Thursday, April 28, 2016

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.  

IMG_2781
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


Tuesday, April 26, 2016

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

Saturday, April 23, 2016

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. 

Thursday, April 21, 2016

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
IMG_2685
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,....

IMG_2689
5561 | Mark bringing me Woods coffee yesterday (!!!)

5567 | sunshine this week

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

5572 | laughter

Wednesday, April 20, 2016

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

IMG_1009
{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