Thursday, August 22, 2013

Day 36 & 37: PDA ligation (closed heart surgery) and a new nurse.

Written August 22, 2012 10:57am
PDA ligation
J on the day of his PDA (heart) surgery
J's surgery is over and went well.  The next two days will be rough for him, so prayers for his bounce-back post-surgery are appreciated.
We were grateful to be able to share the morning with a family whose child underwent the same surgery just an hour or so before J (with the same doctor). Sharing this sad/scary/hopeful/breath-taking/tummy-knotting morning with this family was very meaningful.  We were able to talk together, pray together, and was grateful to know that I was not the only one responding the way I did to all that my little one was experiencing. 
I'll be staying in the hospital for the afternoon to get regular updates on J's care (he won't know I'm here, but I can't go home with so much going on with him).  Steve will be doing work from home as Kimia naps.
Thank you for all your prayers.

Written August 23, 2012 7:45am
J had a rough night last night. At 10 they gave him a chest tube for a collapsed lung. After that he wasn't doing well and the tube wasn't releasing air the way it was supposed to, so they took out the tube and were able to get him stable again, but they had to fight through the evening to get him there.

They are analyzing a new set of xrays right now to look at that left lung. We were warned that this might happen post surgery but were hoping it would not happen.

This morning neither Steve nor I can get in to see him, and it hurts this heart sooooo much. The nurse from yesterday is watching him again today, and yesterday was her first day working with him. I have a difficult time communicating with her. All this makes this distance from J even harder to swallow.

(Aug 22, 2013) The care page post above got people praying. Lots of people praying again. Lots of people who steadied themselves for the next update as it came, nervous about what it might contain.

I was trying to figure out why we couldn't see him the morning of a year ago, right after surgery and all that. How hard. How could he not be there? How could I not be there? Then I remembered. Steve was at the fall conference for work. The same conference that we both attended this morning. J even crashed the outdoor staff lunch today afterward. Both our girls are in school, so Steve brought him along in a stroller.  No one seemed to mind. Oh, the difference a year can make.

A year ago I was still on medical leave for another week, and while Ella was in school, Mimi needed me at home to watch her. There was no way she could go into the hospital with me when Jonathan was so sick. Steve was able to see J as soon as his work obligations were over, so it wasn't like he went all day without being there. Just the morning. But being stuck at home and feeling helpless was hard.  It was worse because Jonathan had been paired with a nurse that I not only didn't understand, but that intimidated me.

The nurse had spoken harshly with me the night before - just a few hours after J's surgery. I'd walked into Jonathan's area with another NICU mom who was my friend. The nurse thought I was bringing in an outside visitor and outside visitors were strictly prohibited during shift changes. We'd both been in the NICU all day and had just been in a break room eating dinner.  We'd lost track of time. Concern for my son was more important to me than the time of the day. I wasn't even aware that it WAS shift change time. Her sharp bark "you're not allowed in here now" made me scared. Was something wrong with my son?  Had things turned for the worse? I wanted to ask more questions, but with my friend at hand, I mumbled something about how maybe we ought to go to the hallway and we sharply retreated.  For the next three minutes we stood in the hallway and I worried for Jonathan. Then I caught sight of a nearby clock and realized what we had done and what the nurse had thought. 

And now that same nurse was paired with Jonathan for a second day.  I wasn't sure she knew Jonathan well enough to read him well, and I felt so intimidated by her that I didn't feel I could question her or ask any real questions about him over the phone. She'd get impatient with me or think me stupid or overreactive. I was sure of it. I could see it all in the sharp look she'd given me the night before. That was hard.  Why did she have to watch him on this, his sickest of days?

I figured out later she'd been paired with him because she had more experience, because she was better at working with the sickest of kids. But no one explained that to me at the time, so all I knew was that the nurses who most cared for him, the ones I was most comfortable with, they were no longer working with him.  And he was declining. I was enough scared of the nurse that even though Steve offered to watch Mimi so I could go in for a time, I sent Steve in to be with Jonathan instead. Steve didn't mind the nurse. And I didn't mind watching Mimi so much once I knew that Steve was in the hospital, that ONE of us was with the little guy.

This is what he wrote that afternoon:
Written August 23, 2012 2:42pm by Steve
Here are some things I heard people say in Jonathan's room today, with some translation.  They should give you some idea of how he is doing.

"With so many different treatment changes, it is hard to nail down cause and effect."  Translation: something is working, it might be the new gas we have him breathing, it might be the medicine, it might be the tube that is no longer in his chest, we are not sure what it was, but we are not arguing.

"That is a fantastic gas."  Translation: good breathing Jonathan!

"That is definitely a weanable gas." Translation: they got to turn one of the knobs on the noisy machine so that it is giving Jonathan less pressure - movement in the right direction.

"He is still pretty touchy."  Translation: if you touch him, he won't breathe very well.  Don't touch him much.  He is probably still pretty uncomfortable from the surgery.

"Have you gotten a chance to scrub in yet?"  Translation: Dad forgot to take of his wedding band, and the nurse didn't like it.

P.S. The difficult nurse?  It took another two to three months, as we didn't have her very often, but she grew on me.  By the end I understood her to be sternly efficient and it was those strengths -- the need to abide by rules and have the child's safety as her primary concern -- those were the things that made her a good nurse.  She was one of a very few who were there when we visited on Jonathan's first birthday, and while she still had a bit of a crusty exterior, she was pleasant and warm underneath it all. She came out and chatted with us, and even gave Jonathan a bit of a smile.  He was cranky and didn't smile back. Not because he's a cranky kid, but because he was having a bit of a hard day. I guess we all have hard days, don't we?

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