The bulk of yesterday was spent in Jaden's surgery. I was very nervous because it took much longer than anticipated, but everything worked out and Jaden is recovering well. He has some soreness at the insertion site and really complained about his throat hurting yesterday (they usually intubate him because of all his previous breathing issues), but things seem to be better today. He didn't even ask for Tylenol today. It's bizarre not seeing those three lines dangling from his chest and having to keep them out of Gia's reach. Jaden is supposed to keep the dressing on it for 3-5 days and then I can remove it. Dr. Paddock told us that since Jaden is still on steroids (hydrocortisone), the normal healing time will be prolonged and it will take several weeks instead of the usual 7-10 days. I'm just looking forward to giving him a shower without having to tape and seal his lines and dressing. It will be so much easier! Jaden is not supposed to get the area wet for several days, so I'm holding off on his shower until we get home (just to be extra safe). I'm sure by then, he'll be ready for a long hot shower! With the external lines gone, Jaden can now shower daily. This seems inconsequential, but it's a major milestone for him. I'm thrilled that we've crossed off yet another hurdle between us and going home--we're now one step closer!
Today was crazy in getting things packed and cleaned up. Tomorrow will be spent in clinic and Jaden also is scheduled for yet another round of Pulmonary Function Testing in the morning. I'm convinced there is some technical difficulty in administering these tests. If you look at the results, you'd think Jaden was having all kinds of lung issues right now. Yet he seems to be doing better than ever. When they check his pulse ox in clinic, he's usually at 97% or higher and I don't see any visible issues. Hopefully Dr. Majure (the pulmonologist at Duke) will be able to sort through all the scans and tests results and come up with a treatment plan for Jaden before we leave Durham.
I have come up with a whole list of questions for Dr. Prasad. It contains everything from "how much longer does Jaden have to wear his mask?" to "when/how many visitors can Jaden have at one time?" to protocols for emergencies. I'm so so nervous bringing Jaden home but know we need to take this step. We can't be in Duke's cocoon forever, can we? We can't wait to see everyone when we get home, but honestly I'm so nervous, I'll probably be ultra careful when we first get home. So, as much as we want to reconnect with each of you, we'll probably be hibernating for a while. Given this past week with our gang together, I'm anticipating some readjustment time will be needed as we all regroup as a family unit. I also know it's still raining in San Ramon and flu season is not quite over. I will be ultra protective of Jaden during this time. So, please don't take offense. As soon as he adjusts to being home again and the weather (and therefore threat of viruses) clears, we will be getting in touch with all of you! Really can't wait! We've just come too far and overcome too many obstacles to be lax at this point.
That's it for now. I'll update tomorrow after our final (sniff! sniff!) clinic visit at Duke with our favorite primary doctor. Then it's four days of just me and Jaden until we're finally home! I'm getting goose bumps just thinking about it! Still praying everything is on track...
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