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gallbladder, hospitals, seizures, oh my!

I had a goal…not a lofty one…but a goal nonetheless. My goal was to blog twice a week in 2015. It has been hard to find any time to write since Jake has been born and I missed writing. I was sensing that God still had a purpose for this little blog and I didn’t want to miss out on what He was doing. I was off to a pretty good start and then…well, I’m not even sure how to describe what happened. But it sure seemed like our little life in Kansas began to fall apart. Some days we wondered what in the world was happening, but then God would gently remind us again of His faithfulness. And now we are trying to trust Him day by day with this new part of our story that we were not expecting. That’s how life often works isn’t it? We think we have a pretty good plan of our own but things happen and we find ourselves daily realigning with God’s plan and trusting Him even when we don’t understand.

Let me go back to January…

My brother was here helping me with a little kitchen project. We had a cabinet emptied and pulled of the wall and Joel came home for lunch. Right after lunch he started having extreme pain in his abdomen…like my big, strong husband was on the floor in tears. It kept getting worse. We had no idea what to do so my brother got him to his truck and drove him (really fast) into the ER. Two nights in the hospital and one gallbladder removal surgery later, he was feeling much better. And we were so thankful it was an easy fix. Because when your husband is on the floor in that much pain it makes you a little nervous. Just a little.

joel surgery

This all happened on a Wednesday and we were scheduled to leave on a trip to California to visit my parents the following Wednesday. I was so bummed. I thought for sure we wouldn’t be able to go. But God orchestrated even the details of this little trip. We were sitting in the airport and I found myself taking a deep breath. It had been such a crazy week and this was going to be the perfect way to recover. Thank you God for this gift.

california

We were planning on spending the whole week on the beach. The sunshine, rest and time as a family was going to be perfect. Friday we were driving back to my parent’s house after spending the afternoon on the beach and I heard a strange choking/gargling sound. I turned around and Griffin had a horrible blank stare on his face and was unresponsive. We weren’t sure what was happening, pulled over and called 911. I never have been as scared as I was when I pulled his little limp body out of his car seat and handed him to Joel. He was having a seizure. We took an ambulance ride to the children’s hospital, Griffin had a clear CT scan (praise the Lord!), and then we headed home…cause of seizure unknown. They told us sometimes kids just have a weird seizure and that’s it.

The next day Griffin seemed back to normal. I think it took us longer to recover…he scared us! We watched him closely, hoped it was just a random seizure, and went on with our vacation. The rest of the week was uneventful and we made it home. Thank goodness!

california trip 2

And then came February…

We followed up with our pediatrician who referred us to a pediatric neurologist. At this point Griffin still seemed pretty normal and then later that same afternoon he started having jerky “falls” that we suspected were related to the California seizure. He had several more “falls” that weekend and so our pediatrician got the neurologist appointment moved up. We were expecting that the doctor would want to do further testing. What we didn’t expect was the urgency. We went straight from that appointment to the PICU. The doctor wanted to monitor the seizures and get testing done as quickly as possible. The last time we went from an appointment straight to the hospital with a child was with Cora. It felt all too familiar and we were scared. Really scared. There was a lot of waiting and a lot of crying out to God over the next few days. Our worst fear was that they would find a tumor causing the seizures. Between the two of us I am sure we told God a million times we couldn’t do cancer again. The struggle to understand how we could possibly have another sick child was big and we were begging Him for normal test results. We were so relieved when we finally heard that the MRI and EEG both read normal. Praise the Lord!! We checked in Tuesday afternoon and got dismissed Thursday evening. Griffin was diagnosed with Atonic seizures (which is a genetic thing since all the tests were normal). As much as we would love for Griffin to not have to deal with epilepsy, we felt so thankful that we weren’t dealing with cancer again. So thankful.

hospital stay 1 hospital stay 1.1 hospital stay 1.2

And then began the journey of figuring out what seizure meds and dosages would work for Griffin. It has been a roller coaster for sure. We have had some really hard days and some really great days. I have struggled with that heart racing fear every time I hear a thud or Griffin falls. I wonder what the day is going to hold as I open my eyes each morning. It has reminded me of how I need to rely on God’s manna each day…really, each minute of each day. He is the only One who knows what I need…and He is the only one who can provide for those needs.

Like last Wednesday, almost two weeks after we had been dismissed from the hospital. Griffin had been having a few seizures again and I was in conversation with the nurse about what our next step would be. That evening the neurologist returned my call. That is never a good thing, right? When we had been in the hospital the first time they had taken a urine collection to test specifically for neuroblastoma…because of our family history, no other reason. Well that test had come back with one indicator just barely over the normal range. He wanted Griffin to come back to the hospital to have a full body CT scan to rule out neuroblastoma. I got all the details, hung up the phone and totally lost it. I couldn’t handle even hearing the word neuroblastoma. We went back to the hospital that evening with our sweet Griffin. Twenty four hours later we were getting dismissed after Griffin’s seizures were under control and the news of a NORMAL SCAN!! You can imagine the rejoicing that was going on that evening! It was a day of waiting and waiting and waiting and crying out to God (along with so many others) for our Griffin. I think Joel and I wanted to run and dance out the doors of the hospital that night. And Griffin requested a QT hotdog and drink on the way home. You’d better believe we gave him all the hotdogs he wanted. 🙂

2nd hospital stay quick trip

So now…

With all the tests being normal, ruling out anything that might be causing the seizures, we are back to just an epilepsy diagnosis like I explained before. We are working with the doctor to figure out what meds best work for Griffin. We are still having some really hard days but we are having some really good days mixed in there too. And we have been surrounded by so many friends and family and so much prayer as we figure this all out. We have been overwhelmed by the kindness and love we have felt from so many. We are beyond grateful.

And one more thing…

I struggled knowing how much to share with you all. Part of me wanted to just keep quiet. But let me tell you something. We have seen God work in our family in some pretty incredible ways over the past two months. And we were reminded once again of His faithfulness to us…even on the really dark days…especially on the really dark days. And I just can’t keep quiet about that! So PLEASE don’t feel sorry for us at all. That is not the point of this post. I just felt like I needed to give you a little background so I could share what God has been teaching us throughout these days that I just described. Our life has felt totally crazy. I mean…gallbladder, hospital, seizures…oh my! But this really isn’t about us at all. May God receive all the glory for the great things He has done. And may I be faithful to proclaim His glory to you on this blog.

I can’t promise when…because life has been crazy…but there is more to come!

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  • Jen - Oh how my mama heart can relate. Our stories are so similar! Almost 3 years ago, while on vacation at the beach, my then-3 year old daughter had her very first seizure. We rushed to the ER where we had a CT (normal, praise Him!) and left with the same words from the doctor. Exactly a month later, she had a second one and thus began our epilepsy journey. We are still figuring things out and while things are pretty well controlled today, it is still a scary, unpredictable condition. One that requires a daily (sometimes hourly) declaring my trust and faith in His plan for my daughter and our family.
    Just know I’m in it with you! I’ll be praying for relief and answers and peace for your family!ReplyCancel

  • Kristina - Jess, you don’t know me, but I have been following your blog for quite awhile. You are a blessing to me. Thank you for sharing what you guys went through these past couple months. I’m glad sweet Griffin does not have cancer. Will pray that you figure out the right med/dose. Thank you for sharing His goodness with us.ReplyCancel

  • Michelle from Australia - Jess, thank you for sharing. And thank you for inspiring me to join IG so I can keep up with The Macs! xxReplyCancel

  • Laura - So scary! My prayers go out to all of you.ReplyCancel

  • Ashley - Jess, I have been following your blog for some time now and have never commented. However, I felt the need to comment on this post because our son was diagnosed with epilepsy when he was 5 ( BREC seizures). God held us through the entire process and He miracuosly healed his brain this past August (his first normal EEG since his seizure). He saw a great group of pediatric neurologists at Cook Childrens in Ft. Worth, TX, but they didn’t think he’d outgrow it until puberty. It was definitely the hand of God working in the life of our son. Feel free to email me anytime ashleyboothe@hotmail.com. Praying for your Griffin!!!ReplyCancel

  • Angela - Tears this morning as I read this. Thank you for sharing how God is working in your lives. I truly am sorry you are going through all this. My middle son had small seizures a couple years back, and it scared me every time! It’s so hard to watch. Praying for your sweet family!ReplyCancel

  • Meggie - Thanks for sharing this journey with us. You are such a blessing and testimony of His faithfulness to so many. Praying for y’all!ReplyCancel

  • Heather - There is too many details to go into but please know I understand all too well what you are going through. Praying for you and your sweet family.

    One song that I always would hear when we had countless hospital/doctor visits with our son was Hillsongs, “Forever Reign.” One of the lines is, “You are peace, You are peace
    Whom my fear in crippling…” And I found it to be true. I still had moments where I cried, and questioned, and stressed, and cried some more but I did feel God’s peace. Peace that only He can bring.ReplyCancel

  • Mary Ann - I had a major health issue last fall. I wanted to keep it under wraps but finally spilled it to friends and extended family through text messages, calls, and facebook. A wise woman told me that everyone I know needed to know what was going on so they could pray for me and send me healing thoughts. That resonated with me…and it worked. I felt so much love. I am so glad the worst is over for your family, that your husband is doing well and that the doctors are helping Griffin with his seizures. I will pray for you and ask the Lord to send more tender mercies so you will feel his Love and our love. I’ve had times in my life where I thought I couldn’t take another breath because things were so hard…but I never wavered in my trust and hope in God (although there were times I wanted to give up) so I’m really glad to see you doing the same. You are strong faithful family and I know your story has strenghthened my faith in God and and probably many others too. Bless you and bless your darling sweet family.ReplyCancel

  • Susan - You’re such a precious family. I’ve been following your updates on IG and holding my breath with each post. Thank you for filling us in and know how often we all pray and think about the Macs!!!ReplyCancel

  • Kim - Ah sweet McClenahan family. I have prayed and cried for your family. I do believe God still has a great purpose for your blog. He still leads us(strangers) to it daily. Your little Cora brought my family to God and through your blog we continue to seek him. Thank you for taking the time to blog and share your family. Big Prayers.ReplyCancel

  • Alyssa - You guys are so strong. Let me rephrase…God is so strong and He is shining bright through you guys. Keep it up. I think you’re an incredible witness to His power and might.ReplyCancel

  • Brenda Jones - Jess,

    I’ve never posted anything to you before but I wanted to let you know that your family has been a part of mine since before Cora got sick. Somehow God allowed me to happen on to your blog and I have been forever changed. I’ve prayed with you, cried with you and rejoiced with you, all of it.

    You are a great mother, great example of what a true Christian should be and a lovely person. I am a Grandmother just simply in awe of you and Joel and blessed beyond words that I can see God in action through your family.

    The period of time that you were quiet on your blog made me go to Instagram for the very first time just to check up and make sure your little family was ok.

    God has great things in store for you! Please keep this little blog going, it is very much a ministry to all.ReplyCancel

  • kelley - I will keep your beautiful family in my thoughts and prayers.
    God bless you, KelleyReplyCancel

  • Cassie - Dear Jess, I don’t know you personally but I’ve followed your blog for a while and I’m continually blessed and inspired by you and your family. To me you feel like a friend and I read this blog post today with tears running down my cheeks. I’m so glad Griffin is doing better and has been cleared from cancer. Thank you for sharing the good times and the bad-real life is hard and terrifying at times and I admire your transparency on it. I also love your faithfulness. Praying for you and Joel and your sweet family. God bless you!ReplyCancel

  • Stefanie - You had a rough month! My thoughts and prayers are with your sweet boy, you, and the rest of your family!ReplyCancel

  • Susan - So glad you did share, it allows us all to be a partner in prayer with you. Have a peaceful March, goodness knows you’ve had enough events for the entire year.

    Susan in San DiegoReplyCancel

  • JennySue - I am SO thankful for your blog and that you feel led to continue writing. Please never hold back asking for prayers here also! I will keep your family in mind and I hope things start to go back to “normal” for you all soon. To God be the glory!ReplyCancel

  • andrea - praising God with you and continuing to pray for your family!ReplyCancel

  • Toni :0) - Oh Jess, what’s scary and frightening time. Thank you for sharing and will continue praying for your sweet family, I can’t imagine. I’m glad to hear you seem to have some answers. Keep that faith going strong. I absolutely believe in Him and put all my trust in him. I know you do the same. God bless.ReplyCancel

  • Deb - Jess, My heart goes out to you! So much for you and Joel to deal with. Thanks for sharing. I have been lifting you all up in prayer. Seizures are such scary things for all involved. (Our son deals with them too.) Take care and may the remainder of this year be quiet on the medical field.

    Also, remembering your sweet Cora on her birthday. We are remembering the day our son, Nathan, went to heaven on March 4th. So grateful to you for the blessing you were to us during our difficult time.

    DebReplyCancel

  • Lea - Bless your precious heart, what a tough time and what a testimony you have been to the faithfulness of God. May the week ahead be filled with calmness and peace for you!ReplyCancel

  • Melissa Joy - I was in tears reading this. Tears of horror, just imagining you living through that… and also tears of joyful thankfulness, praising the Lord with you that cancer is not invading the life of your sweet child again.
    Thank you for sharing this with us, Jess, so we can glorify God with you and praise Him for His faithfulness which lasts forever!! Psalm 136ReplyCancel

  • AuntieMip - Jess,

    You are a perfect example of the good and faithful servant. I genuinely appreciate your sharing these recent developments with us because you owe us nothing. Your life and family matters are just that, yours.

    Like most I came when Cora was in need of prayer. I stayed because, in the end, it was you and Joel who needed our prayers most. I really stayed because you make beautiful and chubby baby boys, you are creative and I find inspiration here and your faith, of my word your deep, abiding and glorious faith.

    These last few weeks have been unfair and terrifying. I can imagine the fear you endured you thought Griffin might also have neuroblastoma. I am a pediatric oncology nurse. I have been in that room where parents have been told their child has cancer and sadly I know families who have endured this truth for more than one of their children. I praise God that is not your truth with Griffin. I have both a mother and nephew who are epileptic. I shared some of this with you on Instagram. My nephew is a College Sosphomore on full academic scholarship. He drives. He has friends. He leads a completely normal life. And so does my mama. Mother of 5, grandma of 8. Twenty-Seven year career as the administrator of our parish. Like you she lost a child to cancer. Like you she is strong. She is faithful. She has shown that putting your trust in Him is the only answer to questions that have none

    I hope this encourages you. Your boys are beautiful. Your family is so lovely. You have crafted a life that reaps the rewards of your faith and that you choose to share it with us, complete strangers, is a gift.

    So here I am, all these years later. Still reading. Still learning. Still praying.ReplyCancel

  • EricaG - Oh, Jess! You’ve been through a lot. I hope you have some time to breathe. Sending my love!ReplyCancel

  • Kathy L - I’ve been loving your family since I cried for baby Cora. You are one brave and inspiring momma. Thank you for sharing and loving and showing us how its done right. xo KathyReplyCancel

  • Anita - Dear Jess So happy to hear all is well and God has been with you through this very trying time. I have followed your blog since Cora . Thank you for sharing your sweet family with us, you are such a blessing to so many. Keeping you in our thoughts and prayers…ReplyCancel

  • Sue - Jess, I have been a Christian most of my life yet your faith still amazes and humbles me. You and Joel are such an inspiration to me and so many others. I have been praying for your beautiful family for years and I’m going to keep praying. I hope you continue to feel the Lord’s presence and work in your life. Your faith and this blog honor Him so much. I’m praying for healing for your beautiful boy and total peace for your family.ReplyCancel

  • Julie - Oh Jess, I am sorry. My daughter is a neuroblastoma survivor, and we have been back at the hospital for various things (most nothing serious), and it is hard every.single.time. Everything is harder once you have been down the worst road imaginable. Thank you for being honest and sharing your heart. And so incredibly thankful for your good news and your sweet boys.ReplyCancel

  • Celine - You are such an incredible woman, and your faith is inspiring. Praying for your family!ReplyCancel

  • chelsea - Thank you for sharing. I am so grateful that Griffin is doing better and that your faith in God is helping you and your family. Reading this post reminded me of my pastor’s sermon from last week about Darkness. He talked about how God is with us in the darkness, even when we can’t tell. If you have time, give it a listen. Sending prayers!

    https://itunes.apple.com/us/podcast/march-1st-2015-light-dark/id292007787?i=336669573&mt=2ReplyCancel

  • Sarah joy - Wow! Not great start to 2015. Hope the rest of the year is smooth sailing. Love your family beach photo.ReplyCancel

  • Debbie H. - Oh my is right! Will certainly be praying for your sweet family and for Griffin’s treatment plan and meds to get figured out very soon. (((HUGS))) LOVE and PRAYERS to you all. I have been following your story since you first began posting about sweet Cora…You are a true inspiration to moms everywhere!!!
    SPRING IS ON THE WAY 🙂 It is getting warmer and the snow is melting here in CO 🙂 YAY!!! I hope Kansas is warming up for you too!!! So thankful that the tests Griffin had for cancer were NEGATIVE!!! That is s BIG PTL for sure!!!ReplyCancel

  • Vera - I have been reading your blog since Cora was sick, but haven’t commented. Just prayed, cried, and then celebrated your sweet beautiful boys from afar. But this week is the one year anniversary of my son being diagnosed with epilepsy, and I just wanted to say that I’m sending prayers your way again and you are not alone. Thank you for the perspective that it is “just” epilepsy, because you are right, it could be so much worse. I hope our boys outgrow this!ReplyCancel

  • Karen - Dear Sweet Jess,
    I just want to hug you! You are such a strong lady . So pleased Joel’s condition as well as Griffin’s is manageable. Know there are many praying for Griffin and that medication is successful. You know better than anyone how much God loves Griffin and his family. Continue to trust. You continue to be an inspiration to all of us!
    KReplyCancel

  • Mendi - I have been praying daily for darling Griffin and your family.ReplyCancel

  • Tiffany - Thank you Jess for sharing your faith and belief, in the good and tricky times.ReplyCancel

  • traci - I’ve been following you since your friend, Meg Duerksen (sp)…took photos of Cora and introduced us to your family asking us to pray for you all. I LOVE your spirit and can just tell, if I were to meet you one day, I would instantly like you all 🙂 My mom was diagnosed with epilepsy and yes, it can be VERY scary to witness the seizures but once the meds are in place, they really can live a very good, normal, long life. Sooo, I believe fully your little guy is going to be just fine!! Praying for your mama nerves over this and God will continue to give you a peace that goes beyond our understanding.ReplyCancel

  • Amie - All I can say is We love you all dearly! What a journey it has been! Thank you for always faithfully putting so much in perspective for me still to this very day! Your faith and Love for God and life still bring it all clear for me even through the storms seven years later! I will continue to pray each day for you and your family! ReplyCancel

  • Tori - I had tears as I read this. I’m so encouraged by your honesty and trust in our Lord and Savior Jesus Christ! What a joy to know He never changes even though our emotions often do. I’m thankful for your blog! Tori Jones (Omaha, NE)ReplyCancel