Malachi spent most of the week in the PICU and we were finally able to come home Thursday afternoon. Right now he is stable on 1 liter of home oxygen, which is markedly better than the 20 liters he was on one week ago.
I am not really sure how to even begin to summarize a PICU stay. Each day merges into the next and the things I could report to you aren’t very exciting or interesting. The consistent things throughout each day:
*Lots of breathing treatments and Chest Physiotherapy (CPT). Malachi would inhale two forms of medication through his nostrils to lessen lung inflammation and loosen up the junk inside them. Then he would receive chest percussions to try to move the junk enough to cough out. CPT can be done lots of different ways, but this time we had the luxury of having a bed that performed the function. Malachi LOVES this, as the bed pounds his back up repeatedly, bouncing him up and down.
We have an appointment with a home respiratory therapist tomorrow to get out own CPT vest for home use. And we have been continuing the breathing treatments through our home nebulizer every 6 hours along with his cough assist machine, a machine that forces air into his lungs then pulsates it out. Needless to say Malachi hates this machine.
*Antibiotics. We are on day 14 due to making a switch to a stronger one halfway through. This is clearing up the bacteria in his lungs and attempting to prevent a secondary infection like pneumonia. It has added some tummy drama into the mix, but we are praying that will clear up quickly when the meds stop.
*Hydration. Thanks to Malachi’s gtube this one is manageable, but when he was on 20 liters of oxygen the air filled up his little body and made anything in his stomach highly uncomfortable. So while in the PICU we relied heavily on IV hydration and stopped his feeds. When we attempted to restart his nutrition we dealt with some pretty significant seizures so we just got him back to a full feeds regiment yesterday. And his seizures levels back out to his normal 4-6 mild ones a day.
*Reading. Malachi knocked out at least 1 book a day. We watched a lot of movies, listened to a lot of worship music, FaceTimed daddy and Levi, and did our best to make the most of a long stay. When Malachi is in the ICU he is hooked to an incredible amount of monitors and machines, so holding him is often not possible.
Malachi was an absolute rock star with the best attitude. He is such a role model to me about dealing with hard things and still being able to find joy in your circumstances. In some ways our hopsital stays are like a family reunion, with nurses and doctors saying “look how much he’s grown!” Malachi is very remembered by lots and lots of people, some who have been there since his birth. So we have a lot of friendly faces. Even the ICU doctors remember him well, remembering details from previous stays.
This time around we had a breakthrough of sorts that was very special to me. Every other time we have been in the ICU Malachi has been life threatening and very sick. As the week went on Malachi started to feel better and his true personality was shining through. The ICU doctors and specialists got to witness Malachi signing and other glimpses of his intelligence and were genuinely impressed at how cognitive he is. I was a proud mother, beaming each time he communicated on his own with their questions by signing yes/no. He even communicated the source of his pain at one point when his IV had infiltrated. Such a smart boy. We give him a multiple choice list and he is a champ at indicating his pick.
One morning at rounds the ICU doctor noted that Malachi wasn’t acting “like himself”, and it was spot on- they had moved his oxygen flow down and he wasn’t handling it well. It was one of the first times that I felt like doctors “saw” my son, and meant so much to me.
Alright, I think that covers the factual side of the stay. Now let’s talk about the psychological and logistical side.
Any hospital stay is mentally and physically exhausting, but the ICUs bring a different dynamic to them. The care in the ICU is a 1:1 or 1:2 ratio, which is such a blessing. But the care required is much more extensive so there is a steady stream of doctors, nurses, respiratory therapists, and others coming throughout the entire day. I was already running on fumes from trying to keep Malachi safe at home so jumping into the ICU world already weak was difficult. I was extra emotional and just so weary. I couldn’t think straight and my mouth couldn’t keep up with the words I was trying to convey.
Our first room just had a normal chair bedside and getting into bed with Malachi wasn’t possible due to his IV placement. We were moved twice in the unit and after 48 hours we were in a room with a sleeping chair. I was trying to contain my excitement at having an option for sleep and as soon as Malachi closed his eyes that night I crashed hard.
The ICU is focused on healing (as it should be) so parent comfort is a luxury (not complaining here). There are no restrooms inside the PICU so if you have to potty you have to leave the unit and re-check back in to re-enter. So I am pretty calculated on how much I drink/eat to try to limit leaving Malachi’s side. I would wait until he fell asleep and sneak out for a restroom break and a quick run to the vending machine/cafeteria. There is zero privacy in the unit so changing clothes isn’t an option without carrying them out and changing in the public restroom down the hall. Eventually you just feel like a drowned rat though and no amount of clean clothing will help with that level of ick.
We were admitted on Saturday, and on Tuesday I had my first opportunity to run to the Ronald McDonald room to shower, put on fresh clothing, and run some of Malachi’s laundry. The hot water heater was broken but it was a glorious cold shower!
Emotionally I handled this round better than most, likely due to the fact we weren’t ever in a life threatening moment. I had two solid breakdowns but could feel another one brewing when they moved us out of the ICU and to the “floor”. We were put into a closet of a room and at this point down to 4 liters. Malachi’s IV infiltrated and had to be taken out so I crawled into bed with him, but in the middle of the night he vomited all down my hair and back. I was more determined than ever to try to get him out of there and home!
On Thursday we were given discharge papers and we wheeled out of that place as fast as possible. Each time I go to the ER I pack a hospital backpack with 1-2 days worth of supplies, clothes, chargers, etc. Then I pack a car bag with enough for 4 more days and use it as a locker throughout the stay to switch out old/new. This time around I also packed a wagon with all of his machines and oxygen tanks so we were wheeling the train in style.
When we got home Levi ran out to greet us, started crying, and immediately slammed the door and shouted “I HATE YOU MALACHI!” It broke my heart but I understood it came from a place of confusion and not understanding why we disappeared for 6 days. I know that as Levi grows older he will start to understand some of these hard things, but the emotions are still very real and present. Levi stayed mad for most of the evening but when he woke up and we were still home he released that anger.
There are so many emotional parental layers to hospital stays. Being present with one but feeling helpless. Being away from the other and having to close the emotions that surround that situation. So many feelings….and also feeling like you are failing in both arenas.
Levi and I have been running errands together this weekend to give him some one on one time with mom. And lots of hugs and cuddles to help him feel secure. When my world is spinning I know his is too, so trying to get all four of us re-centered has been my priority this weekend.
We pretended like Friday was Christmas and the boys got to open their presents. Malachi was/is still weak and healing so he was excited but overwhelmed a bit. And Levi was very excited this year so that was fun!
We watched Christmas movies, played lots of family games, and spent the weekend reconnecting.
I have felt emotionally fragile all weekend. When I am in the hospital setting I run mostly on adrenaline, crashing about 48 hours after we get home. As I let my mind wander I started trying to think of a time in my life where there wasn’t something hard or challenging for me to get through and I was coming up empty handed. A large majority of my life has been lived with a backdrop of trials and hard things. With the timing of this one being over a holiday week our abnormal family dynamic seemed much more in my face than most weeks. Watching normalcy and easy joy happening with others really got that inner dialogue spiraling. Comparison is one of the easiest traps to fall into.
And then that led to the reality that I am not convinced that we will ever have normalcy or easy joy. Our joy will need to continue to be supernaturally supplied by he Lord and something we have eyes to hunt for. And hearts that truly desire that. Being a victim of circumstances and staying in that dark place is deceptively easy to do.
It is in these moments that the devil spots weakness and strategically enters the scene. This week I have been fighting the many types of grief that rise up. Sadness for my child and the suffering he endures. Anticipatory grief knowing that Malachi’s health will not miraculously improve, but instead steadily continue to worsen. Hospital stays will become more frequent and longer lasting. Selfishly being so tired…and feeling like I need to keep giving more. But also wondering how much more my heart and body can take. The side effects from that fatigue affecting the other parts of my life are becoming more and more pronounced.
We are surrounded by people who love and support us, but also don’t truly see the daily struggle this life can be. And I find myself trying to mask these struggles to protect my fragility. Being vulnerable is incredibly hard for me so when people ask how things are going I give blanket responses that make them feel good and have closure instead of telling them the truth. Transparency seems….pointless. And honesty just makes things incredibly awkward.
I have spent a lot of time talking with God and reading the Word this week, trying to find my balance. I have been seeking Him on some very specific things over the last month and He has been so gracious in guiding me through those. But I still felt a distance between us.
All throughout this hospitalization my mind was drawn repeatedly to one particular verse, Hebrews 10:21-23 “And since we have a great priest over the house of God, let us draw near with a sincere heart in full assurance of faith, having our hearts sprinkled clean from an evil conscience and our bodies washed with pure water. Let us hold fast to the confession of our hope without wavering, for He who promised is faithful;”
Let us draw near. God is steadfast, so when we sense a distance it is done by us, intentionally through sin or unintentionally as a result of apathy.
But aside from simply drawing near, this verse reminds me of the importance of a sincere heart in full assurance of faith. Sometimes it is good to check the posture of our heart in our relationship with God. Is it based on love or results?
Let us hold fast to the confession of our hope without wavering. I love the visual of this. Abiding in God is more than a proximity issue, it is a decision to hold fast without wavering. And this week I recognized that I had let my hands slip off the hem of Christ and wavered a bit.
For He who promised is faithful. As I drove to the hospital Malachi and I listened to worship music and one of the songs mentioned the faithfulness of God. And as I continued to drive towards an unknown situation I had flashbacks of this same drive that we have taken over and over and over again. Each time I was not able to predict what would happen when we entered the doors of the emergency room. But here we are, nearly a decade later and God’s faithfulness in our lives cannot be ignored.
In a world of unknowns and trials, I can honestly speak that God is faithful.
Yes, a large majority of my life has been lived with a backdrop of trials and hard things. But God has been faithful time and time again, and ever present through each of them. I can spot His hand in every fire He has called me to walk through.
So even though this life can be exceptionally challenging, I am thankful for the gift of front row tickets to see the faithfulness of God. Over and over and over again.
This week I am taking a deep breath and working on drawing near again with a sincere heart. I am praying for His Spirit to call out my moments of wavering and help me focus my eyes on Him. He is faithful and has been so good to our family, and this week in the ICU was no exception.