I have mentioned the post-hospital exhaustion to you many times before, and this week it overtook us like a wave. Malachi’s stamina for anything that takes a lot of thinking or physical exertion is very diminished so we spent most of the week taking it easy at home and catching up on all the “things”…phone calls with insurance, cleaning, laundry, grocery pick ups, and paperwork. There is an incredible amount of paperwork in the medical momma world.
His new medicine regiment is still taking a toll on him. It makes him more lethargic, but also keeps him from sleeping which I can’t wrap my head around. He is sleeping only 4 hours each night. His seizures are also pretty nasty these days, but more on that in a minute. He still doesn’t have his color back yet which makes me a little nervous.
Now Levi on the other hand has the energy of a thousand Mountain Dew drinking children and has been doing circles around the rest of us. I had the house completely mopped and cleaned up and on Thursday he accidentally dropped a can of Pepsi from overtop his head. The can exploded and started spinning circles, and before I could jump on it like a live grenade it had done some major damage. It left a trail of Pepsi spray on all walls and furniture within 15 feet of the can. It somehow managed to spray everything at floor level and all the way up to 8 feet tall as it gained momentum. It also sprayed each person and dog in the house.
As I surveyed the damage I literally had to start laughing. What a metaphor for our lives right now. One day you are feeling good about how things are going, then BAM a Pepsi can hits the floor. I didn’t even know where to begin on that cleanup process.
This week I have been so incredibly thankful for our dogs. They have taken the brunt of Levi’s attention and built up energy, and done so with such submissive kindness haha. Shiloh even earned a silver medal from Levi.
I am also incredibly thankful for the playground and the trampoline. They have been the highlights of our days and having those things right outside the front door is such a blessing. This happy video will offset the other one that is about to come:
Malachi had another liver enzyme check on Friday but we have not heard the results yet. His seizures are very aggressive and lasting up to 4 minutes and I am so desperate to get him back on some of his former meds. We have to let his liver heal some more before that can happen, but the helpless feeling seeing him get stuck in such rough seizures is difficult.
But words cannot describe how happy Malachi is to be back at home with his family and his dogs. This is most definitely his happy place. Me too buddy, me too.
On Thursday we had a scheduled appointment with the Cerebral Palsy Clinic at the hospital. This was in place pre-chaos so it worked out to get some of Malachi’s bloodwork done while we were there anyway. The CP Clinic is a group appointment where each of the boys gets to see the Neurologist, Orthopedic Surgeon, and Physical Therapy for an assessment and measurements on muscle tone. They called the day before and told me that they needed baseline x-rays for Levi’s hips, feet, and spine so we were told to get there a litter earlier.
Levi’s PTSD has been ramped up a bit with his recent RSV fight. While Malachi and I were inpatient at the hopsital Jake had to take him to the pediatrician to figure out why he was sick. They ran all the tests, including a Covid swab, step test, and a blood draw. So when I mentioned the doctor again he immediately went into high alert, even waking up the nights before the appointment in tears yelling “NO DOCTOR MOMMY”.
He cried the entire way to the hospital and I explained that they were going to take pictures of his feet, hips, and back and that it wouldn’t hurt. X-rays are a new concept for him and oh boy what a process that was. Add into the mix that the hospital wouldn’t let Malachi into the x-ray room and told me to stay with Malachi and they would take Levi alone for his X-rays. Ummm….that’s a hard no. He was already losing his mind at this point so much that he was vomiting in the waiting room. The idea that I would make him go in without me by his side was just not settling well with me. And when he heard their suggestion for me to stay with Malachi, Levi grew even worse. I turned on music for Malachi and decided that he would just have to stay in the waiting room alone for a few minutes and prayed that he wouldn’t have any seizures. Last minute they were able to snag a nurse from another department to sit next to Malachi. I understand not wanting to expose kids to needless radiation, but we are talking about Malachi who has had hundreds of x-rays, not to mention CT and MRI. I don’t often ask for exceptions but this one warranted it, specifically with how out of control Malachi’s seizures have been.
Here is a video of the madness. I was sitting in the waiting room catching vomit from a hysterical Levi and listening to Malachi laugh at his brother. I took a quick video to share with Jake later as I knew words wouldn’t adequately describe the scene we were creating in front of all the other patients:
When we finally made it up to the exam room to meet with doctors Levi was still a sobbing mess and Malachi went into another large seizure. The neurologist witnessed this one firsthand and made the decision to increase one of the new meds we put him on. He wanted me to use rescue meds on Malachi (a medicine we keep on hand for seizures lasting longer than 5 minutes) but when that happens I have to call 911 and take him legit into the hospital ambulance style because it slows down his breathing and he needs oxygen support. Thankfully by the time we finished that discussion Malachi started to pop out of his seizure.
Funny side note- the orthopedic doctor was new to us and asked “Are they twins?” I must have looked at her like she had two heads because she immediately retracted the question. I have realized over the years that doctors quickly try to find categories to make things make sense in their heads when it comes to abnormalities. We often get asked if they are adopted since we have two with such varying medical issues. On the night that Malachi was born the hopsital staff asked me dozens of times what I had been doing that weekend, trying to find something that would line up with a placental abruption. I told them that we took the youth group caving and somehow it got in my file that “Mother fell while caving.” All of the oddities surrounding his birth were attributing to me “falling” which was something that never happened. But in their minds it was an explanation that made sense so it was declared as fact. This was such a sore spot for me, as it removed the urge from them to figure out what ACTUALLY prompted the abruption. Thankfully my OBGYN knew better and prepped Levi’s pregnancy accordingly; I abrupted spontaneously again with him as well.
After our appointment we went down to the blood lab to get his liver enzymes checked. While we were in the ICU Malachi infiltrated at least 4 IVs (blew the vein they were in). Finding a vein to even poke for blood is very difficult right now so it took a few sticks before we got enough for his sample. Malachi is so incredibly tough though and rejoiced alongside of us with a sweet smile when they finally started getting some flow.
Late Thursday evening Malachi and I started showing signs of sore throats, which was super disappointing since we had stayed away so long to prevent catching what Jake and Levi had. Thankfully it hasn’t progressed into a full blown cold, just a menacing sore throat for now and it seems to get better each day. On that note, Jake has continued to struggle with the after effects of his cold- it has officially been over three weeks since his symptoms began. He went to the doctor on Saturday for an ear infection and also a Z pack of antibiotics. And I know you will ask, but both Jake and Levi were tested for Covid and it was negative (Levi at the start of his sickness and Jake on Saturday).
Malachi and I are scheduled to be at Vanderbilt late this week but will be letting our symptoms and health dictate that trip.
Needless to say, it wasn’t a week full of beautiful moments and rays of sunshine. It was a pretty difficult one, each day focusing on just making it to bedtime. When Malachi is only sleeping 4 hours a night it means the days often blur together and having multiple days of that can mess with my psyche.
This week the Spirit continued to put the same verse on my heart:
”I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all things through Christ who gives me strength.” Philippians 4:11-13
I know I talk a lot about contentment on the blog and how it is something we often have to choose. This was definitely a choose contentment week as things weren’t as easily accepted as “good”. But these words resonated with me this week as I reflected on this past month of ups and downs. In the last month I have been in need. I have been hungry. I have been living in want. And as our minds naturally do in those dark days I was drawn to the “living in plenty” moments and the “well fed” moments for my comparison.
But contentment isn’t meant to be an easy and natural thing, as it is not the same thing as joy. Contentment is choosing to be satisfied with things just as they are. And this cannot be accomplished apart from God.
Acceptance of the hard things in life cannot be done apart from God. We often see acceptance as surrender…but isn’t that what faith does? Surrenders our ideals to God’s plan.
But like Paul says in this verse, we have learned the secret…
”I can do all things through Christ who gives me strength.”
Before children I always used to apply this verse to my moments of triumph and victory in something. It was my way of giving glory back to God and acknowledging Him in my success.
But now I apply this verse in my moments of human failure. It my “end of the rope” moments when I have nothing left to give. It has become a heartfelt prayer to Him, crying out when I have nothing more of my own to offer a situation.
In life there are lots of things that you can say you will never be able to do. I could never _________.
But there are things in our life that we were never meant to do alone. There are things that you simply cannot do apart from the Lord.
When God comes alongside of you in your weakness and shares His strength you will most definitely find an inexplicable contentment knowing that He is right by your side.
I am rambling…and totally recognize that haha. I hope that you take time this week to read through Philippians 4 and see what God wants to highlight in your life. It is one of my favorite chapters and I have memorized most of it to help me through the hard moments in life. If you have never experienced God speaking to your heart through scripture I really encourage you to take time to read this chapter and watch what He can do!
Please be in prayer for our family still. We are still in shambles a bit and need a solid week of health and strength to get our footing back. And please continue to pray for Malachi’s liver health so we can get him back on some seizure meds that will work.