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!


Allison said...

You're doing great, very clear. Will be eagerly following and praying. Much love and rest to you all!

Jamie Jo said...

You've been on my mind a lot lately since I've begun praying for another family I "know" from the Sonlight homeschool forum. They are in the beginning stages of battling leukemia with their DS daughter. I don't read your blog often, but it's good to catch up a bunch all at once every now and then. Praying for James and all of you today.