I wonder how many of you have stood in our shoes?
You go to the doctor with your problem, have tests done, expectantly wait for the results, see the doctor again...and nothing. The tests are inconclusive...but the problem persists...or in our case...increases.
This is where we're at. Caleb had an upper GI on Friday with mixed results. It's excruciating to watch Caleb live with such pain day after day, yet not know where that pain is coming from.
The care we received at the hospital has been professional and kind. But with no results, Dave and I feel we must press on to get a second opinion.
So for now we're in a "holding pattern"...the kind that happens sometimes when you're flying but can't land. You see the destination but for some reason the pilot can't put the plane down yet. Our plane hasn't landed yet!
I read yesterday in "Streams in the Desert": Let sight give us discouraging reports as it may, but pay no attention to them! The living God is still in the heavens and even to delay is part of His goodness."
We know that God has us here for His good purposes...and obviously delay is part of them right now. Please pray for greater endurance and faith in us as we are delayed, and yet must persist in finding out what's really wrong inside Caleb's stomach.
Caleb's info is in with another doctor here and we are waiting for his response to the case - hopefully tomorrow we will hear something.
Driving through the beautiful, blossoming streets in Portland today, on our way to Doernbecher Children's Hospital, I kept thinking of a verse I read a few days ago in Matthew:
"Which of you, if his son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him?"
The good gift I was asking for today? That the doctor we were meeting with would have wisdom to know where to start in figuring out what to do for Caleb's pain. I completely believe that the Lord answered my first request today!
The doctor met with us for an hour, asking question after question, as if he were a private investigator gathering all the details. I went in prepared to have to fight my way to give him all of our details and information, but instead just answered his questions. He seemed almost delighted to be handed a difficult case! How different from anyone else we have spoken with!
His last words were: "We WILL get to the bottom of this". Ahhh...relief for the ears of this mother.
Through a scheduling miracle, they were able to work Caleb into the schedule for Friday and begin the first round of testing...it's so complicated that I can't even tell you what it is that they'll be doing. But it will last most of the day...they told us to come prepared to spend the day there.
The doctor made space in his schedule to meet with us as soon as all of this first testing is done on Friday. After these results he will determine what the next steps are. The thing that I appreciated is he isn't simply laying out tracks one by one in front of us, if that makes sense. He already has tracks laid out so far ahead, with thirty years of experience behind him and many possibilities in his mind of what this could be. He speculated on a few, but said it's really too early to tell what it truly is. He just wants to take it one step at a time right now.
So I feel like the Lord has given us bread and fish today. And for that, we are praising Him tonight.
Oh and...the children's hospital has a system for identifying different sections of its facility. The symbol for the specialty clinic where Caleb is receiving help?
A FISH!!!
Yesterday was a tough day for Caleb. In spite of the medication he has for pain, it was pretty bad at times... and worse, now there is quite a bit of nausea as well.
My mom, dad and brother came up from Eugene to see us for the day which was encouraging. They ended up staying for the evening and we had a wonderful time around the dinner table with the Watson's, though Caleb excused himself and went back downstairs to lay down in the middle of a particularly bad moment of pain. Boy it's hard to see those moments come and go in his face. As his mom, I see it each time.
I am constantly checking in with the Lord asking if and when we should call in to ER, or just head there. There are a few signs we were told to watch for and if they come, to go immediately. So it's kind of "touch and go" now as I try to monitor his pain and nausea level.
Please continue to be in prayer for us - we need the Lord's guidance and wisdom each day as we proceed through this.
Caleb and I arrived in Portland, OR right on time after our 24 hour trip. Met by my friend Michelle, as well as ER doctor friend, Vernell and her husband, Brian, we all headed straight for the ER at OHSU, making ourselves at home for the five hour wait until he was finally taken in and put in a room. Michelle's mom and dad, Jim and Jan Watson, were there, too - my pastor from years ago and dear friends to this day.
I have never been in an ER in the States so it was quite an experience, one that I will remember for a long time. The staff were so helpful, engaged, professional and yet compassionate. We felt very well cared for there.
They did all sorts of testing on Caleb...carefully watching over him every step of the way. Things in the ER don't move as fast as you think they might though...guess I've watched too much tv somewhere along the way to think that they'd be hustling and bustling around us the whole time! There were long periods of time where it was just Caleb, Jim and I, ta
lking into the wee hours of the morning while the ER personnel consulted and tried to figure out what was the best way to begin dealing with his problem.
In the end they decided to do a different type of CT scan than he'd had in Czech, which meant swallowing 2 liters of barium within an hour...what a champ he was at glugging that stuff down!
My mom, dad and brother joined us around noon as we waited for the results of that test.
Not surprisingly, they found nothing of significance in the scan, nor in the blood work. I'm glad we've been through this before as I was more prepared to hear those results. The last time he went through this, everything came out negative (or positive, depending on how you want to look at it!) and it wasn't until they actually went inside that they found the problem. I wonder if it will be the same this time.
The good news is they were able to get us in to see the Division Chief of Pediatric GI there at the hospital this coming Tuesday (not an easy task getting in as their books were very full). He will take a look at all the labs and scan to make his assessment and recommendation for getting to the bottom of this.
We left the ER 16 hours after we'd come in and went to stay Jim and Jan's house in Portland, just 7 minutes from the hospital. Caleb was terribly nauseated as we walked out the door of ER...kind of strange to be walking out with him feeling so horrible. But we know this is going to take some time to diagnose and treat...I keep reminding myself that we Patty's are often medical oddities!
He continues to have significant pain unless he's on pain killer, which they gave to at least keep him in relative comfort until we go back. He's pretty tired (jet lag doesn't help) and still not eating a lot. But his smile is almost always there and he's had an incredible attitude the whole time. While this is not by any means easy, I see it producing some very sweet fruit in his life.
We have received such an outpouring of e-mails, prayers, love and concern. THANK YOU!! It seems to me that the Lord must have great purpose in all of this since he has called out his saints to cover us in such deep prayer. I can't help but wonder what all this will mean someday in Caleb's life. For sure it is developing a faith and trust in the Lord in all of our lives, something that only comes through adversity and trial.
I don't have time to write much but just wanted to have this info on my blog in case you haven't heard the news.
Caleb and I fly in the morning to Portland, OR and will go directly to Doernbecher Children's Hospital once we arrive. We are praying for the Lord to smooth the way as we travel, and as we make our way into the medical system there. And of course we're hoping the doctors t
here will be able to identify what the problem is and make a healthy plan for recovery from it. I will try to keep up to date with my blog so you know what's happening and how to pray.
In other news...Claire had her first piano recital today. She not only played beautifully, but looked adorable too! I'm so glad I was here for the recital. God is good to take care of those details!
Okay, some of you have asked for the rest of the story on what Caleb is facing.
The doctor believes that the valve between the large and small intestines may have been removed, or at least damaged, in Caleb's surgery six years ago. This valve, the ileocaecal valve, is pretty important as one of its many functions is to keep bacteria from escaping from the large intestines into the small.
During his testing in the hospital they found a foreign bacteria in his small intestines that, until this theory was proposed, was perplexing to them. If this proves to be true, they first want to deal with the bacteria (which is what the antibiotic is for) and then deal with the missing or damaged valve.
During the colonoscopy they will be able to see (or not) this valve and assess the state of it.
The surgeon who spoke with the children's GI specialist said that the last, last, last resort is to open him up again and do anything inside his stomach. He said that for a child to have two stomach surgeries leaves him vulnerable to more problems in the future so he wants to avoid that if at all possible. Thus, the importance of the colonoscopy.
So...that's the longer medical version of what's ahead. Thanks for asking!
PS. You know I can't write a post without a picture! No meaning to this one...just brothers loving each other!
April 24, 08 - Another update on this one...the doctors here in the States don't seem to think this valve, present or not, would account for the amount of pain Caleb is experiencing. He hasn't had a test that would reveal whether or not it's there, but given that right now it's not the focus of their testing, I don't know when or if we'll ever know what part this is playing in his present troubles. I did quite a bit of reading on it before we left for the States and it does seem to be a small, but important part of the intestinal system. Time will tell if this has any relevance or not to his situation.
The pain in Caleb's stomach is still as strong as ever but...there is hope!
We were able to see a GI children's specialist on Monday, who has a hunch as to what's going on. It's long and complicated, and doesn't need to be on my blog...who wants to read a bunch of medical terms and such?!
The good news is that he's finally got an antibiotic to fight a bacteria that's not supposed to be there in his intestines, as well as some pain medicine which helps for about 3 hours twice a day. I asked him how he manages the level of pain he experiences the rest of the time and he said with a smile, "With a good attitude!" I'm not kidding! My 15 year old boy said that!
He went on to say "Why make everyone else miserable, even if I am? I just figure I'll have a good attitude because a bad one will make me feel worse, and make you feel worse". Words of wisdom right there.
He is scheduled to go back into the hospital next Thursday the 17th and be there overnight. On Friday morning the head GI doctor at the hospital will do a colonoscopy. I know he's probably not real excited about that (nor about the fact that I just let my reading audience into that little fact...sorry Caleb) but the thing is...the doctors and we want to know what's going on inside and this is the last option before opening him up, which they really don't want to do.
So we're praying for a few things: that the antibiotic will deal with the bacteria, that the pain med will be of some comfort to him while he's waiting for the antibiotic to take effect, that the colonoscopy will give the doctors the info that they need, that they'll know what to do next and of course...that he will be healed!
Thanks for praying for him...how else could he smile and have a good attitude if it wasn't for the Lord answering prayer?!
PS. Picture from happier days in 1996!
April 24, 2008 - Just an update on this post: The antibiotic did nothing to relieve the pain, and we still don't know if there was/is an infection or not. The pain medication they gave him then was only mildly effective - giving about an hour twice a day of relief...in other words, not much. We didn't have the colonoscopy done in Czech, and they haven't done one here in the States since the problem seems to be more in his small intestines, which wouldn't be seen in a colonoscopy.
We have very colorful and interesting neighbors.
Danka and Zdenek are brother and sister and live on the same lane as we do. They are in their 50's, have never married, their mom and dad have passed away, they have some mental challenges, have numerous farm animals living around, and sometimes in, their house...and they also love Jesus!
Every so often they stop by and ring the doorbell about 20 times (we always know who's calling!) and then ask to talk with "Mr. Priest" (that's Dave). They call me Mrs. Teacher...I am not Mr. Priest's wife, but rather Mrs. Teacher, which I think is funny!
Last night Dave went over to see them after they'd been at our door the evening before ringing the doorbell. They wanted to ask Mr. Priest when he'd be over to pray with them, read the Bible and talk about Jesus. He told them he'd be over Wednesday night.
So off Dave went after dinner last night. When he rang their doorbell (only once) they greeted/assaulted him at the door with: "How's Caleb? Have you prayed for him? You know...prayer really works. You should try it on him!"
Then they spent the next hour together, reading the Bible, praying and Dave answering their many questions: "We heard that everyone who lives in America is a Christian. Is that true?" We heard that some people think Jesus went to live in India for ten years after he was resurrected. Is that true?" "We miss Exit 316 on tv. When is it going to come on again?"
Oh my! Dave comes home with such great stories to tell (once he's changed his strong smelling clothes...they're not big on hygiene or cleanliness over there)!
The thing we love about them though is that they have the simplest and purest faith in God. And above all...they believe God is good.
I'm thinking about them tonight - hoping that my faith is as pure and simple as theirs is, and wanting to proclaim the goodness of God.
Yesterday after getting back the results from the tests that Caleb had been through, the decision was made to send him home from the hospital. He was definitely ready emotionally and mentally - five days of hospital life was enough!
But...the physical problem has not been solved. We do feel confident that they are moving towards a solution though, and will meet with the doctors there again on April 10th for more results of tests being run, and hopefully a treatment plan.
In the meantime...there is still the issue of pain. Last night as I was praying with Claire, Caleb burst into her room with a terrified look on his face. He was having one of the "episodes" of pain (most likely the intestines were telescoping at that moment) and it was the worst so far. It took about a half hour for the pain to subside, and even more time for him to recover. It was a hard moment for him, and for me.
If you were to see him during the day, you probably wouldn't know the level of pain he's in. While he's in discomfort during daytime hours, he smiles, laughs, plays his bass and saxophone, engages in conversation, etc. But it's at night when it often becomes unbearable.
For now he's just taking a probiotic as we wait for the results of lab tests next week. He's going to try and engage in life/school as much as he can - kind of helps to take his mind off the pain. But it's not fun to go through life with it. Pray that God will help him to endure, and even thrive in some ways, during this time.
