- 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
Oh my goodness, my heart goes out to that poor baby and to your family who has been through so much.
ReplyDeleteSis, I just don't know what to say. You've a get out of purgatory free card for yourself and 20 others. And your boys will likely all be doctors as hospitals are familiar surroundings You must be united to Mary's heart in a unique way. Know I pray for you all daily, thanks so much for taking the time to update us, I hope this is an easier medium then telling and retelling the details to individuals. Love ya, Thomas
ReplyDeleteThank you for the update and the pictures! I saw some of them on Mike's phone (Thursday), but they were much smaller. Know that you are all loved, and you can ask any of us for help... we're here for you! thank you for the update. Hugs to you and your whole lot of Buckleys. MUAH!
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