The Wind-up about William

Here is the short version:

1.) The two prep days before William's procedures were AWFUL!
a.) the medicine made him sick to his stomach
b.) he was down to 88 pounds by Friday a.m.

2.) William has been officially diagnosed with Crohn's Disease.
a.) the procedure went well and we will not have to do it again. Thank you everyone for praying!
b.) we have already begun treating it

Here is the long version:

This is not for the faint of stomach. I just need to write it down for my own good, so consider yourself warned.

Wednesday, we began giving William Magnesium Citrate (nasty liquid) and Dulcolax (pills). He nearly gagged while swallowing the liquid because it tastes so disgusting so we doctored it up with sugar and kool-aid and whatever else we could think of and he choked it down. We had been instructed that he couldn't eat anything but clear liquids after 2 p.m. that day. When it came time for his "last meal", he was so sick already that he couldn't even eat it. Shortly after that, he threw up bile and mucus (all over my arm, which was holding the bucket). I called the doctor's office and was informed by the medical assistant that this was to be expected (Hello! Thanks for the warning!) because the medicine is designed to clear out a blocked system. William has had diarrhea for almost two months now, so his system is anything BUT blocked. The medical assistant also said that we needed to keep on giving him the medicine in order to make sure that the doctor would be able to see what he needed to see once he got in there. Great. He took the medicine and tolerated it better in the evening.

Thursday, I gave him his next dose in the morning as instructed. He did his best, swallowing a little at a time and following it with a "juice chaser". Then he threw up all over the dining room table. I called the doctor's office again, because this time none of the meds had had time to get into his system and I needed to know what they wanted me to do. They said wait an hour and try again. Oh, for crying out loud! Give it a break! So I went to the store, bought more liquid, and figured out that if he could keep half an ounce down every half hour, he would be done by 10 p.m. This worked fairly well for the rest of the day.

Then I went to the place where I've been volunteering and left Paul in charge. Soon after I left, William fell asleep - not part of the plan. By the time I got back, we were two hours behind in doses. Not good! So we talked it over, and decided to try giving it to him every 15 minutes instead of every half hour. And he threw up again, so violently that he also lost control of his bowels. (I warned you!). Now we were behind again, plus he'd thrown up the pills, we needed to wait an hour before we could attempt to give him anything again and we were running out of time (he was not supposed to have anything to eat or drink after midnight). At this point, it wasn't looking like we were going to get the medicine in him. We could only hope and pray that his system was cleaned out enough for the doctor to see what he needed to in order to diagnose correctly. We gave him two more small doses of the liquid before midnight and went to bed.

Friday, William and I got up in time to be at the hospital by 6:30 a.m. for his procedure. I was seriously sleep deprived, but functional. He wore his pajamas. They checked us in and escorted us to a room where they prepped William. A nurse came in and attempted to start an I.V., but because he was so dehydrated, she had significant difficulty. She was also trying to draw blood from the same spot and was unable to do so. Finally, she was able to get the I.V. line in where it belonged and then poked his other arm to draw the blood. I am normally able to watch these procedures, but when she started having trouble and William was in pain, I could feel myself getting faint. So I looked away, worked my legs a bit, talked to William, etc. until the feeling passed. Whew.

After a bit, another nurse came in and brought us down to the room where William would be having his procedures done. As soon as we walked through the doors into the room, I could feel my guard go up. I realized I had been under-emphasizing the fact that William would be under anesthesia for the procedure because it makes me really nervous. There were at least five people in the room making preparations. The anesthesiologist introduced himself to me and asked a couple questions about how William has tolerated anesthesia in the past. The Gastroenterologist was there and asked if I had any last minute questions and said he would come out and share pictures and chat when they were done. (William told me later that he was giving him the evil eye the whole time - he blames the doctor for coming up with the idea to have these procedures in the first place). Then they started a drip through William's I.V. and it was time for me to go. So I kissed William and told him to keep being a trooper and left with one of the nurses. As soon as I got out of the door, I started to cry. Man, that is hard to leave your kid with a bunch of strangers in a surgical room and a mask over his face. The nurse was kind to me and waited while I pulled myself together, then showed me to the waiting room. Ugh!

At the end of the procedure, the Gastroenterologist came out and spoke to me as he had promised. The pictures he had been able to take made it very clear that William has Crohn's. I was just so relieved that he was able to see what he needed to that I almost cried again. (I told you I was sleep deprived!) (I had also been plotting my counter-attack in case William was not cleaned out enough for the doctor to see what he needed. I have firmly decided that there needs to be another preparation protocol for people who have had diarrhea for as long as William has and that surely, there is another way.) The doctor also said that we could begin treating William's symptoms with Prilosec (for sores in his throat) and Prednisone (an immunodepressant, designed to help his body stop attacking itself) the next day! This also almost made me cry. It has been a long time of waiting in order to give him something that might help him feel better and quit losing weight. The rest of our time at the hospital was non-eventful. He woke up, ate a popsicle and some water, rested a bit, watched "The Price is Right" with Bob Barker (!) and went home.

A note about the medicine: The doctor warned us that Prednisone is not something you want to be on over the long haul as it has several nasty side effects. Some of them are: stunted growth, irritability and moodiness, lowered resistance to infections, puffiness, acne, and weight gain due to increased appetite. He will only be on it for a couple of weeks, and then we meet with the doctor to discuss our course of action over the long term.

My initial thoughts re: the side effects were "no big deal" because it is only short term. In fact, weight gain sounds really positive at this point. But he started with the moodiness and irritability yesterday already, and it promises to be a LONG two weeks. He is worse than me with a really bad bout of PMS. Paranoid, angry, blaming, angry, sad, angry, you name it - all bundled into these incredibly intense moments that need to be dealt with RIGHT NOW! Today was much better - we are talking openly with him about how to validate his feelings without validating the intensity of his response. I'm sure we will get through it, and again I'm so thankful to be doing something that is moving toward recovery vs. discovery that this is just a little bump in the road. Thanks again for walking it with me.

Visit

It has been two days since Paul's sister Jill and her family left, and we are still recovering. We had a blast and did a TON of sightseeing: Mt. Hood and Multnomah Falls, Mt. St. Helen's, the Zoo via the MAX (we had planned on going to the Forestry Center, but there was an area wide power outage that day - fortunately, the Zoo has a backup generator so that became our default outing), meeting up with Paul and Jill's cousin Wendy and her family, and, of course, the beach.

Mount St. Helen's was AMAZING. We had read that the drive to the mountain was beautiful, but we were still wowed. The road follows the path of the Toutle (pronounced "Tootle") River gorge, with beautiful vistas and thick forest throughout. The river itself doesn't look like much because of all the ash that has been deposited along the river's path, clogging it and causing it to look more like a stream. The forest growth was actually much younger than we thought - Weyerhauser has replanted logged areas, and the oldest section we saw was twenty years old.

When we got to the mountain - or should I say, VOLCANO, it was (safely and slowly) erupting. There was a small stream of smoke coming up from one section of the crater and we were told that the equivalent of one dump truck full of ashy lava was being extruded every 10 SECONDS. At this rate, the mountain could rebuild itself in 50 years. On the way home, we stopped at a campground/helicopter/horseback riding establishment that also served food and had a great mountain-worthy meal. (They also have a yurt that you can stay in! Maybe we'll come back and we can spend the night there!) Paul and I are looking forward to going back, as we felt like we only scratched the surface of what there is to do and see in that area.

We finally got to try Reo's Ribs, a restaurant that I've had my eye on since the first week we've arrived. There is a large smoking contraption outside the building - you can smell the meat slow cooking when you drive by. When you go inside, it is as though you have been transported to the middle of Mississippi in the summer, except this building has air conditioning and serves SoBe juice. They serve ribs (the best I've had in a LONG time), bbq brisket, catfish, fried okra, cornbread, greens, and the list goes on. I've decided that if Paul ever mistreats me, I'm going to take my container of Rolaids and go stay with Reo. :)

We also went to Mo's, which is supposed to be one of the best seafood restaurants along the coast. Disappointing food, when it's been built up to be the best, but we got to eat outside with a view of the ocean. This was especially cool when one of the other patrons jumped up and said, "Whales!" and we all got to see a small pod of whales swim by, spouting and frothing the water around them. Lucky!

Other notes:

The deck has been built and it looks great! Whew, that felt like a close call.

William's procedure is this Friday. He will be going on a clear liquid diet beginning this afternoon and continuing through tomorrow. I'm really not looking forward to this, and neither is he. Ugh.

We are also bracing ourselves for another bout of 100 degree weather this weekend. It still amazes me that we can live through it without air conditioning, but it gets down to the mid 50's at night and that makes it palatable. Weird!

More Updates

William: William has continued to feel better this week and has stopped losing weight. An appointment with the specialist opened up on Thursday, so we snatched that up right away. The preliminary diagnosis is Crohn's disease, a type of inflammatory bowel disease. It is a lifelong disorder treatable with medication. In order to confirm that this is indeed what we are up against, and therefore how we will treat it, William will undergo an endoscopy and colonoscopy next week. Prep for these procedures is actually worse than the procedures themselves, from what we hear. He will be required to stay on a clear liquid diet for a day and a half before he goes in. He is not at all pleased about this prospect and tells me he is sick and tired of being a "lab rat". I don't blame him.

Henry: Henry is the name I have given to the MINI Cooper I designed for myself online. Version 1: The paint color I had chosen for Henry no longer exists, so until they bring that color back, I am holding out for the perfect MINI. Version 2: My stinking husband won't buy me everything I want and made me choose between finishing the kitchen and getting Henry. Version 3: Because we need a car TODAY, AND I was unable to get the perfect MINI at this time, AND even if I could get the perfect MINI it would take a few months to get here, AND the kitchen is way up there on the priority list (I currently have three Target "Organize It" shelves for my mixing bowls, crock pot and so on, a bookcase which acts as my pantry, my fine china in the linen closet, paper plates in the garage, and a fold-out table for counterspace), we rationally decided that we should get a reasonable car for now, finish the kitchen, and put Henry on hold. (Sob.)

Lola: Lola is the name I have given to the car we got (as in Run, Lola, Run!). She is a five speed, 2002 Chevrolet Prizm (thank you for the recommendation, Kristen!) with 35,000 miles on it. She was owned by a gentleman that sounded like George Kelley over the phone and called me "Sweetie" when we hung up. (I had talked to the owner of another car as well. This guy sounded like I had interrupted him from his favorite t.v. show, his babe, and his ice cold beer. I would have smacked him if he had called me sweetie.) Lola runs well, was loved by her previous owner, and has a great sound system. I am bracing myself for the process of getting the title in my name. Another trip to the DMV!

Talley: Talley is my sister, who came for a visit with her family (husband Mircea, son Teddy and Mircea's daughter Erika) last Thursday through Saturday. It was really good see all of them, as we genuinely love each of them. We took the MAX to the zoo on Thursday, went to the beach for the day on Friday, Erika and I went to see Pirates of the Caribbean Friday night, and we took a walk in a beautiful park near our home on Saturday before they left. There is more to say about this visit, but I will need to create another blog for that...

Deck: This is what I want to do to the guy who is supposed to be re-building the deck off our Master bedroom. Unfortunately, I don't think it would help much, and I would be the one that got hurt. Plus I really like the guy and when he is here, he does good work. (This guy is maybe three inches taller than I am, but three times as heavy. His calves are the size of my thighs and, while he is big, he is solid. It would be like trying to deck a refrigerater full of cement blocks. Well, a wheezing refrigerator. Maybe if I could get him to run after me I could beat him...)

He says he will be here on a certain day to work and then he never shows up. Then one day he did show up, got the footings and the frame done, said he'd be back in a week and I never saw him again. That was two, maybe three weeks ago. Then we got a letter from our insurance company saying that they will be terminating our insurance next Tuesday because we have a deck with no railing. So I call him and tell him that while deadlines hadn't been important before, they are suddenly very important, and could we arrange a day for him to come and finish it up? He said sure, I'll be there next Monday. That was last week and he never showed. I called the insurance company to ask for an extension, which, with some proof like a photo of what has been done and a copy of the proposal, they will consider. He just called this morning and said he will be here tomorrow to finish it up. We'll see.

Jill: Jill is Paul's sister, who is coming tonight with her family for a week-long visit. We have a ton of things planned and are looking forward to our time together. Bring it on!

Update/Giving Thanks

Thank you for your prayers. We've had several phone calls and emails indicating that people are praying and we genuinely appreciate it. William has had two really good days with little or no fever and a better appetite. He and I (Lydia) went to the dog park and had breakfast together at a nearby restaurant yesterday, then went swimming and to Barnes and Noble. This is a HUGE improvement! He has been lucky just to get off the couch prior to this.

Today, he is ornery and wants everything his way. For instance, he was planning on having tuna salad on crackers for lunch today. I made the tuna and turned around to get the saltines and they were all gone. When I broke the news to William, he had a complete fit, didn't want it on toast, couldn't think of what else he could eat and so on. As I disciplined him for his terrible attitude, I was beaming inside. Earlier this week, he would have just rolled over and said, "That's okay, just give me whatever," a true sign of how very ill he has been feeing. I even told Paul that I would welcome butting heads with William over something stupid, because it would let me know that he is feeling better. Be careful what you ask for, right? :)

We are still in the waiting game to figure out what exactly is going on and have an appointment scheduled with a specialist on July 12th. But we are encouraged and hopeful and thankful because William is feeling so much better for the time being.

While managing William's illness this week has been fairly all-consuming, we are consciously trying to take a "panoramic" view of the situation. In other words, we are forcing ourselves to see that, while our activities and thoughts are turned more toward William than they normally are, those activities and thoughts are not the whole picture. We still have swimming lessons, trips to the library, more swimming, work, continuing to put away the contents of boxes, getting psyched for Lydia's sister and family to visit after the 4th, getting psyched for Paul's sister and family to visit right after that, and trying to decide whether or not now is the time to buy the mini cooper (Lydia: Well, duh! We're down to one car! Of course it's the right time!) (Paul: Not necessarily. First, we have to configure the cost output ratio as it compares to the savings/income ratio in relation to the intended expenditure ratio for the entire household and the priority factor as it relates to all of the above. Then we have to think about this for a significant period of time while Lydia patiently waits. If Lydia fails to wait patiently, we must reconvene, discuss the matter, stress the importance and moral value of thinking through these things thoughtfully and with patience, and begin the process again.) Uh, yeah, we're having fun with this one...

So again, thank you for your prayers. God is answering, we have more grace, William is rallying, and we are getting closer to knowing what is going on. Thank you.