Found it!

Zeke found his smile again!  And... ALL of us are home!!!!  Zeke came home Thursday afternoon!  He is on 3/4 liter oxygen and is still battling pneumonia, but growing stronger little by little.  We have follow up appointments with several Dr's, the most important one being the pulmonary doc.  In a few weeks after Zeke is recovered from the surgery he has to have a procedure they call a "lung wash".  They put him under general anesthesia and through his mouth go into his lungs and get a sample of what is in there to try to figure out if he is aspirating into his lungs, or what is causing the trouble.  This is an outpatient procedure, thank goodness.  Then he also has to have a test (overnight in the hospital) where a scope is put down his throat into his lower esophagus that stays there for 24 hours to measure the amount of reflux, pressure, and how high it is going.  The GI & lung Dr's work very closely because a lot of the time gastric and lung problems are intertwined, one problem causes another or one problem aggravates another.  Anyway... we have a lot ahead of us!
  The other brothers are thrilled to have Zeke home!  We are all very tired and trying to catch up on life!
  I will post again soon about other upcoming events... stay tuned! (No, I'm not pregnant, in case you thought that was the event.)

Until then, lots of love to you from,

The Brothers Buckley!!

Oh, how I wish he could be better!

So sorry for not updating during this time about Zeke.  Here is the "nutshell" version of how this roller coaster got to be such a scary & bumpy.
- Wednesday 7am- we check into Presbyterian St. Luke's children's hospital for a simple catheter procedure to close the large hole in Ezekiel's heart.  (Keep in mind he is on the mend from pneumonia)

-Wednesday 9:30ish all went well & we go to the recovery area.
- Wednesday 11am- We go to a room on the pediatric floor for observation
- Wednesday 4:30 Dr. Miller comes in to do an x-ray & an Echo to make sure the device that was used to close the hole is still in place, then we should be able to go home!
-Wednesday 4:35 "I have bad news" Dr. Miller says "it seems the device has moved and is now lodged in a different part if the heart"...uhhh what???? So, I call Mike & have the Dr ax plain everything to him over the phone.  "I'm going to go talk to the surgeons now and see what time we can get him into the OR".  "Okay" I said.  At this point I am thinking I'm going to wake up any second,
this can't be real.

I start frantically making phone calls to try and make sure the 3 other boys have someone to be there.  I don't know what to say, or how to act or what to feel.  Meanwhile the nurse comes in and starts to get Zeke ready to go to the Pediatric ICU. 
-Wednesday 6:30pm we were checked into PICU #7
-Wednesday 8:30pm we are told the surgeons are still working on another case and as soon as they are done they will start Zeke's open heart surgery.  The PA came in and explained to us exactly what the surgery would entail, most of which I did not want to know.
-Wednesday 11:30pm My baby boy is wheeled away...
-Thursday 1am- The PA comes to give me an update and continues to do so about every hour.  All is going well.
-Thursday 3:30am Here comes my sweet Zeke, hooked up to so many things and on a ventilator. We get to say hello, and give him a kiss.  Then we have to go to the waiting room while they stabilize him and get him settled in.
-Thursday 3:30pm Zeke is extubated and doing okay.
-Thursday evening we try feeding him and he takes a little.
-Friday morning Zeke is very fussy and uncomfortable.  He is coughing a lot which really hurts his little chest. 
-Friday all day he is fussy restless and throwing up.
-Saturday- same status, except now he is throwing up blood!  The Dr said this can happen and it's from a number of things like being intubated 3 times (the 1st one he knocked out) having the NG tube and being on the heart & lung bypass machine.  He assures me this is nothing to be alarmed about.
At this point I know something is wrong.  He should be getting better and he's getting worse.  He is on 2 liters of oxygen, which is really odd considering he was on nothing prior to this and he is still very unhappy.
-Sunday Zeke is slightly less fussy and is transferred to the ped's floor. 
  We have had a pulmonologist and gasto Dr's looking at him to try and figure out what's going on.  Maybe he is aspirating into his lungs, we don't know at this point.  I am getting very frustrated and just want to have him be better.  
-Monday - Things are exactly the same except there was a "swallow" test done to see if he was aspirating while eating.  No, he's not, the test was totally normal. 
There are several things on the "bright" side. His heart is fixed and there are no more complications from a heart standpoint. He has gained a whole pound since we have been here which is amazing! The room and area we are in is extremely nice and the staff could not be better, we love them!
So, that's where things stand now, 2 liters of oxygen and quite fussy. C'mon lungs, don't fail us now!!
It's so frustrating that we came in here to fix his heart and now he is so much sicker than before.

 The plan at this point is to see if tonight his oxygen needs go down, and if not a tube will be put in his nose past the stomach into the intestine & he will be fed that way for a few days & see if that helps.  If not, a whole battery of tests will have to be done. 
  For now we are again just waiting & trying to soothe the little angel.

EKG before surgery

Dr's looking at the echo just before surgery

 All the tubes & stuff

My tiny boy

When he just came back from surgery

No one should have to see their baby like this...

Incesion is looking good, but Zeke is not happy

Zeke in his new bed on the peds floor

Much love to you from,

The Brothers Buckley



 

Mr. Fix-it

Today is the day!  The tiny heart of my tiny baby is fixed!!!  Dr. Miller is our Mr. Fix-it and to him we are so very grateful!!  Zeke did well and will be recovering comfortably soon.  We hope to be able to go home today & be in the comfort of home for him to rest (and me too)!  I'll post again when I know more.  Thanks for checking in on the MIGHTY ZEKE!!
xoxo

"Patch" Buckley - the heart of Ezekiel!

First we have to say...
WELCOME MEAGAN ELIZABETH!!!  The Brothers are officially BIG cousins.  We love you Meagan, Aunt Mary & Uncle Mike, congratulations!!!

The Brothers are looking very forward to Halloween & can't wait to beg our neighbors for some good "loot"!  Before that happens however, we are going to get the littlest Buckley heart patched!  Ezekiel will be having a catheter procedure on the 20th of October to patch the large hole in his heart.  Hopefully this will solve a number of issues for him.  He is currently on the heels of his second bout with pneumonia.  This one thankfully did not result in any hospital stays.  Zeke has "wet" lungs as a result of the heart defect so these infections happen easily, this should be resolved with the surgery.  His growth is also affected by his heart and hopefully he will start to catch up to his "big" brother!  Recently dubbed "two ton Tony", Matthew weighed in at 11 lb 8 oz and the mighty Zeke weighed in at 8 lb 14 oz at their 5 month weight check (Oct. 5th).
  Matthew is doing sooooo well!  Now cooing, squealing, and babbling to anyone & everyone (hummmm, I wonder where he gets that????) even if no one is listening!  He has also discovered that he can grab!  WOW, what an awesome discovery!
  Danny is...well...he's three.  So he is either super cute or super cranky.  I guess we should call him super Danny!  When Nana told him "you have a temper" his response was "where?" always saying something funny!  He and Gabe and daddy arrived home from the store and I asked him "were you a gentleman in the store?" he gave a very matter of fact answer "nope, a bwat"! (Brat) Well at least he is honest!
  Gabe is also either very good or very much in trouble.  His latest is whispering to Danny what to do & getting him in trouble.  The one I overheard yesterday was "hey Danny...throw your carrots across the table!" of course the little brother does what the leader says!  I have realized that I am raising a barrel of monkeys!!
 They are in fact very awesome & amazing boys & I could not be more grateful to have the honor of raising such beautiful boys, along side of the most beautiful man I have ever known!  Not a day goes by (no matter how hard) that I don't realize just how wonderful this life is!

Much love to you & your families,

The Brothers Buckley!  xoxo

Boxer Zeke

Danny feeding "two ton"

Tio Beto baptizing Ezekiel! God-mama Val & Godfather Scott

 Tio Beto baptizing Matthew! God-mama Rachel & Godfather Mark!

Yeay!

Tio, Mama & Matthew

the big beautiful cake!! (from Nana!)

God-mama Rachel &Matthew

 bouncy time

shirtless Matthew showin' a little shoulder

ZEKE!!!!