Elijah's Heart Journey: Post-Op Day 2

Wednesday, July 18, 2012

Post-Op Day 2

I wish I had better news to report. Sometimes I feel like such a negative person when I start talking about our days here at CHLA. On the positive side, he did have his breathing tube taken out yesterday. He was incredibly upset with the tube in and was getting increasingly agitated. He was upset for hours. They couldn't give him any real pain medication because they were afraid it would reduce his ability to breathe if they took him off the breathing tube. This left him in pain, which caused him to breathe even faster. It was a rough day. In the middle of the night last night, they ended up putting him back on high flow oxygen because he was working so hard to breathe. This morning they increased the oxygen even more because he was still retracting.

During rounds this morning, the doctors discussed possible reasons for his continued struggle to breathe. They really aren't sure what is going on. It could be that he needs to learn how to breathe with his diaphragm being tacked down. They ordered another echo and a stomach xray. He was coughing up blood this morning. They are fairly certain the blood is from changing the NG tube yesterday and possibly the breathing tube, but they want to confirm this. They also want to make sure the issue isn't related to his heart.

This afternoon, he spiked a fever and has continued to have a fever since. They started him on an antibiotic as well as tylenol and ordered blood cultures. It's possible that this is the cause for his breathing issues as well. No one knows why he is struggling. It has become very, very clear to me that the hardest part of being a parent isn't the lack of sleep or the crying or the neediness, it's watching your child truly be in pain, pain that you have never known and may never know, and you are absolutely powerless to stop it.

2 comments:

MPJuly 18, 2012 at 7:10 PM
I can only imagine how difficult it must be to see your baby in pain. I hope they figure out what is going on soon and his pain stops. Thinking all good things for you guys.
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UnknownJuly 19, 2012 at 11:14 PM
Hi fellow heart mama! What beautiful children you have! I am mother to Grace, 3 1/2, HLHS, and went through very similar circumstances as little Elijah. It is so hard to see them go through these surgeries. Grace had a paralyzed diaphram after her Norwood. They plicated it 3 times (which is no not normal, but ended up being the case for Grace). She had the low sats and elevated pulmonary pressures. It took a while for her sats to stabalize and for her to recover. Part of her problem was the plication kept coming loose, causing her left lung to partially collapse or be compressed from the diaphram. They also ended up putting her on Sildenafil (Viagra), which seemed to help. She is still on it today. I am available if you need to talk, vent or find out more about what Grace went through. Maybe it can spark some dialogue with your doctors so they can better help Elijah. Or just be a sounding board from one heart mama to another, one that can relate.
You can see Grace's journey at www.heartofgrace.net
Today, Grace is an active, outgoing, happy little girl. You'd never know all she went through that first year. Please send me a message to www.savinggrace@heartofgrace.net if you want to talk. We live in San Diego. I believe you are in LA. Amy Bennett is the one who asked me to reach out to you, as she knows we have a similar journey with our heart babes. We will keep Elijah and your family in prayer. May the Lord give you peace that passes all understanding and the strength for each day. Heart hugs to you mama.
God bless you,
Sherry
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The Chosen Mothers by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side." "And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."