If anyone is looking for an inexpensive, yet really helpful way to support others, consider Gifting a Night at Ronald McDonald House.
We are back that the Ronald McDonald House drinking lots of fluids and eating as much food as we can stand.
...in regards to the post below: Luis says that we aren't the heroes, Rene is for eating and drinking.
The last few days have been hard. I know, many of you give me feedback that includes surprise at how well we seem to be handling "hard" things. Usually, the hardness level is one that I am comfortable with. These last few days were pushing it. It took a lot of effort from both Luis and I to handle the transition from healing of the mucositis (injured digestive track) to re-starting eating.
Often children have a feeding tube inserted through their nose, directly to their stomachs. This is a helpful thing because oral medicines and any food or drink that the children find unappetizing or that causes them to throw up can be squirted directly to their stomachs. It saves parents from nagging and children from gagging.
In fact, Rene started transplant with a tube in place. They ran a children's formula of modified milk, modified corn starch, and other horrible lab-created calories through his tube. It was good because as his throat was hurting more and more and he couldn't swallow, he was still 'eating.' It helped to keep his stomach stretched out and his bowels moving more than bile. After a few days he threw it up (The tip rides up the esophagus and out the mouth along with the "barf.").
They then fed Rene with I.V. feeds, which are hard on the liver. His liver was doing fine and they can't re-insert a tube through a bleeding esophagus anyway. SO, now that he can swallow, the question is: how are we going to get him eating and drinking enough to live on?
They encourage using the tube so that everyone can sigh with relief and he can eat what he feels like eating. The tube just doesn't sit right with us -- especially Luis.
Luis had a few hard days of being the only one who just didn't want the thing.
Imagine: They pin Rene down (ya, ya, they give him an atavan first, but this is Rene we're talking about: atavan, smatavan.) They take a flexible tube, with a tiny, soft, rubbery, mini-bullet on the end of it. They rub a slippery lubricant on it. They put it up his nose. The thing must make his eyes feel like they are about to pop out. Remember getting water up your nose swimming? Then it must grind and dig as it's hitting the back of the nasal cavity, and eventually dig it's way down to the throat. Everyone is talking loudly, "Sorry, buddy. Sorry, buddy. I know it feels awful." Then it starts to feel like the biggest "lougie" ever as it goes down past the tonsils. Everyone shouts, "swallow, swallow, swallow." Rene cried, "I can't. I can't. I can't."
Ok. So that's hard. BUT it's over in a moment.
On the other hand, when Rene bathes, we see that his bum is literally (I know I'm onto bums again, but this isn't boring. I promise that this bum story actually adds to the context.) HALF as big as it used to be. Maybe even A THIRD if I try to remember back to his pre-cancerous body. His knees are adding meaning to NOBBY. They look like a paraplegic's knees (remember the knee shot from Avatar? When the main character is wheeling himself to the room with the pods?). His knees look like that. His ribs are easily counted. His spine can poke out when he's wearing 2 T-shirts.
Enter murdered taste buds. Would you like to eat if all of your food tasted like metallic rice cakes? Right.
So, the nutritionist was freaking because Rene had about 200 calories for 2 days in a row -- and it took us all day to get it in there. Still, Luis and I knew that his system would need a bit of time to come back on line. I called a meeting. We needed both parents, and the doc and nutritionist all at the table. I felt like Gumby, hearing everyone's opinion and no consensus was forming! The ward doctor is absolutely, hands-down the best listener and supporter. The nutritionist is also kind, and patient, and flexible. The doctor listened to all of us, answered questions and offered a wonderful solution: she gave us day-passes so that we could take Rene to the Ronald McDonald House and cook for him and eat together, then come back for I.V. feeding over night.
The doctor was watching his blood and urine samples and he was still OK on the I.V. feeding. Over the days, the doctor has removed oral meds one by one as they were triggering throwing up. (One encouraging thing about the throwing up was that I saw that his stomach was NOT the size of a walnut. There was a lot of volume down there. His stomach must be digesting more slowly than usual. I think he must have lost a lot of surface area in his stomach that hasn't yet re-grown.)
The doctor's assurance that Rene's body was still coping with the low levels of calories helped me to stay focused on real food. We set to work figuring out what he could actually taste and enjoy. Luis and I made a long shopping list. At Ronald McDonald House we made lots of savory foods he likes. Meanwhile, Luis was using his flavour-genius to figure out how to make things palatable. For all my going around I just don't think of: avocado on saltines -- avocado on soup, even. Here's Luis's most award winning idea: scrambled eggs with a cheeto in each bite. Works like a charm.
Cheetoes and plain salted potato chips are the only things Rene will actually actively eat himself. He must be able to taste them.
The doctor says she's most concerned he'll get dehydrated. Well.... I've got that covered. I may not be the flavour king, but I'm the queen of water. Who else uses a litre-sized peanut butter jar at her desk to be sure she drinks enough, eh?
I made a water chart.. I made a water demonstration bottle. We poured Dixie cup after Dixie cup into it.
The latest plan: Rene plays with DSi right at the table so he'll stay there long enough for us to move an entire serving from the plate into his mouth using a fork. He chews like a sloth!!!!!
So far, no tube is needed.
Rene now has lots of neutrophils and his platelets and hemoglobin are holding steady above the minimum levels. His mouth is almost normal and he can swallow again. Morphine is history and so is his suction tube: he can swallow and spit.
He rode the stationary bike with Luis cheering him on this morning. (Physical therapy let him borrow a child's bike mounted on a rack.) He played bowling on the Wii standing up for an hour! He and I broke out a surprise tub of tinkertoys that his Grandpa sent up to him and we made a Ferris wheel.
As Rene was snuggling down to sleep he started to tell me all of the ingredients for making play dough. Is there vinegar in some play dough recipes? Rene says there is. Just before he fell asleep he wondered how long it would take him to start eating normally. I said I thought a couple of days. He was quiet, then said, "Maybe more."
He drank almost a whole bottle of gatorade (the 600ml size) throughout the day and had some saltines with avocado spread on them for dinner. Soft goat cheese, one of his favourite treats tasted wrong and he had to spit that out. It's hard to eat when your taste buds have been massacred. Ice cream also tastes terrible, much to his disappointment. Salty foods are a better bet, but even the goat cheese didn't make the cut.
It's hard to think up ideas, produce them fresh and perfectly handled because we have to be overly careful about food-born bacteria, AND do it all in a hospital where the stove is an elevator ride away, the store is three blocks away, and the silverware is in one room and his fridge in another. We have to wash our hands before getting in and out of the fridge so we don't expose the other bone marrow transplant patients to outside bacteria -- some of them are at much more risk than Rene. I have to think ahead and disinfect a plate, rinse it, find silverware or disinfect that, gather all the supplies, put them down somewhere "clean," wash my hands, open fridge, use disposable plastic utensils to prepare food with, find a way to clean up after myself because I'm not in a kitchen; I'm at the edge of a nursing station and the sink is 10 steps away and there are only hand-drying paper towels to use to clean up with. THEN we have to throw all food items out two hours later so we are sure no bacteria grow in his room.
The hospital has done it's best to set us up for success but the original design of the Oncology wards didn't include food preparation so there are a whole bunch of workarounds in place. Patience is a virtue.
...Oh, and we parents have to eat, too. Generally about three times a day. I'm so sick of products made with white flour, but that's generally all I can get my hands on because I don't want to go home to Ronald McDonald House and cook real meals. We had some great Thanksgiving meals provided for us at the house and on the ward. Yum. The leftovers have saved our behinds... from shrinkage.... ha! Mine is growing from nervous eating and sitting around on it all the time. How do I know when it's time to quit blogging? When I blog about my bum. My bum is boring.
We can tell that Rene's body is starting to recover. For a couple of days now he's had more pain and has had to sleep hard -- signs of his body working on growing and healing. Just today his white blood cells registered at 0.1 for the first time. This is the lowest level they can actually measure.
Rene has been enjoying his DSi (and Super Mario Kart), Treehouse, and a car crashing game on the play station.
He has also started to talk! He uses his suction tube to clean the saliva out of his mouth, squeezes his eyes shut to handle the pain of swallowing, then says one or two words. His voice is feint and sounds a little like he's just sucked on a helium balloon. Sometimes words are broken into two parts with eye-squeezing swallowing in the middle, but he gets them out. Of course, as his mom I feel very tender hearing him work so hard to say so little, but it's nice to know a little about what is most important to him.
So, don't everybody panic. Rene is as fine as is expected. The doctors aren't scratching their heads or losing sleep over his condition. Still, we three are loosing sleep. Rene's discomforts include:
a slight fever, that luckily isn't going up
an extremely sore mouth and throat
thick drool that pools in his mouth and throat - thanks to the sore mouth and not being able to swallow
bowels that move without permission
nausea that comes up and brings up stomach contents
His "comforts" are:
a dentist-like vacuum tube to suck out the drool
low dose of morphine
two parents with positive attitudes to clean, wipe, hug, turn on DVDs, etc.
So far so good. We hope his stem cells start growing soon. As soon as they do his body will be able to heal and will feel better very quickly. We hope that by day +14 we will see some improvement in the counts. We are currently on day +4. Thank God for the Wiggles (of course if Rene could talk, he'd say it's not as fun to watch them if you can't dance along).
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