Okay, my intent was a short, succinct explanation of his daily chores and the equipment and supplies he uses. Intent being the key word. :) I've also added information about his restricted diet. All of it falls under the rules and expectations he has to follow. I'm hoping this will give everyone a better understanding of what is expected of BMT patients and why.
As I've mentioned, there are certain chores Chase is required to complete. He certainly sees some of them as tortuous, especially when he is feeling really bad, but each one serves a purpose to keep him healthy and to prevent infection. He had to do all of this through his last transplant as well, but this go around they (the doctors and nurses) are being especially vigilant since his donor is unrelated.
So, here are Chase's fun-filled activities!
#1 -
Biotene Mouth Wash
This is specially to combat dry mouth. It has a minty fresh smell and doesn't seem to be all that bad to me. Yes, I have tried it. However, he has to use this four times a day, so I can see where that would get tedious.
Chase needs to keep his mouth moist and as free of bacteria as possible. With mucositis, he can develop sores in his mouth, which can lead to infection. Biotene helps in these areas.
Mucositis is caused by the chemo, which basically destroys the cells lining the gastrointestinal track. In some cases, they can shed profusely, which leads to sores and bleeding. The "shedding" process made Chase so sick last time he threw up at least once a day, daily for 30 days. It was mainly mucous and bile since he rarely ate.
#2 -
Respiratory Therapy
This gadget, the name of which I can never get correct, is what Chase uses to exercise his lungs. There is a mouth piece on the end of the blue tube. When he inhales, the two moveable parts inside indicate the volume of air he is taking in.
When you are in bed as much as he is, it is very important to exercise the lungs. This helps prevent fluid build up that can lead to pneumonia. Chase has to use this either 8 times a day, 5 good inhalations each time or 4 times a day with 10 good inhalations. What is good? Right now we aim for 2500, but when he's feeling a lot better, he can hit the top volume of 5000 easily.
#3 -
Walking Laps
Why the picture of the pole? Because where Chase goes, the pole goes. This thing is loaded with pumps and pretty heavy He is required to walk around the nurse's station and playroom (a good sized loop) 10 times a day. He can break the laps up, but 10 is the minimum.
Laps are another way to exercise the lungs, muscles, heart, etc. He may eventually have days where he can't walk all ten laps and/or needs a lot of assistance, but the walking is vital to keep him healthy and to prevent muscle loss.
He fights me on the laps from time to time. There is a also a great deal of bargaining that goes on with him, most of which is designed to put it off for as long as possible. Can't blame a kid for trying.
#4 -
Brushing Teeth
No picture really needed here. He's got to do this twice a day. We all know why we do it, but it also helps to keep his mouth clean to prevent infection.
#5 -
Chair Time
They brought in a comfortable recliner a few days ago that Chase is supposed to sit in for two hours a day - upright.
Yes, he's in the chair in the picture but not exactly in the upright position. In his defense, he was still sleeping off the Versed Rebecca used to lightly sedate him for the NG tube.
Believe it or not, he does fight me on this. He tries to raise the back of his bed up as high as it will go and swear to me that he will sit up. Rebecca said, "No." Enough said.
By the way, the chair bears my name. Literally. Caroline Recliner. It is pretty comfy, too.
#6 -
Oatmeal Bath
This is one of Chase's most favorite things to do each day!!! Um...that would be a big NO. We get an Aveeno or generic brand packet daily, and he is supposed to sit and soak in it. No soap. The purpose is to keep his skin as soothed as possible. Rough or cracked skin can be a source of infection.
Usually, Chase can get temporarily unhooked (hep locked) from all of his IVs to take a bath. We have to drop his lines into a ziplock bag and then tape the bag over the bandage that protects where it goes into his chest. However, during BMT time, his fluids and medications cannot be turned off, especially the cyclospirine (anti-rejection medication). That means he has to put them over his shoulder where we tape them down and then tape the bag over his bandage. Once gain, where Chase goes, so does the pole, and it really inhibits his mobility.
#7 -
Eucerin Lotion
 |
| Chase portrays his reaction to lotion. |
And now we have Chase's all-time favorite chore! Lotionizing!
Fact #1 - He cannot stand lotion.
Fact #2 - He especially does not like THIS lotion.
It has mineral oil in it, which may be why, but in general he does not like using lotion of any kind.
After his bath (and we are supposed to do it in the morning, too) he has to use it. It's cold, which makes it all the worse. I have to get my hands as warm as possible, and we're trying to find ways to warm up the lotion while it is in the bottle. I'm trying to make the more distasteful tasks as comfortable as possible.
This bottle is actually the one left over from last transplant. He has a new one waiting for him in the bag to the right.
#8 - T
he Goody Bag
I swear this is what Stacy called it when she brought it in to him. There is nothing "goody" about this bag. Aside from the Eucerin bottle, the rest of the contents are meant to pamper his posterior region.
This is not the prettiest of topics, but is unfortunately necessary.
Any kind of rashes, breaks in the skin, or tearing of the skin (while going #2) can cause infection. These are used to help prevent and treat those issues. Chase also sometimes gets colace, miralax, or other products to ease constipation that his meds and chemo cause. Constipation can lead to the aforementioned skin issues and then infection.
Good ol' ingenuity
Before we get to the food restrictions, I wanted to share this handy little piece of ingenuity. What is it? These are plastic medicine cups taped upside down to the top of the bed rail.
Why?
He has two self-administered pumps and many other lines for IV-based meds and his nutrition tube. They get tangled and fall between the mattress and bed. This can keep him from turning over, they tug on him in his sleep, and if they fall down, he can't easily find the buttons to give himself boosts of pain killers or anti-nausea drugs. The cups do a decent job of keeping them out of the way, while still letting him move. It also puts his two pump buttons where he can easily find them. Marlene showed us this trick last year. I love it!
Food Restrictions
Food restrictions are in place for Chase's safety. Any of us can get food poisoning. However, bone marrow transplant patients are particularly susceptible to it because of their suppressed immune system. From time to time, there may be foods we consume that have not been washed, handled or cooked as well as they should have been. In spite of this, our immune system does its best to mitigate the effects of food poisoning. Granted, the symptoms even for us can be severe, but for a person with a compromised immune system, the symptoms can be life threatening.
And the downside to protecting him? Chase is barred from eating some of the things he really likes. This diet is SUPER strict while he is in the hospital with a low white blood cell count.
Absolutely
NO fresh fruit or veggies are allowed at this time even if they are on the approved list. They have to wait until his counts are recovering.
The diet itself will restrict what he may eat for the
first 100 days post transplant. This is generally the rule. Today is
Day +2 since transplant day is Day 0. 98 more days to go! So, here is what we will have to work around.
NO eating fast food or restaurant food. Period.
NO food from outside organizations, such as food brought in by volunteers to the hospital or from others.
Food from home...
ALL foods must be freshly prepared and and brought to the hospital the
SAME day. They must be kept in a cooler with ice during transport.
Fruits & Veggies
Anything with the word "berry" in it is not allowed because they can't be adequately washed. That also includes grapes, pineapple (don't understand why on that one), kiwi, peaches, nectarines and plums.
Whole fruits that can be peeled like apples, oranges, and melons are okay. Bananas are on the list, too but last time there was some question about them, so for now they're off.
Anything canned, dried, or frozen (except berries) he can have. The whole berry thing really stinks because Chase loves strawberries! Thankfully, he is still able to consume commercially processed foods with strawberries, but it's still not the same.
These restrictions also apply to hard to wash vegetables like broccoli, lettuce, mushrooms, carrots, etc. He can have frozen veggies that have been cooked, canned or fresh ones as long as they aren't in the "hard to wash" category.
Dairy Products
Absolutely nothing from the deli or anything homemade or any type of aged or soft cheese. If Chase felt like eating Mexican cheese dip, this would be awful for him. He loves queso and chips and they help fatten him up, but he'll have to abstain. The boys and I like cheese, so if William or I want to eat any, we're going to have to not do it in front of him.
He can have commercially prepared dairy product and homemade smoothes or milkshakes made from approved foods. Last time, I made him milkshakes with crushed up "fun size" candy bars in it to fatten him up. He can't have soft-serve ice cream or fast-food ice cream, so these were a favorite and gave him a lot of calories, too.
Meat, Poultry, and Fish
Only well-cooked, frozen or canned meat, fish and shellfish, game, poultry. The same goes for eggs or egg substitutes. No deli meats (only commercially packaged) and hot dogs must be cooked.
Nuts and Seeds
If they are in the shell, unroasted raw nuts, or seed type nuts including watermelon or squash, they are NOT on the list.
Anything commercially packaged, bottled, canned, and commercially roasted in the shell is okay, which includes peanut butter.
Breads, Cereals, and Grains
Absolutely nothing from a deli, made in a grocery store bakery, or local bakery. Commercially packed good are okay, but no eating raw or uncooked pasta, rice or other grains. Raw or uncooked pasta? Our dog, Maya, loves eating the hard, uncooked spaghetti noodles that fall to the floor when I break them in half for cooking. She's waits for them. Weird dog :)
Beverages
Nothing unpasteurized and no sweet tea made from warm or cold water. Drinks that sit out more than an hour have to be discarded.
Desserts
If a pastry is cream-filled, it must be refrigerated. Homemade and commercial cookies, cakes, pies, pastries, and pudding are okay. Commercially packaged ice cream, popsicles, ices are fine.
Other
No raw or unpasteurized honey. No homemade jams or jellies, herbal or other supplements. All condiments have to be refrigerated after opening.
At first, all of the chores and food restrictions were a LOT to remember and to keep track of, but after a while it becomes routine. He didn't have to stay on the food restrictions for 100 days after we found out the boys were identical. Can't reject your identical twin's marrow. We will have to follow the rules this time though. Just to make sure we aren't considering foods that are restricted, I keep a list the hospital gave us close at hand.
I hope this was informative and helped give you a better idea of BMT life. When all is said and done, it will be a road bump in his past. Until then, we take things one day at a time.
We had another great night last night. Chase slept peacefully and around 9:30 this morning, I heard him call William's name, who is not here. Not receiving a response, he started calling for me. I answered him, and he replied, "Oh, you are here."
Any other patient (not BMT, AML) that has to be booted from their room temporarily is either moved into the rooms we were are in (unless the air system completely fails) or they are floated to other floors. The Aflac nurses follow the patients wherever they are going.
