Luke's Story

Although this was written in March of 2019, I am making this my first post because this post inspired me to start blogging our journey. I realize it is extremely long...so if you don't have time to read it, you can probably get the gist of it in bits and pieces in future posts.

This is a really long post. Mostly written while sleep deprived in a hospital room last week. On top of that I’m not a great writer so hopefully you can see past all of the grammatical errors that I’m sure are there and get the gist of what I’m saying.

March 18. 

A day that will always be significant to us. Tomorrow we will be celebrating life and all of the many blessings that have been bestowed upon us. We haven’t been very open about Lukes medical journey until recently because it was still so hurtful for us to discuss and as his parents we make nearly all of our decisions based on what is best for Luke and at the time felt keeping to ourselves was the best. But I finally feel strong enough and that the time is appropriate to share some of the details of what we have been through.

On March 18 3 years ago we closed on our house. After struggling with infertility for over a year (which in comparison to so many others is not long at all) we weren’t sure if we’d get to make one of the bedrooms a nursery someday but we were excited to have our own home. Two months later we found out I was pregnant. Luke was born in January of 2017. Luke means “light giving” if you’ve ever met or seen Luke you know that his smile alone lights up the room.

Two years ago on March 18 we had a sweet two month old baby. It was a Saturday. We had several different options of things to do that day. We talked about going to a concert. There was a baby shower for our friends. Caleb was supposed to be out of town for work but the trip was cancelled. So we decided to stay home that night and take Luke to church for the first time the next day. So just like so many times before we gave Luke a bath. Except this time we had a horrific, freak accident that resulted in Luke having a traumatic brain injury and fractured skull. So we ended up spending the next 8 days in the hospital (5 of those with Luke intubated and in a medically induced coma) terrified, distraught, and scared of so many unknowns.

Between that time and now Luke developed several other medical issues and our life looks a lot different than it used to. I don’t want to focus on the negative parts and details on various diagnoses, I want to share how God has worked through Luke and our lives.

I won’t pretend it’s been easy. My life has completely changed. Although I always wanted to be a stay at home mom, financially we didn’t think it was in the cards for us at the time Luke was born. I planned on going back to teaching after a 10 week maternity leave. After our accident though there really wasn’t a choice as Luke has therapy appointments nearly every day and sees about 6-7 specialists regularly. This has been one of the hardest parts for me. I love getting to stay home with him and am so incredibly thankful that it’s possible but I don’t get to just be “mom”. I’m his therapist, advocate, scheduler, I deal with the insurances, I’m his special diet coordinator, hold him down on a regular basis to have IVs put in or blood drawn, I’ve called 911 and been on many too ambulance rides, had lots of hospital stays on tiny couches with lots of beeping machines, know how to silence and hook up/unhook everything to those beeping machines 😬😂, and do my best communicating all of the information between specialists to make sure it all fits together and Luke is getting the best possible care all around. I don’t want this to come off as me complaining because I would do anything for my son and am extremely thankful for the opportunity to be the one who gets to do these things for him. I am just explaining how motherhood has been so different than I imagined and how God has used the differences to make me a different person. At times it has been extremely isolating and majorly amplified the depression and anxiety I’ve dealt with for years. But, God has gotten me through it. If I hadn’t been in the position we’re in I would never have met some of my favorite people who are now some of my closest friends. We never would have found our church that has treated us like family since day one and gone out of their way to support us when we are going through rough things even when they barely know us. God has given me the confidence and strength to advocate for Luke and speak up in other situations when I normally wouldn’t be able to because I was so afraid of confrontation even if it needed to happen. Luke wouldn’t have an extra set of amazing people that have known him nearly his whole life who he sees weekly and cares about him as much as his family does. Luke has people we don’t even know praying for him on a regular basis. God has provided every need through many different people. Although my husband works for an amazing company who has been generous and understanding, it’s hard living on one paycheck, especially with a special needs child. God has provided every time we start stressing and every single time I’m shocked and amazed at His blessings. We have had multiple people give to us just out of the kindness of their hearts to lighten the burden on us whether it be financially, loaning us transportation, cleaning, and sending meals. Each has meant the world to us and we are so grateful for every single one of those generous people. Most recently we had a significant amount of money donated to us by someone we have never met to cover everything Luke needed to have his recent surgery, and all of the unexpected things that come up with hospital stays. I had been stressed about his recovery time and having to do most of it on my own once we get home since Caleb has already taken off so much and wouldn’t be able to take off work the entire time. With that generous gift, Caleb was able to take a leave to stay with us during Lukes hospital stay and help transition home with his recovery. It will also allow us to get Luke things he may need in the future that would have been more difficult for us to provide for him otherwise. What a blessing!

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For a really really long time I dwelled on the negatives of our situation. Constantly asking why us? I never lost my faith but I definitely withdrew from God as well as my friends and family at times. Even now I still do this sometimes because for me it’s just easier than talking about the hard things we deal with that others don’t understand and the sometimes well-meaning but hurtful comments and questions.

The last few months especially I have started to see the pieces of the “puzzle” that is our life and it is truly amazing.

After Luke’s accident he had a shunt placed for hydrocephalus to prevent pressure on his brain causing more damage. We know the symptoms to look for if it’s not working correctly and know what to do if we feel there is a malfunction.

August 18, 2018 Luke was pretty much showing every symptom besides vomiting that his shunt was malfunctioning. After 2 hours of not being able to calm down our usually happy baby, we took him to the ER. We spent the next 15 hours there waiting. After going back and forth, saying the shunt was fine but telling us he might have a blood clot in his brain, doing more tests, and saying it’s nothing he’s fine, they sent us home. Looking back, I really should have questioned them more about the results, but we were just thankful he was ok at the moment and ready to go home.

Here is really the first moment I remember thinking Wow ok I can see how God is working in this situation. So the next day I had on my calendar that we had a neurosurgery appointment. Caleb decided to go with me which usually doesn’t happen for routine follow ups. We arrived to the neurosurgeons office and they told us we don’t have an appointment that day. Whaaat? These are scheduled 6 months in advance and you do not miss them. So the receptionist comes back and says they talked about Luke in conference this morning and the vascular neurosurgeon wants to see him can you come back in 30 min? If you’ve ever been to pretty much any specialist office you know you don’t ever just show up and get squeezed in that day. But God got us down there that day and worked it out that way. It still seriously blows my mind.

Anyway, we see the vascular neurosurgeon (who is a new dr on lukes team of drs at this time and not who we were coming to see for the appointment that day) The first thing he says is, “so they told you about the brain aneurysm?” Caleb and I just looked at each other shocked. No, they just sent us home. Even after multiple people had looked at the scans in the ER and in radiology and they told us it was fine. He even had an MRI just weeks before that it showed up on but wasn’t mentioned in the reading notes. THANK GOD for whatever reason Luke was discussed in the conference that morning. I remember asking the dr if this could potentially be fatal. I will never forget the look on his face when he told me yes it could be. He told us this was not from Lukes accident. My first thought was we haven’t been through all of this to just lose him. Then I realized, if we hadn’t been through all the previous trauma and scans, we would never have taken him into the ER and that aneurysm never would have been found. Which could have potentially been detrimental in the future. There was no explanation for his symptoms that we took him into the ER for. But God knew Luke needed to get that scan on that day and got us there. As we were leaving, the dr told us we needed to do an angiogram to see if/how they needed to intervene. The nurse told us they were scheduling those into October. That meant two months later. I started freaking out and she said “I’m going to get him in before then, it’s going to be ok”. She called the next day to schedule an angiogram for the following day!!! That day was of course extremely anxiety inducing. However, when the neurosurgeon came out he said it wasn’t how he expected and it was the best possible outcome. It didn’t need intervention at this point, just monitoring. Same results 4 months later🙌🏼

Seizures are another thing Luke had been dealing with. He has a type called infantile Spasms that don’t look “scary” but are really bad for development if not treated and controlled. Luke tried about 8 different medications I think but nothing was making a huge difference. He wasn’t making much progress developmentally, and was basically a zombie. So after waiting about 6 months for everything to align, the new neurologist we were referred to had Luke admitted for a week in October to start the Ketogenic diet. At this point he was having 9 clusters of 2-6 seizures/spasms a day. 

That hospital stay was rough. Caleb had to go to work and was only able to come a little in the evenings, Luke was feeling horrible, and it was a fine line getting all of his labs where they needed to be.  So we went home and adjusted to this new diet. It was time consuming and overwhelming for me, but thankfully my parents helped prepare the food and eventually it became easier and part of our routine.

About a month after starting the diet we realized his seizures cut in half. That was huge! We were happy with that improvement. I’m embarrassed to say that Caleb had way more faith than I did at this point, and even though we prayed every day for the seizures to go away completely and I knew God could do that, I just didn’t see it happening for Luke.

Fast forward to 3 months after starting the diet. Around this time ( from the end of December to late January) Luke was hospitalized 2 or 3 times for being too acidotic. He wasn’t eating or getting his meds and he needed to be doing both to be where he needed to be for the diet and just to feel good in general. I thought we would never get back to baseline. But we did. And during that time, December 31,2018 to be exact, Luke had the last seizure that we have seen 🙌🏼🙌🏼 What an answer to prayer!! Since then he has taken off making progress. He was happy and ornery again, playful, and meeting all kinds of goals.

Ok, 2019 is going to be our year we thought.

So I take Luke in for his 2 year old well child appointment. I always enjoy going to these appointments because we love his pediatrician and they always seems to be simple and go smoothly. His dr shared our frustration in trying to keep him from being acidotic but still be in Ketosis since it had been successful for him. However she also mentioned she couldn’t find his pulse in his femoral artery. I figured it was because he’s chunky and they always say his veins are deep. She said I’m sure everything’s fine but I want him to get an echo, sometimes there can be a narrowing in one of the heart’s arteries and the lower extremities have a lower blood pressure. I figured she was being overly cautious(and was thankful for her being so meticulous) but I was also exhausted from two unexpected hospital stays with a cranky baby. So I had a break down again wondering why things keep happening to my baby.

The day it was time to take Luke for his echo, Caleb and my mom both offered to come with me. I told them both, “it’s just the scan, they never tell you anything, the drs don’t come in and it’s going to be fine anyway” so I went by myself as I do most of his appointments not thinking anything of it. Luke was happy and playful until the tech was trying to look at a certain spot. She told me she couldn’t get a great picture and was going to ask the dr if he could see well enough or if he wanted to try to look. I thought Luke was just moving too much. About 10 min later the tech came back with a cardiologist. He told me that the pictures weren’t great but that he could tell Luke definitely had a significant coarctation in the aorta. Exactly what the pediatrician had told me it could be. He was patient and thorough and explained all the possible ways that they could repair it. He told me it would definitely need to be repaired by surgery and again, obviously not from the accident. He was born with this and it had just never been caught even though we’ve spent countless times in the hospital around all kinds of doctors. So we are incredibly thankful for a thorough pediatrician.

After finding that out I became really overwhelmed and had a panic attack in the middle of the hospital and had to call Caleb to come pick me up and my parents to get his car. Again, I started questioning why this was happening and why now when he was doing so well.

But then I realized this was just another piece of our puzzle. Even though Luke’s condition is one of the more “simple” defects, CHDs can cause all kinds of symptoms and could possibly be prohibiting Luke from progressing as much as he could. Getting it fixed could only help him at this point. I just hated that it was at a time when he was doing so well and was going to have to face another setback.

So we followed up with the cardiologist and had more testing. After some confusion we thought Luke would require open heart surgery to repair his heart. Thankfully that wasn’t the case and they were able to go in through his left side under his armpit around his back. The cardio team has been amazing and on board and proactive about keeping Luke on his diet to help keep him seizure free.

We knew because of Lukes other unique medical issues it could potentially cause more risks during the surgery but everything happened so quickly we didn’t really have time to make sure all of those added risks had been addressed. The night before surgery I started freaking out. The surgeon explained to me that clamping his aorta during the procedure would cause additional pressure to the arteries in his brain. You definitely do not want added pressure on aneurysms. If they burst it can cause more brain damage or even death. I realized he had not yet communicated with the vascular neurosurgeon who follows Luke’s brain aneurysm. After lots of crying, praying, panic attacks, and phone calls to multiple drs offices I remembered my aunt goes to church with Luke’s vascular neurosurgeon. Definitely not another coincidence. So, i frantically called her crying asking her to track him down for us and help us make sure Luke would be safe during this surgery. The next morning the two surgeons were able to communicate and agree while just like any surgery, there would be a risk, but it would be safe to proceed the way they planned.

Sitting through surgery is one of my least favorite things. I hate being anxious and feeling crowded and terrified that something could go wrong and possibly lose my baby.

The surgery went smoothly and quickly and Luke started to recover quicker than we ever could have expected. After the surgery, we were sent to the same PICU we were two years ago nearly the same date. It is now the cardiovascular PICU. As March 18 got closer my anxiety got worse and I was extremely nervous to be back in the place where we first began this crazy journey, especially this time of year. But as I’ve said before God has made me stronger. Being there wasn’t a trigger for me anymore. We were able to see a dr we saw the first visit to the PICU. I asked if he remembered Luke and told him that I have always remembered him as the first dr to tell me my baby was going to be ok but I also needed to calm down. We had a good laugh about that. He was right, I did need to calm down because it wasn’t helping anything. But I never thought I’d be in a place where I could laugh about it, especially in the same place that two years before had broken me.

I’m probably rambling at this point. But my point is I’m starting to see the bigger picture. Life is really really hard sometimes. It almost always never goes as expected. If you told me 5 years ago my life would be this way I would say no way and there’s no way I could handle that. We may never know the whole “why” but that’s not our job. God has led us through the toughest times we’ve ever been through, (and I pray that the toughest are behind us)but it’s made us stronger and it’s gotten us places we needed to be and find things we needed to find. I’m FINALLY realizing and accepting that God’s plan for us is bigger than we could ever imagine and so much better than our own plans. The journey is messier, the timing isn’t ours, but it makes us stronger and He is leading us to better things.

I also don’t know the rest of God’s plan for Luke but I do know that it is going to be amazing. I know that God is capable of fully healing (which means different things to everybody) Luke. But that might not be in His plan and that’s ok. We have grieved the childhood we thought Luke would have and done our best to move forward. He might always be delayed and struggle with some things. Please don’t take that as a lack of faith or me being cynical because while no one wants or plans to have to watch their kids struggle,I’m ok with however Luke is. Because again, through this crazy journey I have learned God’s plans are so much greater than ours and Luke’s story this far has already proven that to us. Of course we pray that God will heal Luke and he will be able to be independent and happy and healthy. One thing that I love that my husband does when he prays for Luke every night is he prays that most of all, even above the healing, Luke will grow up to have a kind heart and know and love the lord. If he does does that, my heart will be at peace regardless of his physical or mental capacity.

Again, I’m not saying that life is easy or that we have been through the worst. Staying in the ICU a couple of days will definitely make you realize that. I’m also not saying that I understand everything and life is magically going to be all happy and easy all the time now. Because honestly my husband will probably tell me to read this and take my own advice in like two days when I’m crying because life is hard 😂 but I am saying when you think life is harder than you can handle, just hold on and trust God’s plan for you. It might take a while but you will get through it. Really trusting in him is the only way you’ll get through it. Because here we are 2 years later, after lots of prayers, crying, counseling, and I’m in a place I never thought I’d be again. It’s not my old normal but I’m okay. I wasn’t sure I’d be able to say that.

Anyway, thanks for reading my novel about our life. I hope it helps you understand some things about us a little better. I hope it reminds you that God is good even (especially) in the tough times, and I hope that it reminds you to give a little grace to everyone around you because you never know what all they are going through.

Below are some pictures of Luke's journey and how our life has looked a little different than we planned.