the Atlanta airport today.  While we were there, we stopped by CHOA at Egleston and dropped off a little gift for Emery.  She is recovering from her heart transplant slowly but surely.  Chris drove around the block while I took the basket up to the CICU.  I just left the basket at the nurses station and let them take it to Emery and her parents...I didn't want to disturb precious healing time and precious bonding time!  But her newest update is that she is becoming more alert, and needing less pain meds.  She needs to perk up more to eat and get up her energy, but so far so good!

Being up in the CICU was oddly emotional.  I contained my emotions pretty well with Sam and his surgery last year.  But walking those halls today brought a rush of stuff back to me.  The thought of that huge CICU, full of little babies fighting for life...and the thought of my baby being in that line up last year...and the thought that he would be back there again someday...bleh.  It was an unexpected emotional experience.  That hospital is amazing though, and I am in awe of the miracles they work!

~Kathy

Emery Update

Emery is doing amazing!  She has her new heart and has been extubated.  She did have one antibody that has a potential for causing rejection so they have started a 5 day process of clensing her blood via plasmapheresis (something I have never heard of and am frankly amazed at).  They will run biopsies to check for rejection along the way.  But so far so good.  I am going to put together a little goody basket and run it up to her family on Sunday.  Keep up the prayers because they DO work, and so far they are working miracles!

~Kathy

Pray for Emery

Sam's CHOA heart friend Emery was placed on the transplant list yesterday because her heart was failing.  Less than 24 hours later...at 3 am this morning...they got the call that they had a matching donor for Emery!  I've never heard of a wait shorter than three months!  Needless to say, they are happy, shocked, and scared.  Please  please say prayers for Emery, her family, and her doctors as they will be going into surgery any minute. 

~Kathy

Three things...

1. I love my new job.  My part time pediatric physical therapy job is AMAZING.  This is what I was made to do.  I have a lot to learn, but so far there has not been one second where I have thought "do I HAVE to do this"...that was a frequent thought at my last job. 

2.  A dear friend who helped me through Sam's diagnosis when I was pregnant is now pregnant herself and is having a BOY!  She and her husband have been through more than anyone can imagine, and NO ONE deserves this sweet baby boy blessing more than them.  I can't remember the last time I was this freakin happy for someone!

3.  Sam is the cutest kid on the planet.  See evidence posted below.

~Kathy