8/3: Less Than One Week Left
Leo woke-up last night at about 2am and decided to work-out his lungs by yelling a bit. It had something to do with my changing his incredibly soaked diaper and pajamas. He eventually relaxed and fell asleep until about 5am. That's when he seems to have the most energy, so he went for a walk in the stroller with Granpa to ensure all the local construction sites were excavating and bulldozing correctly. Unfortunately they weren't even working, but it was still a successful outing since Leo came back with a big, big grin.
Today was a good day at The Clinic, albeit a very long one. Good because the blood culture remained negative -- 48 hours down 24 to go. Starting tomorrow I will no longer need to prepare the bags there; they now trust my bag preparation and pump programming skills. Instead I'll be training on a "gravity IV" thingie in case the pump breaks or something. The day was long because I decided The Clinic should ship our supplies home before Leo gets discharged. Usually people take all this stuff with them (and there's a lot), but I figured instead of worrying about hurrying to get home, unpacking, finding everything, preparing the bags, programming the pump, and plugging-in Leo, Marina can ensure everything is there and in good condition when it arrives and prepare it for Leo's arrival at home. Just one less thing to worry about. This was a long and somewhat inefficient process.
We first needed an order from Dr. Weaver, who was ok with this idea. While he was writing that order nurse Louise took us to see Margaret, who takes care of the supplies. Margaret told us what we would need, how to order it in the future, etc. She had some small pretzels (yes, with salt) and Leo just couldn't resist, so he had 2 or 3 of them. She gave us 2 forms that we had to take to Rachel, in finance, who was taking over for Debbie, who is on vacation. Rachel's from the insurance department, but was helpful and even though she left the office a few times, didn't take that long. One of the 2 forms was initialed and we now had to take these forms to the shipping department on the first floor. To make this a little more efficient, and because Leo was getting more aggravated as he got more hungry, we decided I'd take him to the car while Granpa went to shipping. The shipping person tried to tell Granpa how things worked around there -- that he wouldn't ship the first batch (i.e. we had to take it with us). That was his first and last mistake, since the Doctor's orders were clear, meaning the supplies would be shipped to us, without questions. I guess the person in shipping was at least bright enough to quickly understand with whom he was dealing and shut-up. I'll have Granpa get the tracking number from him tomorrow. :) We left the building about an hour after this process started, with Leo absolutely ravenous. This is the one day we didn't bring food with us, of course...
The sure-fire way to feed the hunger and tame the beast is with a fresh mozarella pizza from Whole Foods, which we all enjoyed. We came back and even though he fought and fought, the sleep won, at least for a short while. I napped with Leo, while Granpa slaved away in the kitchen, and woke-up to being smacked, clawed, punched, and periodically rubbed, with lots of giggling in the background! Leo was generally in a very good, fighting mood today, which are all positive signs. His constipation seems to have gone, which probably also helps, and we understand the medication-thirst-sleep routine a little better. He even told us when it was time to take the decadron!
The 9 year-old girl, from the Italian family we met yesterday, is here for the same condition as Leo, pontine glioma. She is the third child with pontine glioma currently at The Clinic, with 1 more possibly on the way. Their English-speaking relative stopped by this afternoon and Granpa drove them shopping, since they've been calling cabs to get around. Too bad we have a fairly small car and there's 3 of us and 4 of them; otherwise, we could at least take them to The Clinic and back with us.
So it looks like we're beginning to wrap-up our trip. There's still a very long way to go, but the end is now in sight.
Today was a good day at The Clinic, albeit a very long one. Good because the blood culture remained negative -- 48 hours down 24 to go. Starting tomorrow I will no longer need to prepare the bags there; they now trust my bag preparation and pump programming skills. Instead I'll be training on a "gravity IV" thingie in case the pump breaks or something. The day was long because I decided The Clinic should ship our supplies home before Leo gets discharged. Usually people take all this stuff with them (and there's a lot), but I figured instead of worrying about hurrying to get home, unpacking, finding everything, preparing the bags, programming the pump, and plugging-in Leo, Marina can ensure everything is there and in good condition when it arrives and prepare it for Leo's arrival at home. Just one less thing to worry about. This was a long and somewhat inefficient process.
We first needed an order from Dr. Weaver, who was ok with this idea. While he was writing that order nurse Louise took us to see Margaret, who takes care of the supplies. Margaret told us what we would need, how to order it in the future, etc. She had some small pretzels (yes, with salt) and Leo just couldn't resist, so he had 2 or 3 of them. She gave us 2 forms that we had to take to Rachel, in finance, who was taking over for Debbie, who is on vacation. Rachel's from the insurance department, but was helpful and even though she left the office a few times, didn't take that long. One of the 2 forms was initialed and we now had to take these forms to the shipping department on the first floor. To make this a little more efficient, and because Leo was getting more aggravated as he got more hungry, we decided I'd take him to the car while Granpa went to shipping. The shipping person tried to tell Granpa how things worked around there -- that he wouldn't ship the first batch (i.e. we had to take it with us). That was his first and last mistake, since the Doctor's orders were clear, meaning the supplies would be shipped to us, without questions. I guess the person in shipping was at least bright enough to quickly understand with whom he was dealing and shut-up. I'll have Granpa get the tracking number from him tomorrow. :) We left the building about an hour after this process started, with Leo absolutely ravenous. This is the one day we didn't bring food with us, of course...
The sure-fire way to feed the hunger and tame the beast is with a fresh mozarella pizza from Whole Foods, which we all enjoyed. We came back and even though he fought and fought, the sleep won, at least for a short while. I napped with Leo, while Granpa slaved away in the kitchen, and woke-up to being smacked, clawed, punched, and periodically rubbed, with lots of giggling in the background! Leo was generally in a very good, fighting mood today, which are all positive signs. His constipation seems to have gone, which probably also helps, and we understand the medication-thirst-sleep routine a little better. He even told us when it was time to take the decadron!
The 9 year-old girl, from the Italian family we met yesterday, is here for the same condition as Leo, pontine glioma. She is the third child with pontine glioma currently at The Clinic, with 1 more possibly on the way. Their English-speaking relative stopped by this afternoon and Granpa drove them shopping, since they've been calling cabs to get around. Too bad we have a fairly small car and there's 3 of us and 4 of them; otherwise, we could at least take them to The Clinic and back with us.
So it looks like we're beginning to wrap-up our trip. There's still a very long way to go, but the end is now in sight.
posted by Yury at 8:10 PM
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