Thursday, September 1, 2011

What a whirlwind!

Last week was a complete whirlwind.
One of those experiences you come out of and say,
"Wow! I can't believe that just happened!"
Amanda D. and I took the kids to the zoo on Friday. Friday night my mom came into town to spend the night with us. Saturday Dana and Abby were in town from Arizona and my in-laws were celebrating their 40th wedding anniversary. We had a BBQ that day and Brayden moped around a bit, not very energetic, but I figured he was just tired from our zoo trip the day before. As the day progressed, he seemed to be feeling worse and by Saturday evening he began vomiting. This continued all through the night and by early Sunday morning he was miserable and complaining about pain. I was not surprised after the night he had had and I was worried he was becoming dehydrated. We've been parents long enough to sense when something seems a bit off. This was one of those times both Darcy and I felt that something just wasn't right and we decided to take him into the ER at Troy Beaumont hospital that morning. He was admitted and Sunday grew to be a day of severe abdominal pain and repeated vomiting. No fever. They took X-rays and ran a few tests and thought he probably just had a virus that needed to run its course. I had never seen a virus like this before.
Darcy spent the night with Brayden. In the morning, I was surprised to hear that Brayden's conditions had worsened over night and his pain had become more severe. He was up all night retching and writhing in pain. I rushed to the hospital and wasn't even there 10 minutes before I was stricken with worry and heartache over seeing my boy so miserable. It wasn't right. They gave Brayden morphine when he was first admitted, but couldn't give him anything stronger than Motrin after that first dose. It clearly wasn't working. Crying at the nurses station, I begged for answers and relief for him. They agreed that with a virus, come day 3, Brayden should be showing signs of improvement, that there shouldn't be so much pain associated with such a virus and the vomiting should have ceased. His blood pressure was consistently high and his pain seemed relentless. He was crying out "I'm in terrible pain! This is too much pain! Too much pain!" At one point he was screaming, "Help! Help! Someone help me! I give up! I give up!" and asked me if he was going to die. These bouts of pain were too frequent and had been going on for over 24 hours. A GI specialist came to see him and they all decided that Brayden needed to be transferred to a higher care setting. Monday morning we rode in an ambulance to Royal Oak Beaumont's Pediatric Intensive Care Unit. They gave him one more dose of morphine before we left and this made him momentarily more comfortable.
And it's here we began a series of tests trying to figure out what was wrong with our boy. More X-rays, an Upper GI, a CT scan, and an
esophagealgastroduodenaloscopy.
(yes, that's one word...i made the nurse write it down for me and told her it was worse than
supercalifragilisticexpealadocious!)
I can look back and smile about it now, but at the time, we were all very worried about Brayden. This was by far our worst parenting experience ever. No seven, almost 8 year old should be in so much pain that they need to be on morphine every 2-3 hours for 3 days straight. And with no answers as to why, I was growing increasingly frustrated. I felt like it was taking too long to order the tests and that I was getting conflicting information from various medical staff. It honestly felt like we were on an episode of "House" where there was a team of doctors around his bedside discussing possibilities, scenarios of what he could or could not have, and what to do next...
Tuesday morning I tried to stay calm but expressed my frustration and worry.
They explained to me that some of his tests had ruled out a lot of things, such as appendicitis, obstruction, malrotation, Kawasaki disease, etc. It was then that they told us they thought Brayden may have something called
Henoch-Shonlein Purpura.
HSP is basically a self-restricting vascular disease. There are three characteristics that go along with this condition: 1) rash 2) abdominal pain 3) swelling of the joints and arthritic pain. Over time, the worse case scenario is kidney failure.
They said Brayden had a typical atypical case...that no two cases ever presented themselves the same. Over 95% of cases include the rash. Brayden did not have a rash. But, only 56% of cases present with a rash as the first symptom, so they kept checking his body to see if there were any developments. They did find blood and an ulcer in his stomach, which is not uncommon with retching. They also found fluid around his kidneys, stomach, liver and hip (which supported the inflammation/vasculitis characteristic of this disease.)
Another possibility was that Brayden had an intussusception (when the intestine collapses inside of itself...think of a telescope that collapses. the intestine gets ahold of another part of the intestine, latches onto it and pulls it inside itself.) It can cause a lot of abdominal pain, almost like contractions in childbirth. It also can resolve itself on its own. After the CT scan, they saw swelling of his intestine in an area, but not enough evidence to suggest an intussusception. And, an intussusception at his age could suggest lymphoma.
On Wednesday, I finally felt like I was beginning to get my boy back! He was sitting up in bed, alert, carrying on a conversation, and going 5 hour stretches with no pain medicine. I saw a spark back in his eye and all he could talk about was food! He was affectionate and smiley and it thrilled me to pieces that my son was getting better. We had prayer warriors from coast to coast and I know that the Lord heard these prayers and answered them quickly. I felt His presence there, and despite the worries and possibilities, there was a peace He gave me during this time.
Wednesday was pet therapy day and we were tickled to get to meet a sweet little mini 12 year old dog named "Patty." We also played 4 games of Uno (he smoked me in three of them),
a partial game of Monopoly (he was still getting really tired and needing breaks), and we built 1/2 of a Lego ship. To see Brayden comfortable and relieved from pain brought such joy and thankfulness to this mommy's heart.
Wednesday afternoon they gave Brayden the "go" to take a walk.
Freedom! (and a temporary break from all the tubes,wires, machines and monitoring)
This was a happy day.
And a very happy Mama.
Thank you Lord,
for hearing our cries.

Brayden played for a little bit in the children's garden center play area...
but quickly grew fatigued and needed to be carried back to his room.
I didn't mind. ;)
After his scopes, he was given the clear to eat...
AND they said that if everything looked good and he could keep his food down and his pain was under control, then we could go home the next day!
Over the 5 days Brayden was in the hospital, we had many visitors, helpers,
texts, phone calls and emails. Words really cant quite describe the gratitude my heart feels for everyone who supported us and stood mighty in prayer during this time. What a service and blessing this was to our family. I've always believed in the effectiveness of prayer, but to experience it in this way was powerful.
It's agonizing to see your child in pain and to be helpless. So many times I just wished I could have taken it all away from him. I would've in a heartbeat.
My focus was completely on my son and getting him well.
(but i sure did miss my girls)
Thursday was Berlyn's 2nd birthday. I had to cancel/postpone her birthday party that day and we set up shop in Brayden's hospital room to celebrate. Here we are blowing out two candles that stood in a cup of ice cream.
Happy Birthday Yummy!
And wouldn't ya know she was given the BEST birthday present ever...
A healthy brother coming home!!!
***(At discharge, the HSP diagnosis was still the forefront of the doctors opinions, although not definitive. Brayden will be followed up. However, something in my spirit tells me he does not have this. Perhaps it's denial, but I do believe it's a peace the Lord has given me.)
It was definitely an evening of celebration.
Which included a "Frosted Flakes" dinner,
a store-bought Kroger cake,
(picked up on the way home from hospital)
and gifts purchased the day before in the hospital gift shop.
Life doesn't always go as planned.
But sometimes things happen and it helps us to see the beauty and importance in things that truly matter. Life. Family. Love. Relationships.
It also gives us an opportunity to glorify God,
for us to depend and trust in Him completely,
for Him to shine through us and others,
and for Him to demonstrate His love and sovereignty.
He is faithful and good.
There is no word in the dictionary that can adequately define who and what God is.
My mind cannot fathom.
My lips cannot articulate.
But my heart feels it, knows Him,
and is full.
Father, Healer, Friend.
Thy hope, thy confidence,
let nothing shake!

Again friends,
REJOICE WITH ME!

4 comments:

  1. Rejoicing! So wonderful to see that smiling little boy's face at HOME with his family! So proud and amazed at how well you handled this whole episode with Brayden...I am not sure I would have been so calm and positive. That truly shows the Lord working through you and giving you strength and peace. Beautiful post, beautiful family, beautiful LIFE!! Love you tons...miss you tons...give those little munchkins some big hugs and kisses from us!

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  2. So thankful Brayden is doing better! Perspective is wonderful thing to really appreciate the simple things. Not to say we don't appreciate those things normally, like love, relationships and health, but it seems your perspective is different when you go through something such as this. God is faithful and I am so thankful He remains so! Love you guys!

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  3. Looking at ANYTHING from the other side it is easier to see the good. And, it is SO hard to see any good when you are in a situation like this, but from the outside looking in, God was visible in your spirit and your words and in your hope. I love you guys so much and am SO thankful that Bray is doing so much better. PRAISE YOU LORD!

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  4. So glad Brayden is better, how scary for your whole family to have him ill. Hopefully this was just a fluke and he will not be bothered by those symptoms again. Have fun moving into your new house, can't wait to see pics!

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