One Big Adventure
An opportunity to log in some of the thoughts and activities of our homeschooling family of eight. We love books and good food and aspire to a Christ-centered, multi-generational, agrarian life.

Monday, May 31, 2010

Hannah, James and I are pretty settled in the Ronald McDonald house just a few blocks from Egleston. Hannah and I are dreaming of sleeping. James is dreaming of escaping.

He's already tried.

I realized on the drive up, that my mind has been mostly consumed with post-surgery pain management. That made it difficult to really think ahead and make a good plan and packing list. I'm feeling really inexperienced right now, but I suspect tomorrow will bring a flood of familiar memories. Sleep tonight will help, I'm sure. In the absence of sleep, meditating on Scripture will be a very good thing.

But I am honestly hoping for the sleep!

Last week, I was looking for some comfort about this whole process and God gave me this verse: "Call upon Me in the day of trouble. I will rescue you and you will glorify Me." So, following are some ways I plan to call upon the Lord specifically, anticipating His rescue and glorifying Him!

Once I realized how consumed I have been with pain management, I was able to think past that and better consider all the recent conversations with the doctors and nurses about this week. And that helped me pull some thoughts together that might help you great praying friends and family to pray more specifically.

1. Tomorrow morning, we'll have breakfast and walk over to the hospital. Sometime around 11, James should have a contrast study in radiology. They'll put barium in the top of his colon (his mucous fistula, a stoma on his belly). Best case: the study will be perfect, everything will look great and Dr. Parker will be excited about his plan for surgery. Worst case: There will be strictures which will make Dr. Parker concerned about the possibility of blockages created with surgery and he will decide not to do the surgery. If this happens, we will still stay on and Dr. Parker will use the surgery time to do a scope of the whole colon to see what is going on. Prayer requests: Best case, of course! And that we can keep James comfortable during the procedure.

2. Following the study, we admit James to the hospital. And begin flushing to clean everything out for surgery. (Go-litely, anyone?) Best case: We get a room right away and move in and settle. They are all ready to get started with the flushing and things fall into place. James stays comfortable with no cramping, but steadily cleaning out for surgery prep. Worst case: Not sure. Of course, I'd rather not go there!

3. Meet with pain team and nurses. Best case: We love everyone and they love us too... especially James. Continuity of care is as important to them as to us and we get the same nurse for a few days so they know James' baseline and we have trust and teamwork providing pain management for James following surgery. Worst case: Pain management was the WORST part of James initial ostomy surgery. No continuity of care. Nurses who refused to see James was in pain and didn't help. (Children with Down syndrome tend to present differently than typical children with pain and so it makes communication and treatment difficult.) Prayer request: James will also be on clears during this time. Pray we can keep him comfortable and occupied and have worthwhile clears for him to eat and drink!

4. Surgery some time on Wednesday. We do not currently know the surgery schedule. Best case: Surgery would happen early in the morning so we can make the most of the day scheduled pain management team's help and availability. Worst case:?

5. Pain management: This is my biggie...... and it's easy to get stuck on it... It is very important to me as I know it is hard to heal when everything hurts. And how hard it is to balance pain management and gut activity.

6. Tummy rumbles. We and the medical staff will be listening for tummy rumbles (which indicate things are moving and ready for at least clears). Sometimes, pain meds slow this process down. Best case: by day 2, 3 at the latest, James is ready to drink and eat clear liquids. and handles them well. Worst case: He isn't ready and things don't work right and he is 'dumping'--pray against dumping (where output exceeds input because the body isn't absorbing things like it should.) Also please pray things work so well, he doesn't need to use the feeding tube.

7. Ready for food. Best case: Things in step 6 work so well that by day 3-5 post-surgery, James is ready, willing and more than able to eat lighter foods (bananas, rice, applesauce, toast) and he tolerates them well and processes them properly.

8. Stooling. Best case: James demonstrates that things are working because things are coming out the right end, in the right form, amount and timing.

I think once 7 and 8 are in place, they will likely want to send James home, because they know that children do better at home than in the hospital. This just gives me a basic outline to share what I have picked up in conversations recently about 'what to expect'. We could conceivably go home as early as Sunday... more likely Monday or Tuesday of next week. If things don't go so well, we could go home Thursday (doubtful) or later than next Tuesday.

Tomorrow, I'll be able to ask more questions and hopefully be more specific. I plan to update on Facebook regularly (Friend: Stephanie Skelly for updates) and here when I need more room for details... or feel like I do).

If you are reading this Monday, please pray we can sleep tonight. And that James sleeps and doesn't try to sneak away. He got out the door of our room, to the elevator (right next door), pushed the down button and the elevator door was opening just as I got into the hall after realizing that he actually did get out the door when my back was turned. There is no 'hotel' style lock on the door. But I will move the chair over.

Thank you for your concern and prayers for us and James... To God Be the Glory!

Friday, May 21, 2010

The end is in sight

Yesterday we visited Atlanta (James, Hannah and I). We saw James' oncologist, who was happy to report that James' counts were perfect! What a huge blessing and gift! I was supposed to ask the doctor about vancomycin (a favorite antibiotic for James during chemo) and hearing loss. But I forgot. So I will call and ask that questions, and may not get my answer til we visit again next month.

In the afternoon, we met with Dr. P, James' surgeon.

I think he asked me as many questions as I asked him. Well, almost.

He said James is doing everything he is supposed to be doing, but was quick to point out that there are no guarantees and that even though we put everything back together, there is still a chance it wouldn't work. He didn't try to paint any rosy picture. And I actually appreciate that.

If it 'doesn't work', then James would have to have another surgery and a permanent ostomy of some kind. But putting him back together should not be 'harmful' to James. So that is what we have decided to do.

At this point, we are scheduled for surgery on Wednesday, June 2nd. The day before (Jun 1st), James will have a contrast study of is colon to help Dr. P with his surgery plan and make sure things are good. If this goes well, we'll proceed with surgery on the 2nd. If not, then Dr. P will use the scheduled surgery time to do a visual exam with a scope.

I talked to Dr. P about using real food via g-tube if that is necessary and explained my reasons. He agreed and said that "you have all the backing and support you'll need". But then when we asked him about cloth diapers in the hospital, he said, "you can bring metal diapers, if you want." Some doctors are easier to read than others. If you know what I mean.

I'm still not certain about recovery time. At our last meeting in December, he said to plan on a two week hospital stay. This time, he told the scheduler that worked with us to plan on a 5-7 day hospital stay. We will plan on weeks and hope for 5-7 days (as long as that is what is best for James.

We have a lot to do to get ready. I don't guess we'll be squeezing in too much extra.

Lord willing, James only has 10 more days of re-feeding and one or two days of flushing left.

Hopefully, for good.

As always, we are grateful for your prayers!

Sunday, May 16, 2010

Sunday Treats: Blooming Onions

When I suggested we stop buying potato chips a while back, I got the 'hairy eyeball' look. It's not like we even bought them very often, but nobody wanted to give up the option. Especially for birthdays.

Potato chips have absolutely no nutritional bang for the buck (unless you are horribly underweight and desperate for all the extra calories you can get--even then, the oil and salt used in most brands are bad for us).

So, I had to come up with some good substitutes, enjoyed often enough, to sway the crowd. First I had to find some recipes. Then I needed time to try them. Our weeks are already full, so I thought I would try Sundays. We had been having popcorn in the evening, but not as regularly as we did in winter.

We actually started out with potato chips and then tested a simple onion ring recipe. Then we resurrected this recipe, and adapted it to some of the diet changes we've been making. They really aren't hard, just a little time consuming. Don't worry if it isn't perfect. That's part of the charm!

I should have taken a picture of cutting the onion, but I ran out of hands! This time, I used unbleached white flour. Next time, I will try it with fresh ground spelt.

So, first melt and heat your good, healthy fat in a deep pan (I used coconut oil in a 3-quart pot) Then, you cut the onion. Dip it in an egg and milk wash (I used 2 small eggs and one cup of milk for two blooming onions.)

Then roll and gently toss it in the flour mixture (1 cup flour, 1-1/2 teaspoons sea salt, 1/2 teaspoon cayenne pepper--1/3 of what the original recipe recommends, 1/2 teaspoon ground black pepper, 1/2 teaspoon dried oregano--I was out, so used Italian seasoning), 1/2 teaspoon dried thyme, 1/4 teaspoon cumin).

Dip in milk/egg mixture again and cover a second time with flour mixture to coat fully.

Test the oil temperature by putting a very small piece of onion in the fat. If it bubbles nicely, it's ready for the onion. Gently lower the onion into the fat with a slotted spoon. Fry for about 10 minutes.

Serve with dipping sauce on the side. I doubled the sauce recipe since we were doing two onions for 8 of us. (1/2 cup mayonnaise, 1 Tablespoon tomato sauce, 2-3 Tablespoons taratoor sauce from this recipe, because I didn't have horseradish sauce on hand, 1/4 teaspoon paprika, 1/4 teaspoon sea salt, 1/8 teaspoon dried oregano (or Italian seasoning), dash ground black pepper, dash cayenne.)


What kinds of special foods do you like to make to replace old favorite snack foods?

Our mother's day

My mom and dad drove down for mothers' day this year. We had a really nice visit and absolutely gorgeous weather. Vern and the children planned the meal and prepared it and cleaned it up. Delicious food, relaxing holiday with family and perfect weather. We even got to sit around on the front porch!

What else could a girl ask for?

Vern picked a delicious BarbecuedGarlic Chicken recipe from a Lebanese cookbook we were given. It included a dipping sauce (called Tratoor bi Sade) with *45* cloves of garlic in 1/2 cup of olive oil and the juice of one lemon.

He also made and Afghani bread, called Nan or Nani, to go with it.

My mom brought a Nona salad. And the children made herbal mint tea to drink. Mmmmm.

Monday, May 3, 2010

Been there

My children already know this. But my future grandchildren don't.

And with the current news of the day, it seems like a great time to write about it.

Vern and I met in Alaska, courtesy of the Exxon Valdez oil spill. Some may remember that about 21 years ago, the Exxon tanker Valdez ran aground in the Prince William Sound and dumped most of her load of oil. Exxon began clean up efforts, severely hampered by environmentalist oversight and the U.S. military was called in, just in case we needed to federalize the clean up. I was sent up to Alaska as a logistics planner and Vern was our Navy liaison officer. His ship was one of two Navy vessels providing berthing (sleeping space) to oil spill clean up workers. He was the only one who knew about Navy ships. To my knowledge, Exxon leased the ships.

There was a lot to be learned during the effort and while I was only actually on site for about 5 weeks.. and Vern was there for 6 or 7 weeks, we both learned to be pretty doubtful about the ability of the mainstream media's ability to accurately report a story.

We also realized that, in general, people don't learn well from history. The Coast Guard folks we worked with had lots of experience in oil spill cleanups. And they knew their history. Historically, oil spills have been one of those things that clean up themselves over time. During the two world wars, there were lots of spills and within a decade, there was usually no evidence of the spill remaining. This proved to be true of the Exxon Valdez spill as well.

Hopefully, it will be true of the explosion in the Gulf as well. Once the oil stops flowing.