Thursday, April 24, 2014

Shock to my system

It was going to happen eventually, and I'm just happy we had six great months before Caleb was back in the hospital.  Last Wednesday, Caleb had his fourth (or was it his fifth?) biopsy and heart cath since his transplant.  And on Thursday, we got the first unfavorable report we've gotten in all that time.  Our doctor called us and explained that because of Caleb's recent illness (he had a cold that became a raging ear infection and he was incredibly sick for days), his immune system was out of whack.  They wanted us to bring him in right away for a 3-day hospital stay that included two rounds of a treatment called IVIG.  Fortunately, there was still no sign of rejection, but it didn't stop me from feeling like I was back on shaky ground.  When we got off the phone with the doctor, after being told Caleb needed to arrive the next morning, Daniel said, rather poignantly, "You know how people shove their dogs' faces in their own poop when they poop on the floor?  I feel like someone is shoving my face in a reality I want to pretend isn't there."  Well... that's one way to put it.  We laughed, but in all seriousness, I felt my confidence start to crumble.  We scrambled to make plans... what were we going to do with Lucy?  Jonah?  Who was going to stay at the hospital with Caleb, and what plans did we need to move around for this unexpected trip? All things considered, we pieced together a good evening with our kids and went to bed with a, "Alright, let's do this, whatever 'this' is going to be" mindset.

It was very bizarre to check back into the Heart Center.  We had quite a welcome, lots of people coming to hug us and say, "I'm so sorry you're here, but it's so good to see you!"  It wasn't that bad at all, other than when Caleb had to get an IV and it took FOUR tries, poor guy.  He was understandably super upset, but then when each attempt was over, after just a few minutes, he was right back to his happy self.  What a kid. 

We did our thing and moved into the room.  The boys would ride the cars around the hallways, with Caleb attached to his pole again, and it would have felt like deja vu, except that we've added a baby to the mix.  Lucy was a champ, she would take naps in Caleb's room and allow us to pass her around.  We made it work, with a healthy dose of fun and optimism, just like we always do.  I decided to stay in Caleb's room, Daniel took the other two kids back to the RMH to sleep at the end of each night, and things went pretty smoothly.

But... I couldn't keep this nagging thought out of my mind... it's always going to be like this.  We will always have hospital stays and we will always be uncertain about Caleb's wellbeing and future.  We will always have to watch our son try to be brave for procedures and pokes.  It might be months and months of being able to almost forget about reality, but we will be faced with it again at some point.  I just kept thinking, let's get out of here and get some good news and go back to Caleb being fine and life being good.

Then on the second night, Caleb got sick.  He woke up crying of a headache and vomited in his bed... a lot.  And he puked on his IV dressing, so we had to change that, and his bedding and everything.  He had a fever.  And when I called Daniel to tell him, very unfortunately he said he had just gotten sick.  So he had to stay away, just in case they happened to have different things.  We didn't even know if Caleb could finish his treatment or what.  It was such a LONG night.  He was scared, and upset and just wanted me to hold him.  He just kept saying, "I want to go home, Mommy", and I didn't know what to say because I had no idea what the doctor was going to say about this.  And so we spent the whole night, just the two of us, snuggling in his little hospital crib with him whimpering off and on.  And I had a lot of time to just lay there and think.  TOO much time to lay there and think, because as I sat there in the dark and quiet room, the old pain of coping with Caleb's heart crept back in.

I thought about how we were missing Easter weekend entirely.  How Lucy wasn't going to get to wear her cute little First Easter dress, and we weren't going to be able to go to church or hunt eggs or any of it.  And that old feeling of being robbed came rushing back, that feeling that other people are out there, living their carefree lives, waking up and taking pictures of their families all dressed up, kids eating their Easter candy and enjoying a gorgeous, sunny weekend.  And we are in a hospital room.  We are stuck in this hospital room, yes, but more than that, we are stuck with this life of having a "sick" child.  I tried to sleep, to push these feelings away, but I couldn't.  I just laid there in the dark, all night long and well into the next day, as Caleb just wanted to sleep and keep the lights off. 

The transplant team, when we called them in the morning, were actually not concerned about Caleb's symptoms.  Turns out, the treatment can make people sick, and more susceptible to viruses.  They finished the treatment and Caleb seemed to feel better by the afternoon.  We were discharged around 5:30 pm.  On the way home, I asked Caleb what he wanted to do when we got home, and he said he just wanted to take a bath.  So he did, and went to bed.  It was so good to see Jonah and Lucy, I had missed them so much even though it had only been a day since I'd seen them.  Hospital time is just so much slower than regular time.  Poor Daniel was still sick and spent the evening in bed, and it may have been the most exhausted I've ever been, coming back from that hospital stay, on no sleep, jumping right into being a mom of three needy kiddos.  But we survived, and by Monday, everyone was feeling much better.

Now we go back on Tuesday for blood work, to see if the treatment did what the doctor hoped it would.  The team was confident that it was effective, and that will be that.  I haven't been worried, I trust them and assume the next bit of news will be a good report.  Still, my bubble was burst a little, and this experience brought up a lot of old feelings that I had just not had in months.  It's like coming down off a high and having to face something I would rather pretend isn't there.  But you know what, now that I've had a few days to process this, I don't think it was entirely bad.  Of course, we all want to avoid thinking about painful things, and we want our lives to be happy and easy.  But that isn't real life.  There is a lot of hurt in this world, and I don't want to close my eyes and pretend it's not there.  I want to embrace this life, all the pain and all the joy right next to each other, with my eyes wide open.  This recent hospital stay was like a shock to my system, but a good shock, because I feel like this season of my life, these six months of resting and recovering, is coming to an end.  It's time to start listening to God, and making myself available to Him for stuff OUTSIDE of this house.  I have been through a crazy journey in the last couple years that has given me wisdom and strength that needs to be shared.  For the last six months, we have hunkered down, focused on healing and adjusting to our new normal.  Now, I feel like God is saying, "Alright, now it's time for more new things."  I don't know what that means at all, but I know that I am ready to listen to what He wants me to do with my time and energy.  

I'm listening, Lord.  My heart is sensitive to you, to your leading.  I am ready to see what it is you've been preparing me for all this time, through all this suffering.  I know that you have lots of purpose for the things you've brought me through, and I'm open to wherever you would lead me.


  1. Something you said here reminded me of a sermon I heard once about suffering. The minister explained something to me at one of the lowest points in my life. A point where I was losing faith and hurt because I didn't understand how god was letting me experience so much pain both physical and mental. He told the service, but I felt like this message was for me in specific. God lets us know what suffering is, so that one day we can help someone else. He teaches us how to endure, so that through us as his vessels we can share that message with someone else when they need it the most. Sometimes that person may be ourselves. I remembered those words when I started to ask myself why me when Alex was born early....but I quickly found myself reaching out a helping hand to others because I knew why me. I knew in those days that no matter what happened...I wanted to be someone elses rock because I already knew the answer to the ultimate question...why does god let us suffer. Lately Ive been asking myself that again because Im struggling to accept new limitations...I feel robbed because I can't lift or take care of my own son. It has been almost 5 months since I last picked up my own child and Im terrified I wont be able to ever again. So I have found myself asking why...what god would bless me with such a miracle and the rob me of so many special moments...why does he let me suffer. You just reminded me why. So that I can help others. Sorry if Im rambling...lack of sleep, muscle relaxers and pain killers make lucid dialogue difficult at times.

    1. You aren't rambling, Michelle, you are right on. God comforts us so we can be a comfort to others, and it's exactly what I'm talking about. I want God to use me to bring hope and peace to other people who are at their lowest, like you and I have been on so many days. I will be praying for you, my friend.

  2. I love your transparency... our lives are in God's hands, our hairs are numbered. Our purpose here is to preach Christ, live our lives, preach Christ, to have joy in our suffering because He lives, preach Christ....I. am studying in Philippians. 1:12 what has happened to me has really served to advance the gospel
    1:14 be encouraged to speak the word of God more courageous and fearlessly. 1:20b-21 so that now as always Christ will be exalted in my body whether by life or by death, for to me, to live is Christ and to die is gain. Katie, remember you are the Lord's handmaiden, you are highly favored and handpicked by God for this journey you are on and all of life is for His glorify God and offer Christ to a hopeless world...praying for you

  3. So glad to hear you claiming His strength during the difficult times. I hope all is well again at your house! I will continue to pray for all of you and appreciate the updates - good and bad. When Andy was a little guy and had to have frequent bloodwork drawn at Riley he became quite fearful and it became an ordeal. A tech in the MRI lab gave me a couple small tubes of xylocaine cream to put on him 30 min before a blood draw or IV start. It made such a difference and I've always wondered why they don't automatically use that at a children's hospital for every child every stick. You might ask about that. Love you guys.

  4. Katie, one of your callings is Writing. You have a talent of showing positives to gut wrenching, life altering events. Writing, sweetie - I think you should pursue it. Love you and your precious family dearly.

  5. I agree with Kristy. What a writer! May God guide, bless and grow you in this area. We'll keep praying for all of you.

  6. I have healthy children and healthy grandchildren and no, I do NOT know what you and your family deal with daily. I DO know where your strength, comfort, support, compassion, and focus for each new up or down is God. He knows all these things daily and I am so very thankful that He guides every new "thing" that you face. My prayer has always been just that...for God to guide you and I know as He guides you, each and every step does prepare you for His greater good. Everyone of us who have shared in this journey can't help but feel God. And Katie, you, Daniel and your loving family ARE the spark the brings each of us into His light. I thank you for that...and I continue to pray God's guidance. Your family (the whole Barlow and Cox bunch!!) have always held such a special place in my heart that I am blessed. Hugs, love and prayers continue for you all!

  7. Best of wishes to you and your family. That's hard, my niece was in the same position a while back. You want to do everything for them that you can.