Until then, patience...
Teddy is scheduled for testing Friday, May 17th. Assuming (hoping) his team will meet on Monday, so I am hopeful for at least some news early next week.
Until then, patience...
Yesterday we were planning on leaving home about 6pm to head to our hotel near the hospital. I was ready. (Well, I was still getting the house ready.)
Around 2:30, Teddy's mom posted on Facebook that some of his lab results came back looking bad, and they weren't sure if it'd be okay to go ahead with the transplant.
I spent the next hour repeating, "It'll all work out, it'll all work out," and trying to remind myself not to stress over something I can't control.
My sister was planning on picking the boys up at 3 to go to a hotel to go swimming and spend the night, so she came and I said goodbye to them, still crossing my fingers that we were still on.
At 3:30, I missed a call from my coordinator's office. I called right back, but got voicemail. So I sat and anxiously waited 11 minutes for her to call me back. My coordinator was on vacation, so it was a co-worker or supervisor, I don't remember. She told me that the transplant was cancelled. That's all she could really say, as my team is separate from Teddy's team, and if she did have any other information she could not share it with me as it was confidential.
I can't identify exactly what my emotions were initially, but as soon as I hung up I started bawling (ok, I was barely able to keep it together enough to tell her thank you and bye). I was just devastated.
I've been on an emotional....tornado. I keep wanting to say 'rollercoaster', but it's not really up and down, just around and around.
Although I wish it wasn't my first reaction, I spent the first hour feeling sorry for myself. I had everything ready. Plans were in place and my kids were already gone and my bags were packed and I was just READY. Physically and emotionally. I was finally feeling good about recovery, my classes were arranged around the surgery date, we (my doula business partners and I) don't have any clients due immediately... I like to plan things and be in control of things and I don't always do well with change.
So then I started trying to think of the bright side. There are some business marketing opportunities I could now take advantage of. I could get started on some packing (we are planning on moving this summer). I get to go to the gym tomorrow!
And then the guilt set in. What does this postponement mean for me? I get to go on with my daily life. We cancel the hotel, my kids come back home, things are normal. But what does it mean for Teddy? His labs are not looking good (and you can read the specifics about all that on his mom's blog), and they don't know why. This transplant that he NEEDS is put off, for who knows how long. He is going to have many more tests and medications and all this time his kidney is probably getting worse. I am stressed about not being able to control my schedule, but Sarah has to worry about her son's LIFE. I should not be complaining.
But I am stressed, and that's okay. I know, and I think about it every day - all day long - that what I am going through is a lot easier than what Teddy is going through. But it's still hard, and especially because I hope potential donors read this, I think it's important to acknowledge that.
Teddy will be getting more tests done next week, and they need to determine why his labs are getting worse before we can reschedule surgery. I have NO IDEA when that will be. No clue whatsoever. Hopefully next week we'll know more. And that up-in-the-air feeling is hard for me to deal with. I have businesses to run and my best friend is having her first baby this summer. I like to have a plan!
But I have not wavered on my decision to donate. I have committed myself to helping Teddy, and I still plan to do so. It doesn't matter when. I got to a place of feeling READY, and I will get there again. I felt good about our plan for the kids while I was away and while I was recovering, and we will have that plan in place again. We had a meal calendar filled out, and people will sign up again (I was really looking forward to all the yummy food!).
And I will keep telling myself, "It'll all work out...It'll all work out..."
I had an appointment at the hospital this morning, to do bloodwork and go over with my coordinator everything to expect while I'm in the hospital, and met with my surgeon.
Thursday morning I'll check in at 5:30am (unless they call me tomorrow and tell me otherwise), and I should be in the OR by 7:15. It will take them about an hour to get me ready, so the actual surgery probably won't start until 8:00. The surgery should last 4-5 hours. They are taking my left kidney, so I'll be propped on my right side. I should have four small incisions on my side and belly, which is where they insert the laparoscopic tools. When they are told by Teddy's team that he is ready, they will finish freeing my kidney and remove it through my abdomen; I will have a horizontal incision about 3 inches wide low on my pelvis. Inside that incision, they will 'clear' my abdominal muscles and make a 4-5 inch vertical incision. The surgeon will reach his hand into my abdomen and pull out the kidney.
Then they'll flush the kidney and send it next door for Teddy! The doc told me he'd take a picture if he was reminded.
I'm planning on asking for anti-nausea medication to go along with my narcotics, as I don't think I've ever taken a narcotic without getting sick to my stomach. I'll have a medication pump at first, and will move to oral pain meds when I'm ready. I'm really hoping to switch to non-narcotics quickly, but will take them if needed.
I'll be encouraged to sit up and walk a bit as soon as I'm feeling ready. My catheter will come out Friday morning (although if I am walking around by Thursday evening I may ask for that to come out sooner). I will hopefully be moving from liquids to food in the first 24 hours.
They have told me most people go home Sunday, but sometimes Saturday. I asked what I need to be doing in order to be discharged, and they said just to have my pain under control and be able to keep liquids down, so I am crossing my fingers for a Saturday discharge. I'll be much more comfortable at home I think.
I talked to my surgeon more in depth about recovery. He said that he is strict on no lifting, pulling, or pushing more than 8 pounds in the first six weeks; ideally it'd be three months. Also, no abdominal work. But, anything else I can do when it feels okay. Walking, jogging, biking, any aerobic exercise that doesn't include lifting weight or directed ab work is fine. No baths or pools until after my follow-up on the 21st.
Tomorrow I'll have a good breakfast before 7, then the clear liquid diet starts.
Three days til surgery - well, even less than that. I'm feeling a little overwhelmed with the logistics. Having all the laundry in the house done, the house picked up (so our wonderful cleaning lady can come while we're gone!), the boys' clothes packed for five days and four nights, getting lodging set up for my husband, squeezing in an oil change, paying bills, having enough groceries in the house so we don't need to make a trip when we get home but not so much that it'll go bad when we're gone, getting to the gym, kids to and from school, a special Mother's Day celebration at school....All the little things that if I took them one at a time, it wouldn't be so bad, but thinking of it all at once just seems like a lot.
Getting my hospital bag packed - for potential donors that may be reading, here's my list so far:
camera & cord
phone & charger
pads (yeah - good timing.)
big soft towel
tanks (to wear under the belly binder - see below)
belly binder (I have a lot of friends and clients that find belly binders useful during the postpartum period, especially after a cesarean - They help support the abdomen, decrease gas pain, and just 'hold your insides' nicely.)
envelope for keeping all our receipts handy (for reimbursement)
Beginning 7am Wednesday I'm on a clear-liquids-only diet, so I've stocked up on stuff for that, and I am expecting to be hungry and grumpy Wednesday evening. Sorry, hubby.
Things for home:
body pillow (still need to buy or borrow one)
placenta pills (hey, they worked great postpartum, and I have all the extras in my deep freeze!)
castor oil for incision/scar care
lots of great friends and family to help!
Tomorrow (Tuesday) morning I head to the hospital for some labwork and a pre-op meeting with my coordinator, during which we'll go over everything to expect from the moment I check in Thursday until I am discharged. Also a short meeting with the surgeon. Not really looking forward to the two-hour-each-way drive, but oh well.
Wednesday the kids will go with my sister and my husband and I will head out of town, stay at a hotel, and check in at the hospital at 5am Thursday.