What's going on with Isaac? [Part 8: Biopsy results]

The GI called me with Isaac's biopsy results yesterday.  He said that it's all great news.  All the biopsy samples that he took from both the upper scopes and lower scope are completely normal.  There was no evidence of inflammation, no evidence of any allergy, no evidence of mastocytosis.  So from a scope standpoint, a completely clear bill of health.  (He suspects that his symptoms were more on the viral spectrum based on that information.)

So that is great news. I truly am thankful. And perhaps we should just accept that and move on? Except that Isaac is still having stomach issues: several trips to the bathroom each day and increased stomach pain. (Which is puzzling, obviously, because of the clear-bill-of-health statement from the GI doctor.)  For the most part his joints are almost completely better.  For the past two days he has noted pain in his finger joints, but that's it.  His hives seem to have cleared up. He hasn't eaten enough for me to judge his appetite yet.  He is weak, but seems to be getting stronger each day and for that we are so thankful.  I feel like we're settling back into normal.

But even if he didn't still have a smattering of symptoms, I don't know if I can just think, "Well, that was strange..." and move on with life.  Because two weeks ago he wasn't able to move.  And there's a reason for that.  (Right?!)  Even if all of his symptoms were from a viral infection, what is going on in his immune system that would make it respond that way? It's just not a healthy immune response.

{yesterday's breakfast}

We still plan to see a rheumatology specialist, which could bring us some answers- but since his joint pain has cleared for the most part, it almost seems like an afterthought.  We're waiting for a referral.  And we still have one follow-up appointment with the GI specialist, next week.

I had planned on eliminating gluten from his diet this week, just in case it was Celiac Disease, or in case he was having an allergic reaction to something that was triggering all of this (or some of it), but the doctor says it's not Celiac-- the biopsy would have shown that. So he said that's not necessary.

So we just wait, I guess.  And watch him and see how he does.  

As always, your opinions and ideas are always appreciated.  Please do weigh in on this if you have thoughts.  And again, thank you for your prayers and concern.   You have been so kind, and you are so dear to me, all of you.  

Blessings to you and yours, 
~Stacy

 

What's going on with Isaac? [Part 7]

All these posts about Isaac have been taking over the blog.  I'm sorry.

It's sort of taken over our lives, too.  We haven't done any homeschooling all week, and I can't remember the last time Isaac completed a full school day.  I'm trying not to worry about getting several weeks behind and having to go later into the summer.  (We likely won't.  I'll just end up slashing some stuff and doubling up on other things and we'll make do.)

For now, school is just not doable.  We are trying to keep up with chores.  (Except Isaac's, which I've taken on or delegated out to either Ella or Isaias.)

And with no school, the kids are having a lot of free time.

Audra wrote, illustrated and bound a book this week.  She also made some costumes from paper and markers (a kangaroo and ET) and then hopped or waddled around the house.  She's constantly drawing and crafting and chatting.  She's so funny and creative.

Adelia and Isaias have been making up games, jumping on the trampoline, and playing board/card games, and generally running through the house and up and down the stairs very loudly until I send them outside.  They are so physical and noisy and I love them.  And I love it that they've been getting along these days.  That is such a gift.  Isaias has also taken to writing a book.

Ella has been writing letters, baking, painting (watercolors), and also working on a book that she's been writing for several months.  She's often playing with the younger girls, too.  Or helping me with the extra chores.

Isaac is resting a lot, working on puzzles, reading and drawing.  Playing LEGO.

We are treasuring family meal times, and when Mark reads aloud to us in the evenings.  Those have remained anchors in our otherwise chaotic days.

* * *

So...  Isaac.  He was SO sick and miserable Tuesday night.  I was worried about him, and wasn't sure if we'd hear him if he was sick and needed us, so I decided to set my alarm every couple hours to go check on him.  Every single time I checked in on him, and the one time Mark did- he was sleeping peacefully.  I was so tearfully thankful to God for this reprieve.

Wednesday morning he was still very nauseous.  Mark and I took turns sitting beside his bed.  He doesn't like to be touched while he's throwing up, but he does want someone there, near, and praying for him.  ;)  He kept feeling like he was going to throw up, so we'd gear up for it, but he never did.  He was miserable.

Finally, right around noon, he felt like he could take a drink, so he took a sip of apple juice, we waited five minutes, then repeated that.  He held it down.  A couple of hours later he felt strong enough to sit up, then get dressed (with help), then come upstairs.  The rest of the day was good.  He was holding down liquids and a little food, and his appetite appeared to be returning.

On Wednesday evening he described some of his symptoms to me, which was instantly alarming to me because on the discharge papers we'd received from the hospital there was a list of problematic symptoms beneath the heading "When should I call the GI doctor?" and Isaac had just named two of them from the list that he was experiencing.  Great.  So I dutifully called down to Seattle Children's to speak with the on-call GI doctor, after hours.  I thought he would just say, "Okay... why don't you just watch that for another day or two and call back if you think it's getting worse."  He asked me some questions, listened to me tell about Isaac's symptoms, and then told me I needed to take him to the ER or Urgent Care to get his blood work done.  As in, that very evening.    

I didn't know if I should be concerned or not.  I had been feeling encouraged as the day went on, because he was holding down fluids; he wasn't experiencing pain, etc... but the on-call doctor just wanted to be cautious and make sure his blood work was good; get his levels checked to make sure all was well... so off we went.  

Isaac in the ER last night, looking at National Geographic Kids.

Mark stayed home with the other kids and Isaac and I headed to our local ER, where they checked his vitals, put in an IV, and drew blood.  Then they gave him some fluids to hydrate him.  The ER doctor came in and assured me that his levels were good, that his white blood cell counts weren't elevated; and ultimately that he wasn't concerned about his blood loss or that any perforation had occurred during the colonoscopy.  He communicated these results to the on-call doctor in Seattle and we were finally able to go home.  (This paragraph all sounds so nice and quick but we were there for a couple of hours.)

That brings us today, Thursday.  Isaac has been resting well today.  His joint pain is pretty much gone.  His hives have disappeared for the time being.  He hasn't complained of a sore throat and I'm not asking about it.  He is still making lots of trips to the bathroom so his stomach is still having issues, obviously.  His main complaint is that his stomach feels "hot"; which I don't exactly understand.  And he has battled nausea today.

I'm constantly trying to puzzle through what's going on.  Why the sudden disappearance of his joint pain-- which was his primary symptom for the past couple of weeks?  Maybe he did indeed just have a really bad viral infection that caused reactive arthritis (joint pain).  Could that have also been responsible for the hives and sore throat?  But now the viral infection is suddenly gone?   But if it was a viral infection, why did none of the rest of us get it?  And that still wouldn't explain the stomach issues- that have been going on for nearly two months.  They ruled out a bacterial infection in his stomach (through looking at his blood work), so it must be food-related then.  (Right?)  The only thing I can figure is that something he was eating caused inflammation inside his intestines and then extended into his joints.  But then when his appetite dropped, it eased off significantly and thus didn't show inflammation on the colonoscopy?  What will we do if the biopsies show nothing?  It's all so convoluted.  Any theories or ideas welcome, fellow mamas.  What do you think?

I continue to thank God for sustaining us through this trial with Isaac.  In the midst of not knowing what is going on, we trust so much in the one who DOES know; who holds us in His hands. 

In the wee hours of the morning I opened the Psalms and was comforted by so many of God's words:

He will have no fear of bad news; 
his heart is steadfast, trusting in the LORD.
His heart is secure, he will have no fear. ~Psalm 112: 7-8a

The LORD is gracious and righteous; 
our God is full of compassion.
The LORD protects the simplehearted, 
when I was in great need, he saved me.
Be at rest once more, O my soul, 
for the LORD has been good to you. ~Psalm 116: 5-7

How can I repay the LORD
for all his goodness to me? 
I will lift up the cup of salvation
and call on the name of the LORD. ~Psalm 116: 12-13

The LORD is with me; I will not be afraid.
What can man do to me?
The LORD is with me; he is my helper.
It is better to take refuge in the LORD
than to trust in man. ~Psalm 118:6-7a, 8.

I am so thankful that our refuge is in the LORD; that He is with us; that we need not fear; that He is worthy of our trust.  I am so thankful that He is gracious and full of compassion.  He is our protector.  He is good and worthy of our praise.  May I continue to rest in Him, may I continue to have a steadfast heart, trusting in Him.

Love to you all.  Thank you for being family to me through your kind comments, your prayers, your emails, your texts, and for your concern for our boy.  I truly thank God for each of you.

~Stacy

What's going on with Isaac? [Part 6: Post-procedure Update]

Hello, friends~

It's nearly 10 o'clock and it's been an especially long day.  I'm checking in tonight to give you an update because I know so many of you are diligently praying.  Thank you.

Yesterday was rough with Isaac not being able to eat all day.  He was able to have Jell-O, 7-Up, Gatorade, water, popsicles, juices and broth. (But nothing with red or purple dyes.)  His favorite liquid yesterday (and mine; I did his liquid diet with him) was homemade chicken and bone broth.  We drank it from mugs like tea for lunch and dinner and it was the only satisfying thing.  He was really hungry come dinnertime and then again this morning.

I'm fast-forwarding through the getting-there-getting-checked in process and taking you to the prep room, where we were sitting with Isaac, waiting for the new doctor to check in.

(Someone from the hospital had called early this morning to notify us that our original gastroenterologist had been called away on a family emergency and was out of the country, so he had called someone else in to do the procedure for him.  I tried not to be stressed about that, and reminded myself that God was in even *this* detail; that this was not a surprise to Him; that this was God's plan.  [I had previously taken some comfort because the doctor that was originally going to do the procedure had been there for several years and was the department HEAD, so that made me more confident in his experience and abilities.]  But God is the head of all things, so I trusted Him in this change.)

Isaac was serious, thoughtful, wanting to move forward and get to the other side of this.  His questions for the doctor (who we liked very much, by the way) were primarily centered on exactly what would be happening and how long it would take.  Also, when could he eat and drink again?

Shortly after noon, we met the anesthesiologist and a nurse, and then we went out one door and I looked over my shoulder as they led him out the opposite door.  I had a moment of tears because he seemed so vulnerable to me in that moment and I didn't know what waited for him on the other side of that door.

Mark and I had about an hour in the waiting room, where we prayed together, texted a few family members, ate something and people-watched.  (A children's hospital is one of the saddest places to spend time in, and I marveled at the strength and courage of the parents and children we saw there today.)

Within the hour we were paged and met with the doctor, who had just finished up.  He showed us photos (which were fascinating) of Isaac's esophagus, stomach and intestines.  He said the procedure went well; that everything looked good.  He said things looked "healthy and normal" by all appearances.  There were a couple of areas that looked like there may had been inflammation recently, and there was one area that *may* indicate a pattern that would point to Celiac Disease, but he said there were no real alarms or red flags.

I was surprised, because I wasn't really expecting that.  I was expecting them to see something; to find something.  But I guess that's good?  I'm still not exactly sure what or if that rules anything out, necessarily.  He took 9-12 tissue samples from the upper tract and the same amount from the lower, and now we wait until the biopsy results are in, which will take 2-3 days.  But we were thankful for that report; thankful that there were no ulcers or tumors or anything obvious that looked abnormal to him.

Shortly after we met with him, we were paged again which meant Isaac was awake and we could go see him, so we went and waited for the nurses to bring him in from recovery to us.  He looked good.  He was sitting up drinking orange Gatorade from a straw as they wheeled his bed in.  He was much more alert than I expected him to be.

They didn't keep us long at all.  They took his vitals, gave us discharge instructions and papers, we helped him get dressed, and shortly after 3 o'clock we tucked him into a wheelchair to wheel him out of the hospital, and then got into the van to begin our drive home. 

And before we were even out of the parking lot he started throwing up.  And he has thrown up probably 8-10 times since; the entire way home and ever since we've been home.  Needless to say, it's been a very difficult afternoon and evening.  He is more discouraged than I have seen him.  He has been such a trooper through all of this; for so many weeks with so many painful symptoms and he has been unflappable, really, throughout it all.  But he broke down tonight.  And we are all so very tired.  My other kids are aching for normal, Mark and I are aching for our son and for some sleep.  Our hearts are hurting so much for the pain he is in.  I just keep praying that his body will recover from the anesthesia; that his stomach will settle, and that he will sleep well tonight.

Thank you, friends, for your prayers and for your concern.  I am so grateful for you.

~Stacy

What's going on with Isaac? [Part 5]

Well.  I do hope we can find out what's going on with Isaac. 

The Endoscopy and Colonoscopy procedures are scheduled for Tuesday afternoon.  I am praying we will get some answers then.  The doctor thinks that what he finds may explain the joint pain, but if not, then we will see someone in Rheumatology.

Updates on Isaac:

Joints: His joint pain still travels around his body-- sometimes his knees or ankles are hurting, other times his shoulders or elbows or wrists.  This week his finger joints have hurt for the first time.
BUT: This has not slowed him down much this week.  He is pressing on in play and in school in spite of the pain and in spite of having no medication for the pain.  I'll just take that as a huge answer to prayer, because my main concern coming off the Naproxen was that his body would deteriorate to the point when his joint pain was at its worst, when he was struggling to move. [Thank you, God!] 

Hives: I thought his hives were disappearing and after giving him Benadryl every 4 hours for a full week, I finally stopped giving it to him.  He had said he wasn't itchy and we saw no spots or splotches anywhere on his body.  Then last night he said he was itchy, and I had him lift up his shirt, expecting to see a little spot of red, and there were substantial splotches all over his chest and stomach and back, again.  So back to the store for more Benadryl today.

Stomach issues: His stomach has definitely been worse over the past few days, including increased trips to the bathroom, and he has had a few bouts of pain for the first time.

Sore throat: It's the strangest thing, this sore throat.  I ask him every morning how it is, and one day he'll say: "It's super sore; feels raw." Or he'll complain of it feeling "bile-ish".  And the next day I'll ask, he'll swallow and act surprised and say, "It feels fine!" But the following day it will be sore and raw again.

Appetite: His appetite is still low; he's eating very little at each meal.  A couple of times his stomach pain has prevented him from eating, and he has eaten later than us.

Today he gets to eat normally, Sunday he gets to eat low-fiber foods, Monday he gets to drink clear liquids only all day, and Tuesday: nothing. ;)  Should be an interesting couple of days.

Praises:
-He has been sleeping well at nights.
-He has been so much more mobile this week, and only once needed our help getting to his bed.
-His attitude is great.
-We have the procedures scheduled.  (It took me 2 days and several messages left to schedule these, and we were praying lots that "the nurse would call back".  She did.  Appointment scheduled.  Thank you, God.)
-Our one-and-only vehicle overheated this week (of course, right? ;)) but we have an excellent mechanic who we trust, and he was able to see it the next morning and fix it over the course of two days.
-God is good.  Always.

Thanks again for your prayers.  I will try to update again on Tuesday or Wednesday as I'm able, and hopefully with some answers to the what's-going-on-with-Isaac? question. 

Gratitude of late

a smattering of things I've been thankful for lately.... 

5508 | Isaac's great attitude through this hives trial
5509 | antihistamine, which has given relief during the daytime
5510 | book club with like-minded mamas the other night
5511 | my mom, watching the kids this morning
5512 | Sally's podcast, talking about strengthening our arms:

"Our lifetime will have many trials; our lifetime will push against the ungodliness of our character: our ungodliness, our lack of faith, our lack of knowledge.  And in that place it becomes a place where we can say, 'God, what would you teach me here? How would you strengthen my arms here?  How would you help me to live in peace here?'"

(A heartfelt yes! to that prayer.  When faced with a challenge, instead of griping or grumping, or beginning the woe-is-me dialogue I tend toward... instead asking God to strengthen my arms for *this* thing; for this task, this challenge.)

5520 | a good appointment, a thorough doctor
5521 | Michelle, walking us through this from afar
5523 | an immediate referral to Children's
5524 | Mark having the day off today, being present with the kids
5525 | Mark's insurance

5530 | having friends and family who are praying
5531 | Isaac's gratitude, several times a day: "Thank you for caring for me, mommy."
5532 | and his worry for me: "Don't worry about me, mommy.  I'm okay."  Or, "I want you to sleep well tonight and not worry about me."
5533 | his faith.  His initial statement of: "God's got my back."
5534 | the kids' prayers for him
5535 | and their concern
5536 | Mark, taking time off again tomorrow
5537 | tears and prayers with Mark
5538 | him hugging me in the kitchen today
5539 | the comfort of God's word (Ps 95) and the truth of who God is: the picture of Him as a good Shepherd, tending His flock
5540 | Audra and Isaias, collecting snails in the garden, Audra's "Snail Park", and their marble run in the dirt that she's so enthused about

Audra and her little paper-made doctor's kit

5541 | the honey that seemed to soothe Isaac's throat a bit ago

5543 | for the J's, bringing us pizza for dinner last night, and peanut butter cups for dessert!
5544 | and flowers
5545 | and my favorite- a sweet card from B to Isaac with a verse on it... Joshua 1:9, and a drawing of them playing football together.  LOVE
5546 | for the prayers of the J's, B's, friends and family.  People who care so much.
5547 | that he is moving around so much better today; that his hives aren't as regularly itchy, that his throat was better yesterday, that his appetite was back Saturday morning.
5548 | for a meal from the B's, Friday night

5551  | the ability to make and bring a meal to the M's last night to celebrate their adoption of T.  Lasagna, Caesar Salad, homemade crusty bread, ice cream pie....
5552 | finding lasagna sauce a few days ago in the freezer downstairs that made it all seem doable

5554 | all sorts of two-on-one time with Isaac on our drives to and from Seattle

5556 | solving riddles with Mark and Isaac on our drive Monday.  (actually, I read them out loud, those two smarty pants solved them while I looked bewildered and tried to keep up.)
5557 | the kindness of so many blog readers and friends-- praying and asking how Isaac is doing
5558 | tucking myself next to Ella on Monday night after the girls were all tucked into bed, and the little girls slept.  Chatting with her about her day at grandma's house and Finn and all his cuteness,....


5561 | Mark bringing me Woods coffee yesterday (!!!)

5567 | sunshine this week

5569 | morning snuggles with my Audra, and her cheerful chatter

5572 | laughter

What's going on with Isaac? [Part 4]

{photo from last month's visit to the daffodil fields}

Hello, friends~

Thank you to those of you who have followed up to see how Isaac is doing.

If you're confused at the title of this post and need to catch up, I've been chronicling this journey here on the blog.  You can click on these links to catch up: Part 1, Part 2, and Part 3.

Thank you for any of you who have been praying for my boy.  I feel so blessed.  I have told Isaac that there are people all over the nation praying for him.  The other day I was telling him that this is one of the amazing things about being part of God's family: that God's people (who do not even know him!) are praying for him, simply because you believe in God, and believe that He loves us and hears our prayers, and that you genuinely care about him because you DO love Jesus.  Thank you.  Isaac is thankful, too.

So.... our appointment was Monday afternoon with a gastroenterologist.  Isaac had been doing pretty well.  Quick update on his symptoms:

Joints: Day 11 of joint pain.  In the days leading up to his appointment, his pain had decreased for sure; he was moving easily.  He is always in pain to some degree, and the pain seems to travel around his joints, sometimes concentrated in a knee or his wrists or his ankles or arms, but overall, the pain was less.  The anti-inflammatory pills (Naproxen) the ER doctors had prescribed were helping.  He had even gone outside-- twice!  Once to sit on the trampoline and another time to try to play baseball in the yard with the other kids.  (That didn't last long.)

Hives: His hives remain.  Day 14 of the hives.  The itching has gone way down (thank you, God!) but the rash crops up somewhere on his body (usually chest, stomach or his legs or arms) each day, and during the night he'll end up itching.  We've been giving him Benadryl every four hours.


Stomach issues: We're about six weeks in to his stomach issues, now.  His stomach had recently been worse again, several trips to the bathroom and the evening before our appointment, blood in his stool.  [I think I forgot to mention this in the earlier posts, but that night that I began to be concerned about his joint pain and called my friend Michelle; the night before we made the initial doctor's appointment with his pediatrician, she had asked me to ask him if he'd had blood in his stool.  This is several weeks into his diarrhea, mind you.  And he told me yes.  Just a little something he'd forgotten to mention to me all those weeks.  He said maybe 50 % of the time he was seeing some blood.]  Anyway, since then the blood had been much less frequent, but now it was back again.

Sore throat: Six weeks of a fairly persistent sore throat.  Some days he'll say it's fine, other days he'll say it's really bad; hurts to swallow, and sometimes will complain of a "bile-ish" taste back there.  The doctors haven't seen redness or spots, and seem puzzled that his throat is sore at all.

Appetite:  His appetite has decreased significantly.  Most days he eats very little, (and will say "I just don't feel hungry."  This from a boy who LOVES flavors and food and loves sitting down to a home-cooked meal.)  Some days he seems to have a huge appetite and wants to eat, and tries to eat normally, but cannot.  He gets full quickly.

* * *

So, back to our appointment. It was a relatively quick appointment, and after the doctor asked questions and listened to how this has all unfolded, he said "there's a lot of gray, meaning that there's no clear answer.  Every doctor seems to be puzzled that there's no stomach pain, that he hasn't had any fever throughout this process, and that he hasn't lost weight.  And no one seems to have any clue about why his joints are acting up.

He mentioned "the worst case" being either Crohn's or Colitis, or perhaps some benign polyps in his colon, but said he couldn't know unless he went in and did a colonoscopy and endoscopy.  He said he would have liked to schedule those for the following day, BUT since Isaac had been on the anti-inflammatory, he didn't think he'd get an accurate picture of what's going on.

So he asked us to stop giving him the medicine and call within a couple of days to make an appointment for a colonoscopy and endoscopy next week.  He said if the joint pain had gotten worse in the meantime, he would refer us to a rheumatology specialist as well.

The last pill Isaac took was Sunday night, and he managed Monday pretty well.  He was a little sore in some joints, but able to move and walk.  (I think he's getting used to the pain, too- and a certain level of pain has become his new normal.)  Yesterday I noticed him wincing several times.  He's not a complainer, and won't offer up information that might make me worry or lose sleep.  So I have to press him a bit to find out what he's feeling: "Isaac, which joints are hurting right now?"  When asked yesterday, he admitted that his wrists were hurting, and his ankles, and one of his knees.  Last night his knee was in so much pain that he couldn't extend his leg all the way, and he had to use me for support to hop on his good leg from the living room to the stairs, then scoot down the stairs on his bum.

I will call today to schedule the colonoscopy and the endoscopy, and will also ask for an appointment with a specialist in rheumatology.  I am hoping he can be seen early next week.  I am especially concerned about his joint pain worsening in the coming days.

Thank you for letting me ramble on here about what is going on in our lives.  I know that so many of you have your own trials; your own stories of pain and heartache.  It is my prayer for you that God would meet you there, and that you might sense His presence and find His comfort in the midst of the hard.  I pray that He would strengthen you and encourage you through His word and through His people.  Blessings to all of you,

~Stacy

What's going on with Isaac? [Part 3]

Part 1.
Part 2.

Part 3:

I left off describing our night and Isaac's pain, but I want to back up a bit and talk about the mention of autoimmune diseases (Crohn's, for one) during the doctor's appointment, and acknowledge that that was obviously a bit alarming to us.  I know very little about these things and I'm probably misspelling every medical term, too.  Sorry.  Please do correct me if I'm off in my spelling or definition or understanding of anything medical.  At this point we know only that Crohn's is a chronic thing he would be dealing with for the rest of his life.  Mark had looked up some things, but my knowledge was strictly based on what the doctor had explained and my friend Michelle (my personal medical consult) had described.

Mark and I sat on the couch and cried and prayed together that evening.  My tears were because watching my son in that much pain was really difficult.  Mark was worried about all the what-if's down the road.  Mark had decided to stay home from work the next day (Tuesday) because he was very much needed in transporting Isaac up and down the stairs, and because we were a bit worried and overwhelmed.

Children's called the next morning (Tuesday, April 12) to schedule an appointment, but didn't have an opening until the following Monday.  Um, yeah.  I'm on this end of that phone conversation trying to picture Isaac in that much pain for one more week, without the okay to even take ibprofen.  So I asked to speak with a nurse to talk about pain management or anything we could do to make him more comfortable (ice? heat? elevating his limbs?  I know nothing about joint pain.)  The nurse I spoke to listened to my report on how Isaac was doing/how much pain he was in, and suggested that our primary pediatrician call the specialist at Children's to talk that over, or determine if we needed to come in sooner (via using the ER).  She gave me a phone number and an extension.

I called to speak with the doctor we'd seen the previous day to supply him with details and the phone number.  He was out but I spoke with his very-thorough nurse Becky, who said she'd give the doctor the details on how Isaac was doing and get back to me.  She called within five minutes and told me that they were sending Isaac's lab results ahead and that we should take him to ER at Seattle Children's.  Okay, then.  (Basically, I think they were just trying to force their hand to see him sooner.)

This was all kind of a whirlwind, obviously.  I had been trying to make pancakes for the kids but was interrupted by all the phone calls, and then suddenly needed to get all of us out of the house.  My mom said she'd take our other kids, so we had them pack up their school stuff and then dropped them off at her house with our griddle, the pancake batter and some lunch stuff.  Then Mark went to get gas and I showered, collected stuff for us, and we hit the road.

Isaac in the ER

We made it to the ER at around noon, and met the ER doctor, Dr Ben, who was also a very good (and thorough) doctor.  Dr. Ben checked him over, paying close attention to his joints-- pressing on and moving all of them, asking lots of questions about his stomach issues.  He also said he was leaning towards it being autoimmune, and he mentioned Crohn's, too, as well as Rheumatoid Arthritis or Lupus or something along those lines, because of Isaac's joint pain.

The supervising ER doctor came in to check him, too, and seemed a little more reluctant to think autoimmune just because there is no family history and because all of his symptoms didn't seem to line up (no fever, no stomach PAIN).  She mentioned it maybe being viral, but said she thought they'd know more "what track to go down" when they got the lab results.

The nurse came to check his vitals and gave ibprofen (!!!) and Benadryl and said Isaac was running a low fever.

Dr. Ben came back in late that afternoon to go over the lab results with us and to tell us what direction they'd decided to go.  He had been consulting with the Rheumatology specialists and the Gastro-specialists there at Children's and the rheumatology doctor at least thought it was less likely rheumatalogical (is that the right term?) and more likely a viral infection with the joint pain being a reaction to the virus.  Apparently the sudden onset of the joint pain/arthritis/inflammation is unusual; usually it's a gradual climb.

PLAN: repeat the labs, add in a couple more labs, send us home with an anti-inflammatory prescription, and wait it out for 2 weeks.  IF there's still joint pain at that time, Rheumatology will want to see him.  So basically they were at that point going down the "It's-looking-like-a-viral-infection" track, and sort of moving the autoimmune options down the list.  (Good news, I guess?)

Except that we still have no answers.  And his symptoms are still the same.  So we wait.  Our doctors here in town want us to keep our appointment for next week, so we will see the Gastro-specialist on Monday and maybe will get more answers (or be able to rule out some things?) then.   


[Part 4 is now here.]

What's going on with Isaac? [Part 2]

So.  If you're following along from Part 1, you know we're going to try to get Isaac in to see the doctor on Monday.  Monday morning his symptoms (diarrhea, sore throat, hives, joint pain) were pretty much the same, and he had also woken up with really swollen, puffy eyes.  He looked like he had two black eyes, with swelling across the upper part of his nose, sans the bruising.  Mark had been carrying him up and down the stairs, and he needed help even to roll over in bed, because his hips were in so much pain.

Handily, Monday was Mark's day off, which means he stays home with the kids and does school with them and I get to have a break.

I went to a coffee shop and journaled.  I read Psalm 95: 1-7, which brought me such comfort his past summer when I was dealing with some health issues:

Come, let us sing for joy to the Lord;
    let us shout aloud to the Rock of our salvation. 
 Let us come before him with thanksgiving
    and extol him with music and song.

 For the Lord is the great God,
    the great King above all gods. 

 In his hand are the depths of the earth,
    and the mountain peaks belong to him. 

 The sea is his, for he made it,
    and his hands formed the dry land.

 Come, let us bow down in worship,
    let us kneel before the Lord our Maker; 

 for he is our God
    and we are the people of his pasture,
    the flock under his care.

and I prayed through that passage prior to the appointment, trusting in Him, our great God and Creator of all.  I love that last part about how we are the people of His pasture and the flock under His care, and I know that He is trustworthy as our Shepherd during this time of uncertainty.

* * *

[Confession: I don't love taking my kids to the doctor.  My experience with doctors hasn't been great. Ideally, I think physicians should know their stuff, and be able to explain and define things well (and especially to a child; I think it is so important to communicate to a child what is going on, what this is I'm doing and why, etc....), should listen well to the patient/parent, taking time with them and asking questions, they should genuinely care and have compassion, and they should follow up.  (Am I missing anything?)  This just has not been my experience, save one doctor ever in my life.  So I end up frustrated with most visits to the doctor, feeling like a number instead of a person, and disappointed that they seem to be light on the listening and heavy on the prescribing of drugs and getting you out their door.]

Isaac's list of symptoms.  

 

So I was prayed up going in to our appointment.  Isaac had written out a list of his symptoms to discuss with the doctor.  We saw a new-to-us doctor (because our "regular" pediatrician wasn't in), and I was pleasantly surprised.  He took a lot of time with Isaac, asked good questions, listened well, talked through each symptom at least once, and just seemed very thorough over all.  He ordered up some labs (blood/stool) and patiently talked over some of his concerns with us.  He seemed primarily concerned about the stomach issues and joint pain.  He had checked Isaac's joints, which were "hot" or warm even to the touch.  He talked about it being either (A) an infection or (B) an autoimmune disease, like Inflammatory Bowel Disease, or Crohn's Disease.  He consulted with a specialist and then ultimately referred us to a Gastroenterologist (sp?) at Seattle Children's hospital.  I called my pediatrician friend from the doctor's office for my own consultation, and she confirmed that she thought they were checking out the right things.

We remained to get the lab work done, and then slowly made our way home.  (I say slowly because at this point Isaac is moving like he's a 98-year old man, very slowly, cautious with each step, because every movement is painful. We made it home and settled him on the couch.

That evening the doctor called us (follow up!) and had spoken with someone at Children's and had gotten some of the lab results back (and they didn't point to anything conclusive).  His loose diagnosis after talking with Seattle was the autoimmune possibility (IBD which includes Crohn's is what he mentioned, again.)  Also, he didn't want us giving Isaac ibprofen for pain until they figured out what was going on with his stomach.  And he assured me Children's would call first thing Tuesday morning and hoped we could be seen within 1-2 days.

Monday evening was a REALLY rough night.  Isaac could barely move, and with each movement he was wincing from the pain.  He asked for help to move his arm, roll over, and to bend his knees.  He needed help up from the couch.  Mark was carrying him up and down the stairs.  His throat was really sore, and his hives seemed to be settling down, maybe?  Less splotchy, less itchy.  Still diarrhea, with the gel-like stuff going on.

I couldn't believe how quickly his body seemed to be deteriorating.  It was surreal to watch him now in comparison to the running/laughing/climbing boy he was just days before.

It was really difficult for me to see him in so much pain.  He was a champ, and was more worried about how worried I was for him than he was for his own self.  He kept reassuring me and telling me that I didn't need to worry, that he would be okay, and that "God has my back, mommy.  I'm okay, really."

We barely slept that night.  I set the alarm so that we could check on him every two hours, and Mark and I took turns checking in.  He was awake every time we checked in on him but once.

* * *

[This is getting so long that I'm posting this and moving on to writing Part 3.]

What's going on with Isaac? [Part 1]

I have been waiting for a window of time to be able to sit and write about our Isaac (12), and some of the health issues he's been facing over the past month, but particularly this past week.  It's early in the morning and the kids are still sleeping, so I'll snatch this moment.  (If you aren't fond of medical details, you may not want to read beyond this point.)

More than a month ago, Isaac mentioned that he was having diarrhea.  I'd noticed his frequent trips to the bathroom and we tried to pinpoint together when it had begun.  I figured it would work it's way through his body and he'd be fine.  A couple weeks later he made a comment about it being "weird diarrhea".  "Weird" meaning clear, gel-like diarrhea, and he was going 4-5 times a day.  I'd never heard of that, and I agreed that it was strange, and I had a niggling concern.  (Apparently sometimes there was "regular diarrhea" with it, but every time there was this "weird diarrhea" going on.)  He talked about a churning sensation in his stomach.  No pain, but definitely nausea, and while he felt sometimes that he would throw up, he never did.  We prayed lots at our house for Isaac's stomach, I told him to eat yogurt (for probiotics) at least once a day, we tried to avoid certain (spicy) foods, and I began asking him more about it, and generally paying more attention to his body and what might be going on.  I did notice a decrease in his appetite, but for the most part he seemed normal.  Right around the same time as the diarrhea began, he also complained of a persistent sore throat, but had no spots, no fever, and he was still eating and drinking (though wincing sometimes as things went down), and some days it appeared to back off and not bother him at all.

As of a couple of weeks ago-- so maybe 3 weeks out from the original mention of diarrhea-- Isaac's trip to the bathroom had decreased to maybe 2x/day, and we thought things were settling down.  It was then that he was hit with a cold.  Runny nose, (no cough) and his eyes were gunky in the mornings.

Last week Wednesday (April 6), he woke up with hives.

Day 2 of hives

So I spent a few days trying to determine what had triggered the hives.  He's only had hives one other time in his life: several years ago after a camping trip with Mark, his uncles and cousins, and they had all come home complaining of the mosquitoes.  At that time I chalked it up to a reaction from all the mosquito bites.  He wasn't itchy that time.  So fast-forward to last week, after writing down all the food he'd eaten and ruling that out, I settled on it being either a reaction to some sort of insect bite, or a reaction to some new soap (licorice) of Ella's that Isaac had used in the shower. And I got him an antihistamine and we rubbed aloe vera on his skin (his preference, over Calamine lotion, Caladryl, and hydrocortisone cream).

Right along with the hives came plugged ears, and general pressure in his ears.  I put some mullein/garlic drops in his ears, and paid closer attention to that, watching for pain, fever, etc.   (Poor kid, huh?)

His hives were awful, he wasn't sleeping, his throat still hurt, he was still having diarrhea a couple of times a day, and he had a cold.  Isaac's a really easy-going kid, and he's not a complainer at all, so his spirits were good.  He just kept taking one thing at a time and assuring me that he would be fine. 

On Saturday night (April 9), I went to check on him at bedtime- asked him to hop up so that I could see his hives--  and he said he couldn't get up.  Huh?  He explained that when he and his siblings had watched a movie earlier, he had sat in a certain position the whole time (the way all kids sit, on their haunches, but leaning on his arms, apparently) and that since then his joints had been hurting.  Particularly his ankles and wrists and shoulders.  He did get up- struggling to do so- and sort of hunched forward so that I could see his hives.  I aloe-d him up and he went to bed.

The next morning (Sunday) he walked like an old man.  Slowly, with careful movements.  He still had hives but thought they were better (less splotchy that morning, not as itchy as they had been.)  I thought he should stay home from church, but he wanted to go.

Sunday night: It was family night and we were going to play a game, and he could barely get to the table.  After one game, I turned to him and started asking him about his joint pain.  (At this point I'm thinking there's NO WAY we can still chalk this up to a weird position he'd sat in the night before.  He's a healthy boy, and sits that way all the time.)  I looked at his wrists, they looked red.  I asked him to put his ankles into my lap, and one was very swollen, and they were both red (and his feet looked purple).  I tried to look at his knees but had a hard time because I couldn't pull his pant legs up easily, so I asked one of the other kids to go get him some pajama bottoms and asked Mark to help him to the couch so that I could look at his knees better.  They also seemed red and swollen.

This was the first time I became concerned that maybe all these symptoms were related somehow, and the pain he was having moving really troubled me.  I called my friend Michelle who is a pediatrician, and tearfully filled her in.  She encouraged me to get him into the doctor the following day to try to get some answers.

[Part 2, in which we see the doctor, and spend a day at Children's hospital, coming just as soon as I can type it]

Book list for a 13-year old girl

I told Ella to grab some of her favorite books over the years 

and take some photos for my blog with her camera.  

She did a great job!  

Ella, now 14, loves to read and is great at writing down everything (or nearly everything) she's read, as well as writing either a narration or a book report for them.  Last year she recorded 85 books, and rated each of them from 1-5 stars, five being her very favorite books. 

We went through her list together and I have listed for you all her 5-star books for you, here:

Jane of Lantern Hill by L.M. Montgomery

The Invisible Wall by Harry Bernstein

Unbroken by Laura Hillenbrand (she read the young-adult version)

 The Little White Horse by Elizabeth Goudge

Bruchko by Bruce E. Olsen

A Way Through the Sea by Robert Elmer

  Anne of Green Gables (entire series)- by L.M. Montgomery

The Thieves of Tyburn Square by Dave & Neta Jackson
Imprisoned in the Golden City by Dave & Neta Jackson
Listen for the Whippoorwill by Dave & Neta Jackson
A Titanic Journey Across the Sea by Laurie Lawlor
West Against The Wind by Liza Ketchum Murrow
The Mitchells Five for Victory by Hilda Van Stockum
Canadian Summer by Hilda Van Stockum
Friendly Gables by Hilda Van Stockum
Beyond the River by Robert Elmer (also Into the Flames, Far from the Storm, Chasing the Wind, A Light in the Castle, Follow the Star, Touch the Sky, all by Robert Elmer)
Amelia Lost by Candace Fleming
Enemy in the Fort by Sarah Masters Buckey
Cupcake Cousins by Kate Hannigan
Summer Showers by Kate Hannigan
Elise the Actress by Norma Jean Lutz
Young Music Makers by Ireene Wicker
Ten Little Dutchmen by Grace VerHoeven
Jotham's Journey by Arnold Ytreeide 
Bartholemew's Passage by Arnold Ytreeide
Tabitha's Travels by Arnold Ytreeide
A Garland for Girls by Lousia Mae Alcott

Some of these are re-reads, and some of them she would admit were a little "young" for her, but she doesn't mind that so much.  

I am also formulating a post on choosing good books for your teen daughter, and I will try to finish that soon!  Also, some book lists for boys are in the works.  (Although my boys are good readers, they don't always write down the books they've read.  So this year I smartened up and bribed them.  For every 20 books they've read and written down the titles of, they get a DQ treat.   So far that's working, so I have book lists for my boys coming your way.  ;)