Tuesday, February 19, 2008

Kawasaki Disease, One Year Ago

While in the middle of a 4 day hospital stay during Will’s case of Kawasaki Disease in Feb '07, I recorded the following thought: “This humble, grateful frame of mind is a good place to be. I’m hoping and praying for it to last in me.” My current gratitude for good health is intensified as I remember times less fortunate…

After 4 days of various symptoms including headaches, lethargy, & neck pain, Will woke up the day after Valentines day with a rash like I'd never EVER seen. I still regret not taking a picture of the geographic, beet colored pattern that covered most of his body. (If I had a pic I'd post it to demonstrate the severity!!) He tested positive for strep and was eventually given a steroid to fight the rash. For the next few days his head/ neck aches persisted as did his lack of energy but he ate and slept fine which caused us to try and wait out whatever was infecting him. On Sunday night (Feb. 18th) I gave him a rice bag and he was ready for bed at 7:00 pm. A few hours later we gave him tylenol and a blessing (his 2nd for this illness).

I now quote from my journal during that time:
"It was in the middle of that night that more alarming things began to occur within his body. Around 1:00 he awoke complaining of neck, elbow, back, ane even hand pain. I applied heat and waited to see if he’d fall back asleep which he did for about an hour. He then began to complain of a stomach ache which made me take him to the bathroom. In there John and I took his pants down and tried to make him sit but he couldn’t- his knees were too stiff and swollen.

This alarmed and confused us and we weren’t sure what to do. He limped to his room but couldn’t climb back up into his bed.

We gave him Tylenol and he fell back asleep until about 8:00 am when I tried to give him breakfast and got him dressed to head straight to Dr. Whiting’s office.
My younger sister Kimi was supposed to have been coming for a visit that day but had decided to catch a midnight ride up north with my brother because my mom told her it is fun to be there when the kids wake up. This is how I feel about her early arrival:

“And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I , the Lord God, do visit my people in their afflictions.” (Mosiah 24:14)

I recorded more about the ensuing events in Wills journal but basically it became a diagnostic challenge. Dr. W. said rheumatic fever. Mom broke down- although I did already have that possibility in my mind due to what I’d read in the middle of the night prior. He said Will would need to go have a heart test at Primary Ch. And possibly stay a few days “with as sick as he’s acting.” …

Earlier that month when the family got sick, I'd had a selfish feeling that I have often before had- I was annoyed at having to “cancel my week.” Again. (Tending, volunteering at school, visits for RS, meetings, mid-morning aerobics, playing with friends etc.) Just making all the necessary calls and feeling like I was dropping the ball again and not reliable was the worst, I thought. I didn’t mind caring for my kids and having uninterrupted time with them and taking it slow with nowhere to go. As long as I got my exercise I was fine. It was just the initial inconvenience that was bothersome. But at that time their conditions were manageable and suppressed with things like Tylenol, cold medicine, chocolate milk, cartoons, naps and hugs.

Now nothing like that puts a dent in Will’s pain, swelling, or discomfort. I am so grateful for those who have chosen to go into the medical profession and learn what it takes to treat so many complicated diseases etc.

Some sad things:
- On Sunday Will said he just hopes he’s better before Saturday so he didn’t have to miss Hayden’s birthday party. He got the invite last Sat. the same day Michael Udink had his party which we had to miss.
- Watching the IV be put in in the ER- He’d say things like “No way. No way. We are NOT doing this. That’s enough!” But he had not even enough strength to pull his arm away- let alone fight to stop it.
- A volunteer came by offering William a Hospital BINGO card. Peggy and I were excited about it but Will, in his low spirits told the lady “I have a bad arm,” meaning he couldn’t function well enough to play. I ended up just marking the card for him.

Truthfully once we found out the illness was probably self-limited (going to end), and that his heart is OK, the emotional burdens began to lift. As hours and days have passed we have seen little bits of progress- today being the most marked day of improvement (mobility in left hand/ arm/ elbow, able to hold and drink from water bottle and push bed moving buttons, played with toys in “Forever Young” playroom)

At the beginning of it all he just wanted to go home but today he commented that he likes it here- MOVIES galore, large food selection, balloons and gifts from loved ones, Mom reading stories to him… I have to admit it has been enjoyable time in the way of bonding with my son.

The words of “Come Come Ye Saints” have found new meaning to me:
“Tis better far for us to strive, Our useless cares from us to drive.”
When you stop occupying yourself with hair styling, aerobics, TV shows, the cars, the yard etc., your mind is freed to think about what you believe in and where your faith lies- how you explain life’s events and take them as learning experiences.
Also the words “And should we die before our journey’s through… we then are free from toil and sorrow too.” The best part about dying – getting RID of the challenges of mortality and waiting for the day when spirit and body re-unite in a perfect form.

I have tried to let William know during this process that Jesus knows how he feels when he is in pain.

There comes a point where the arm of flesh and the finite mind are not enough to rid one of anguish. During times of uncertainty- like when Dr.s weren’t agreeing on the diagnosis and Will was laying here partially paralyzed- the only place to turn was to God. The constant giver of guidance, peace, and reassurance.

I know Heavenly Father’s hand supported us through this trial. First he sent us Kimi to tend Cara and Desi while I took Will to the Dr. and PCMC. God’s love has been manifested to us through the actions of other people. (Balloons, gifts, calls, visits) We exercised our faith by continuously praying that Will would get better and John blessing Him to do so.

The Dr.s were guided. First Dr. Bonsack was “luckily” on-call for President’s Day. Later- he came in just before going home to discover tat the IVIG dosage was 15 TIMES TOO LOW (saved us hours)

When Lindsay and I took Will on his outing we were passing by a mural and had to stop for a longer look. It was a white 3D depiction of Christ ministering to Children from all over the world. I bore my testimony to Will that he can heal you. Even when you think you’re not going to get better he knows how it feels and he can work miracles. He is healing William now.” ( Thurs. Feb.22nd, 2007)


Howling Pickup said...

You are such a wonderful writer and so good at expressing your feelings. Thank you for sharing that experience with us.

Samantha said...

Oh Julia, I am sitting here in tears. I cannot believe how much your sweet boy (not to mention your whole family) has had to endure. Thank you for sharing your thoughts and testimony. Your strength at such hard times is both amazing and inspiring. Our prayers are with you all! Let us know if there is anything we can do! Hope to get to see you this summer! It has been too long!

Samantha said...

PS - I didn't comment on your last post and wanted to say how big and beautiful your kiddos all look!! Glad you are all good! :)

Leah said...

WOW! Thank you for sharing such a trying time with all of us! You set the best example to me of what I need to be in a mother!

Nicholas K. and Sarah Maye said...

What a sweet experience. Hard, but sweet. I just listened to Pres. Eyrings talk about writing down seeing the Lords hand in our lives. You are a good example of that!! You are such a great writer. Reading it made me miss William even more then I already do. (as if that were possible) I remember calling Will at the hospital and he didn't even want to talk to Nick. Thats when I knew he was still really struggling. Does he still have the drawing of the motorcycle Nick did to remember Kawasaki? Love you! -Sarah

Jewel said...

Yes he does still have the drawing as he is sitting on the cycle waving goodbye to the disease!
By the way, for those who haven't seen Will in a while, he is active and vibrant and in great health.

Cara said...

Julia, Thank you for sharing! You are so inspiring to me and everyone around you. It's so good to see Will doing so well.

Andrea Brown said...

Note to self: Do not read Julia's blog while at work.

Teary eyes, and chills, need I say more?

The Whitehead Family said...

Thanks for writing. You are awe inspiring! I couldn't ask for a better sis-in-law. Love you and Will.


The Whitehead Family said...

Thanks for writing. You are awe inspiring! I couldn't ask for a better sis-in-law. Love you and Will.


wendipooh13 said...

wow I can't believe it's been a year already.. you are such a great writer and am sooo impressed with your journal keeping skills, I really need to improve on mine...

McAllister Fam said...

What a touching journal entry. It is so true that the Lord heals us. Thank you for the inspration and I am glad to hear that Will is doing well.

Debbie said...

Julia, Thank you so much for sharing that. I had no idea Will went through all of that. You are such a good example on keeping a journal. I need to do better. Lately I've been forced to realize once again what a blessing good health is.