Monthly Archives: June 2010

finding normal

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This picture was from before the NG tube, but it’s actually been almost 2 weeks since it was inserted and we spent the night in the hospital. I’m getting a hang of it, although it hasn’t been easy. So much of our focus lately has been getting Diego to get and take enough calories in, but after some trial and error it seems like he is starting to put some weight back on.
He is on an appetite stimulant which doesn’t appear to be working so well, but he is now getting from 500-800 calories overnight through his NG so that is really helping. Since coming home from the hospital I have regularly had to take him to the potty and ask him to pee, lest his bladder would stop working all together. From a mild protest to screaming bloody murder I have been able to get him to do it, round the clock. The worst has been in the wee hours when I have had to wake him up. Getting 500-800 ml overnight meant that I had to be vigilant about it. But just today it seems like his bladder is starting to work again. Strange to be excited about your kid peeing his pants, but considering the alternative I’m super happy. I just hope that the meds won’t cause him permanent damage.

Our doctor decided to skip chemo last week (vincristine) because of his problems urinating. When I reported that he started to go on his own, our doctor said that they would start up again this week. Radiation was scheduled to start this week, but with chemo being skipped a week, I’m not sure if that will be put off as well.

Day by day Diego seems to be recovering emotionally from his hospital ordeal. He needs me much less at bedtime, and seems to be taking some pride in knowing about his broviac and NG tube. He told me the other day that he liked the NG tube, when I asked him why he said because he wasn’t in the hospital. (I have explained to him that if he wants to get better at home instead of the hospital, that we need to do certain things like take medication, change the dressing on the broviac and use the NG.)

We try to get out every morning for a walk (in the stroller) or an activity. Close to home it’s walking to the bakery or a cafĂ©, further away it’s the zoo or taking the ferry to San Francisco. Getting out of the house to explore has really helped him get out of the hospital mentality of just sitting at home and vegging out. I also use any time he spends watching the TV to give him added nutrition via the NG.

While it’s unclear whether radiation will start next week, chemo will. No doubt that some of Diego’s turn around has something to do with having a little break. Anyway, it’s amazing how our moods and outlook change depending on how Diego is feeling. As I’ve been telling people, when Diego’s happy, everybody’s happy!

home again

Luckily, it was only a short stint in the hospital this time. He was released the next evening, after Diego peed on his own and I pressed that, again, the best place for Diego to recover was our home.

So he’s been back about 5 days now, home with an NG (nasal gastric) tube for feeding. I was trained on use of the pump. Initially I was told that it would be just at night, but after a home care nurse came yesterday I was told that he additionally needed 4 feedings during the day. Today was the first day that I tried this routine, and was not able to reach the goal of 1200 calories. The NG process is pretty gross, involving syringing out stomach contents to verify placement and protect against overfeeding. Since pumping him up, it seems he always has too much in his stomach for me to resume the feeds. I only made it to about 700 calories today with the tube. He did also eat and drink a bit today, so perhaps it is okay. Our next doctor’s appointment is on Tuesday, so I will chat with them about their expectations for the NG. Perfectionist that I am, I am really disappointed that we could not get to the full 1200 calories today.

We are trying to resume our normal home life, but things have really shifted. There is so little time in the day, so much home care, and Diego needs so much of me. It seems that he doesn’t have the ability to tell if his bladder is full, so we have to ask him to pee every hour or two or he will just not go at all until his bladder shuts down. Probably a side effect of the vincristine.
My mom has committed to watching the boys 3 days a week, so we have decided to try to avoid other childcare for the time being. With work, summer is typically slower for me and with all of Diego’s appointments through mid-July, I probably won’t be able to take on much work anyway. As of next week I’ll be working Mondays, Wednesdays, Fridays and Saturdays until further notice. Later this month Diego will begin radiation at UCSF for 5 days a week for 2 weeks. It is outpatient, but it will really be rough…Diego did a lot of vomiting after his first treatment. That in part is why they are being proactive with the feeding tube…because he just can’t afford to lose more weight. After July 15 radiation will be done and Diego will go down to chemo every 3 weeks, versus every week. Perhaps our lives will go a little bit back to normal then?

deja vu

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Barely settling back in at home, Diego was re-admitted to Kaiser hospital today after our second treatment at the oncology clinic this afternoon.

Needless to say, this is hard on everyone.

At home, we were starting to figure out our new normal. It took me about a week of absolute sloth to recover from our hospital ordeal, and Diego was still working on it. Gradually we had been weaning Diego down on the morphine and he had been needing less and less each day. His appetite was improving, but it was still only a fraction of what he had been eating. His biggest obstacle by far has been PTSD. He is completely shell shocked, and does not want to talk about his experience. He has had flashbacks and nightmares and has needed me to hold him for about an hour and a half each night. We have some new “kids with cancer” books that have been helping him, and he needs me to read them to him over and over again. Saturday night while we were reading one of those books, he actually started to talk a little bit about his experience at the hospital in a non-fearful way. This was HUGE, by the way.

But alas, he wasn’t eating and drinking enough to maintain his weight. And that is why our one hour chemo appointment turned into an all day (and now all night) affair. He had lost about a kilo in a week, and wasn’t really drinking. Even after being pumped up on IV fluids he wasn’t able to pee. Apparently narcotics (morphine) slows down both the bowels and the bladder and they believe that this is what caused the problem. Now he was tubes for both input and output.
I’m going to push as hard as I can to bring him home as soon as possible. The doctors had planned to install and send him home with the NG tube (nasal gastric tube) and a pump for nighttime feeding before his urinary issue came up. So I feel that if we can just get him to pee on his own again they will send him home. He needs to get out of bed and exercise his muscles to gain strength but the facilities at this hospital are really limited.

I haven’t yet spoken with the oncologist about the treatment plan here. I feel that for planning our family needs to look at a week, but I’m hoping it will be just 2-3 days. If things don’t work out and chemo is causing the problem, then it could be weeks. But these are just my uneducated guesses.

So far, despite a lot of crying initially, Diego has seemed okay about being here. I’m quite surprised actually. I could credit my superior parenting skills but I think he just seems to get that this is a necessary step to getting better.