Never a dull moment around here...
On Tuesday I got a call from the nurse practitioner who sets up everything for cardiac surgery. She gave me the low-down on next week. We need to be there at 10am on Monday for a fun day of pre-op stuff (x-rays, labs, EKG, etc.). We'll stay at the Ronald McDonald House that night. Then surgery on Tuesday. Followed by at least a 48-hour stay for IV antibiotics (since they are adding hardware into her body). So, if all goes perfectly, we're looking at coming home sometime Thursday.
There is a spring musical for Murphy's grade Thursday night. You know, it's one of those things that parents go to and take video, pictures and all that good stuff. So, I'm hoping we'll be home in time to make it to his event. Thankfully it's an evening one, so that buys us more time to get there.
Katie also told me that Harlie's surgery is scheduled with Dr. Jonas, the surgeon who's done all four of her heart surgeries. We just got lucky with his schedule. I don't think he normally does this - considering if all goes well, they won't have to open her up. But I am so glad because Katie reminded me that Harlie has some really significant scarring in/around her heart. So, if a lead needs to be reattached, he will have to get through all that scar tissue (which bleeds a lot) to find another suitable place. And he does know what's going on in there better than anyone. So, that makes me feel so much better.
At the end of our conversation she asked me if Harlie's had an fevers recently. Nope. She's good!
And when she got home from school a few hours later, Terri told me that she didn't tolerate her cap and that she had a runny nose all day.
So, I kept her home from school today. And after some thought, I'm keeping her home for the rest of the week. I want to give her every chance to recover as quickly as possible. And I see no reason to wear her energy down or continue to expose her to more germs while her immune system might already be weak.
Then today Katie called again. She said that Dr. Jonas and another surgeon who will be in on the case went over her studies last night and they need more information. I do remember Dr. Jonas talking to us about her scarring and how sometimes it can cause the heart to adhere (?) to the sternum. There needs to be enough room between the heart and sternum to cut the sternum safely. And right now, they can't see how much room she has. So, they need to do a CT scan.
So, now we need to be there at 8am on Monday, and she will be admitted. Then they will be able to get everything they need and possibly combine some things (like if she needs anesthesia for the CT scan, they can get blood and start an IV at the same time). So, hopefully that whole pre-op stuff will be easier than us running all over the hospital.
This also eliminates the need for the Ronald McDonald House, which makes my life easier. I can stay with her each night as the Heart and Kidney Unit has a full bathroom and couch for sleeping. And when she goes to the CICU (cardiac intensive care unit) they have space for parents to sleep there, too. It's a new unit with big rooms and I'm pretty excited to see it.
Of course, she has to be well for all of this to happen as scheduled. There are two main reasons why I don't want to reschedule.
1. It gives me some peace of mind that Dr. Jonas will be able to do it.
2. I don't want to wait any longer for this pacemaker. And the other option for a surgery date was at the end of March/beginning of April. Ugh. I just want this done.
So, my fingers are crossed that she'll bounce back very quickly. We do still have a few days, so I'm holding on to hope that she'll kick it very soon.
Okay, that's it for now. I'm falling asleep while typing this.
We would welcome all good vibes and prayers that this is just a little cold or allergies or something and that it won't prevent this surgery from happening.
Thank you so much!
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