April 24th:
Every morning for the last 5 days we had called to see if we could begin treatment....on April 24th, as I was driving to the office from a meeting, I got a call from Dr Leber saying. "Today's the day...the admission team will call you when a bed is ready. It could be 10 minutes or 4 hours." Back to waiting, but this time with excitement. I called Taylor to let him know (I already had Ollie's bags and mine packed...or so I thought). My boss had chosen to honor me and my friend Lillian by taking us to the Canton Chamber's employee appreciation luncheon that same day. It couldn't have been better timed as I really could not have concentrated very well on customer's needs and wouldn't have wanted to be wrapped up in a long interaction when we got the call. Which, happened to come moments before lunch was served. I took a breath and tried to eat a few bites after I called Taylor....then headed home, in a SNOW STORM...michigan. yuck.
I got home, did a quick change and we loaded up. It was the first time we've ever checked into the hospital without starting in the ER. It was a little strange, but nice not to be in a rush. We were greeted on the 12th floor by one of our favorite hosts, Lynn. She showed us to our new room, 2 doors down from the last one. Oliver wanted to start walking the halls immediately...barely letting us settle in. I hadn't packed much, we were under the impression we'd be there for 24 hours, 3 injections. First one given by the nurse then one each by Taylor and I before discharging us. Dr Singh stopped by with only 2 other care team members (a much smaller version of the posse). She sat right down on the bed and in her very laid back manner, introduced herself. After a few minutes of getting to know us, she shared her plan. We were startled, but thrilled, to find out the plan was not only to start ACTH, but also to initiate the IVIg and Rituxan infusions as well. They were also working with Peds surgery to coordinate placing Oliver's port during our stay. We would be inpatient until at least Friday, maybe Saturday.
I called my mom and then sent her a list of all the other things we would need.....the list was long. 24 hours turned into 54. Along with my laundry list of essentials, Nana, Papa and Jay and Michele Lambert stopped by with pizza for dinner. They didn't stay long since Oliver wasn't feeling too social:) and was sound asleep! He got his first ACTH injection that night and IVIg was started around 3 am. The IV was in most of the "night" and lots of vitals were taken. I've very grateful that the nurses don't adhere to the rule that says only the child should be in the bed...Oliver slept next to me, instead of ON me, but I don't think he would have stayed there by himself.
The next day, Oliver woke up pretty cheerful...
In the wee hours of the morning, the surgery team came in to say Oliver would be on the schedule for around 11:30 am. He couldn't eat or drink until after the port placement was completed. I fell back asleep after he left and prayed Oliver would sleep late....that was stymied by the 7 am fire alarm test....
Somehow we made it through to the prep without any meltdowns. We gave the anesthesia team Oliver's list of no-no sedatives, repeatedly. We asked what the plan was, agreed, and they took him in. We took our pager and went back to the room to eat lunch and nap. It wasn't too long before we were back down talking to the surgeon (who always wears the same white shoes as he started wearing when he began operating in the Navy over 30 years ago). We asked lots of questions about the port, how it works and if there were any special instructions. I was worried that he wouldn't be comfortable since his favorite position was laying chest to chest. The doctor said he shouldn't be bothered by it, other than some bruising from placement it would be a non-issue. Hard to believe...(now, I know he was right:).
After he woke up, we took a very cranky Oliver back to his room. After a short while, we began to wonder if he was in pain...he was SO grouchy. As it turns out, they gave him a small dose of morphine , a narcotic. The entire category is on Oliver's no-no list. Lesson learned. All of the drugs (not just the ones we thought applied to a given situation) are now on his permanent record...
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