This week was packed full of activity…so here we go…
Monday morning Malachi and I headed to the hospital to check in for his overnight EEG. I was throwing an internal temper tantrum the whole way, completely questioning why we were doing this test in the first place. But with the new neurologist, who happens to be an epileptologist, I figured it wouldn’t hurt to chase a few rabbit trails with him. My temper tantrum got worse as we sat in the lobby of the waiting room, waiting “patiently” to be taken up to our room. Before you judge me, hear me out…this waiting area is shared by admissions like ours as well as the emergency room patients. So we hid in a corner and tried to avoid the plague ridden children filing through for emergency treatment. Malachi’s immune system is no match for their germs.
We were taken up to a room and met with his nurses. After getting settled in, we were led to the hospital basement to have the electrodes put on his head. This is a 20 minute process, and Malachi handled it surprisingly well. When we finished, we wheeled Malachi and his EEG gear back up to our hospital room. Now Malachi alone tends to turn heads, as it isn’t often you see a three year old in a wheelchair. But add 20 wires stuck to his head and a giant computer and you REALLY get some looks haha. I decided to kill some time by documenting this experience for you all, so here are some photos; please note how amazing his eye contact is in these!!
Once we were back in the room we went “live” meaning we had to be on camera for the next 23 hours. The area that the camera could capture had his hospital bed and a chair in the frame. but that was about it. I was given a button to push when he had a seizure and it would chart it on the computer. The computer screen was also turned facing us so I was able to watch his brain waves. It was pretty mesmerizing!
The cafeteria staff brought in a tray, and I was oddly excited as I was starving and planned to snack off Malachi’s tray! But when I opened the cover it revealed a completely pureed meal- pureed chicken in fact that had been placed into an oval mold in an attempt to make it look normal. I did a little gagging then decided to let Malachi try some. He LOVED it.
Malachi had four seizures while we were there, and each of them was a different level of intensity. Truthfully, it was the best case scenario as we were able to see all of his types in one sitting. I even flagged some of his staring spells to see if he thought they were absence seizures. It was a LONG and uncomfortable evening but we made it through!
The next morning the neurologist came by to get an update on how the evening went. He scrolled through the system, looking in particular at the episodes I flagged and said: “Yep, that was a seizure.” Hmmm….not exactly the information I was hoping to glean from the experience. Of course it was a seizure! You asked me to push the button for all seizures! My temper tantrum started to rekindle.
Here is a visual that will show you what Malachi’s brain does during an episode:
He said that it looked as though the seizures were originating from the right side of Malachi’s brain, which is in fact the more damaged side. He agreed with everything the Vanderbilt team had noted last March. So I asked him where we should go from here.
He brought up three solutions to help minimize Malachi’s seizures:
- Vagus Nerve Stimulator- a device like a pacemaker that is implanted in Malachi’s chest. It is programmed to stimulate the vagus nerve in his neck and stop an active seizure when you wave a magnet over it.
- Brain surgery- they would go in and remove portions of his brain that are damaged.
- Increasing his medications
At this point I had a very real conversation with the neurologist. Malachi is having 4-6 seizures per day, depending on his discomfort level (as discomfort is his primary trigger). So if we go on a road trip, and Malachi has to burp but I cannot get to him, he may have 6 seizures in a row. But I know the cause and I know how to make them stop…simply pull over and burp him. If he is constipated he may have 4 seizures in an hour. I can adminsiter a suppository and they stop.
Each of his seizures typically lasts less than 10 seconds, although sometimes he has larger ones that can go 30-45 seconds. In epilepsy land, this is a relatively short seizure. So I asked the neurologist again if the seizures were “damaging” Malachi more, or if they were simply a symptom of a problem we know exists from birth. He said that they were not continuing to damage his brain, but they could be preventing him from living a typical life and developing typically. Like his seizures could be getting in the way of his therapy progress, etc.
I took a deep breath and reminded him that we HAVE to look at Malachi’s history. He was born at 24 weeks…dead. Literally dead. 15 minutes of CPR brought him back to life but his brain suffered oxygen deprivation and hemorrhaged leading to the highest grade of brain bleed on BOTH sides of his brain. He developed hydrocephalus and has to have a device in his brain for the rest of his life. ON TOP OF ALL THAT TRAUMA, at 8 months old Malachi developed Infantile Spasms, which on a typical kid holds an 80% rate for severe mental retardation. At this point I looked at the doctor and said, frankly we are THRILLED that Malachi is only having 4 seizures per day! His story should be much more complicated, but we have been blessed.
And as far as “developing typically”, we have to be realists. Jake and I are very aware that Malachi will not develop typically. Malachi has his very own highway in life, and on that road are no mile markers or signs telling us how far away he is from normal. Malachi is Malachi, and he is exactly who he is meant to be. Do we wish we could take away his pain and struggles in life, absolutely. But do we mourn his non-typical development, not at all. I explained to the doctor that as his parents, our goal for Malachi is to live a life filled with joy and happiness. Increasing his medications in such a way that he is not able to function with joy is something we are cautious about. Brain surgeries and device implants are things we are not going to consider until the joy is taken from our son and we are left with no other options. Malachi is such a wonderful, bright, and happy kid; if we can have such a bubbly boy that just happens to have 4 short seizures a day, then we count ourselves very blessed. If we have to chase a seizure free day at the expense of his clarity and well being in all other areas, we may just have to accept the seizures for now.
I reminded the doctor that although we would love to see Malachi achieve milestones, our life with him is not driven by them. Would we love to see Malachi read and write? Absolutely, but if he doesn’t than that is fine too. We have to make decisions based on making his life as lovely as we can. At this point in the conversation, the man just started smiling awkwardly…clearly not sure what to say. And if you know me personally you will know that I thrive off of awkward moments, so in true Leah fashion I asked him why he was smiling. He didn’t have an answer and continued to awkward smile…even when he walked out the door.
So here was the takeaway from the 24 hour stay. Malachi is in fact having seizures (SHOCKING). His brain wave at its normal rate is chaotic with lots of spikes. We may try a small increase in medications in a few months, but I have a few other routes I personally want to explore first. And another shocker…the new neurologist decided to transfer us back to the nurse practitioner…haha! We will follow up with her in 6 weeks.
As we left the hospital both Malachi and I looked like train wrecks. He was crying every time I tried to pick the glue out of his hair, so I gave up and just took him on home where I could put him in a tub. But his crazy hair was pretty awesome.
The rest of the week was busy as could be with appointments. We met with his GI doc for the first time in 9 months to check on his growth. Malachi is nearly three feet tall and weighs 35 pounds. I explained his new diet on almond milk (which he still loves by the way) and our attempts to increase his table foods as much as possible. Doc seemed happy with the progress and signed off on him for another 6 months. Woohoo!
Thursday rolled around and Malachi seemed a little off. I noticed him sneezing frequently, and I was not feeling too well either. Sickness hit me first, and then Malachi by Friday morning…stinking hospital germs. It seemed like a head cold, but he was doing his crazy sickness coughs so I decided to run him to the pediatrician during their walk-in hours just in case. Sure enough he tested positive for strep throat and an eye infection (the two oddly tend to go hand in hand with Malachi). She suspected it may have been a false positive but thought we should start a round of antibiotics anyway.
If you are new to the blog, Malachi is a terrible terrible terrible antibiotic kid. Without going into took much detail, he and I are going through about 6 outfits and two sets of sheets daily. It is a dizzying nightmare with lots of intestinal issues. Sometimes his tummy calms back down by day 5, so we are crossing our fingers until then!
This week is a huge week….we close on the house on Thursday afternoon! A very dear friend contacted me this week and generously offered their camper for us to live in while we are in between homes. This is a top of the line, luxurious camper with a kitchen, heat, bathroom, two tvs, and plenty of room for the three of us! We have reserved a spot by the river at a local campground and are ready for this next big adventure in our lives! We have spent the week loading up the basement of the house we will be renting, and our goal is to have the cabin emptied by Tuesday evening. Things are about to get crazy! Here are some pictures of the inside of our new temporary home.
Malachi and I will be traveling up to Ohio for a bit to break up the three weeks as vagabonds, and Jake will be coming up to join us when he gets done teaching. We are hoping to be able to get into the rental house by January 1st!
Whenever I find myself back in the hospital setting, that same sick feeling comes over me. Malachi and I went to visit a friend in the hospital two weeks ago, and I got extremely dizzy and felt like I was going to faint. It is such a psychological experience for me, and I am embarrassed that memories alone have such a grip on me. It is ridiculous.
But when I take Malachi into these settings for Malachi things, I have something to focus my nerves on. This recent visit went surprisingly well with very little anxiety. I was thinking back on the previous year and realized that it had been a whole 6 months from our last hospitalization! This truly is amazing! God has been so good to our family. He has blessed us with a truly heartwarming child that finds happiness in the little things we tend to ignore. Like the sound packing tape makes when you use it. Or the poof noise when a two liter is opened. Malachi’s world has changed our priorities in life….our standards for success. He has taught us about the simple joys all around us.
We always say this, but Malachi is only flawed by man’s standards. He is PERFECT in the eyes of God. He is exactly the way that God intends him to be, and when we realize that we are able to let go of unmet expectations and simply stand in awe that God gave us such a cool kid. As much as I would love to take credit for our peace concerning Malachi, that would be sinful…our contentedness is a gift from God. And we are so thankful for the lens he has placed over our eyes, allowing us to see the beauty in the chaos.
I hope that you too will be able to see beauty and have peace concerning your “flawed” situations. Things that God has placed in your life that are out of your realm of fixing. Things that are intended to remain “broken” by man’s standards, because God has something else in the situation he wants you to see or learn. I hope that His peace overwhelms you as it has for Jake and I.
Please remember us this week as we take a step of faith and turn our lives upside down. Pray for good weather as we camp by the river and pray that Malachi’s system settles before I am without a washer and a dryer haha.
We love you all,
Jake, Leah, and Malachi