We had a medically complex week…one of those weeks that was going perfectly then stopped in its tracks and did an “about face”.
Jake was off for the week and we were looking forward to some family fun. On Sunday Jake took Levi to the golf course for the first time for some bonding time.
In the meantime, Malachi and I cuddled up and enjoyed a lazy Sunday together with the promise of just he and I going to see the new Disney movie, Encanto. He loved that idea and his jealousy simmered down quite a bit.
Wednesday rolled around and we headed to the theater. Malachi really enjoyed the movie and also enjoyed the one on one time with mom. Afterwards we went grocery shopping together which he was excited to do, but he was having a harder than normal time keeping his head up. To be really honest, I was frustrated with him over it. When he chooses to not hold his head up it looks like his neck is broken and driving him through a busy grocery store with a wheelchair and a cart in tow put lots of eyes on us anyway, not to mention Malachi’s broken looking neck.
I asked him if he wanted to buy mom flowers on our ”date” and he signed a quick yes and smiled with pride.
Later that evening Malachi felt a little warm so I checked his temp and it was 99.2. He wasn’t really acting sick or different so I gave him some meds to help him rest, but 30 minutes later his breathing sounded a little more labored than normal so I spot checked his oxygen saturations. It read 85…education moment: obviously 100 is the best saturation you can get. Malachi’s baseline is 94-95. Anything below 88 is hopsital worthy at our house, and I usually pack a bag at 90 to prepare for the trip.
But Malachi still wasn’t really acting sick. So I grabbed the hospital grade pulse ox and strapped it on, hoping that we would get a better reading, but unfortunately it confirmed the low saturation. Malachi was sleepy eyed and drifting off so I made a judgment call to hook him up on our oxygen concentrator and wait until morning to re-assess. I stayed up all night watching those numbers and hoping that the solid rest would magically heal him.
Thanksgiving morning rolled around and Malachi was parked on 2 liters of oxygen. I felt comfortable continuing to keep him at home and treating him there but then his heart rate starting spiking up. Whenever Malachi has an infection that is one of the main ways his body tells me, and since infections don’t typically self resolve I decided this was worthy of a trip to the Emergency Room at the Children’s Hospital.
But I will tell you, I really really really did not want to go. I want what is best for my son, but I loathe spending holidays in the hospital. It highlights some of the hard parts of our journey and attaches a significant date to them. I can tell you stories about specific surgeries or hospitalizations but can’t tell you the month or day. But I can tell you in great detail about every Christmas, New Years, Thanksgiving, Valentine’s Day, Birthday, etc that we have spent in the hospital because of the memorable date attached to it.
In an effort to avoid reality I packed my bags very slowly- one for the ER and an extra in the car with three days worth of supplies and clothing in case they kept us. Which unfortunately they did.
After several tests and several hours in the ER we were admitted for what looks to be a very early bacterial pneumonia. His lungs aren’t terrible yet, which is a blessing. The viral panel came back completely clear but his white blood cell count was high. All signs indicate a lung infection so they are treating it as such.
Friday morning during rounds we talked about a plan for discharge and the doctors left the decision up to me based on my comfort level. While I wanted to immediately nod and sign discharge papers I knew that Malachi wasn’t quite ready to go home. When he napped his oxygen was down at 83, which is dangerously low. But by Friday afternoon he had stabilized a bit more and I brought him home to continue treatment from here. The antibiotics seem to be working on whatever crud is in his lungs and we are doing nebulizer treatments and home chest therapy to break up anything stuck in there.
Malachi’s demeanor never really changed through the adventure. He was in great spirits and not acting like his normal sick self until Friday morning for a few hours. I talked up the stay, presenting it like a slumber party for just he and I, and he really liked that concept. We watched movies together on the hopsital bed in between nurses rounds, doctors visits, and chest therapy.
We had big plans to pick out a Christmas tree and soak in the last few days of Jake’s time off but those plans have been put on hold until Malachi is back to a safe zone. He isn’t worse but he is progressing toward better incredibly slowly. I have canceled our appointments this week and we will be focusing on healing.
But for conversation sake, let me rewind the week a bit and share some fun things! We officially brought home the batmobile for the boys!
And Malachi couldn’t stop smiling.
While we were in the hospital a wonderful friend helped Jake clear out some trails in the woods behind our house to we could go trail riding. I bundled Malachi up and tried to take him out for a much anticipated trail ride but he ended up having a pretty big seizure once we got out there- I think we tried a little too soon.
The boys got some much needed haircuts this week and Levi looks like a new kid!
Basketball for him has been…umm…interesting. I took him to his game on Saturday and I had several fans laughingly tell me that he was their favorite to watch. I am not convinced that is a good thing! I think it is safe to say that I have a class clown on my hands who loves to entertain. He ran up and down the court with his arms inside his jersey for a huge part of the game.
He snuck into the closet, determined to wear dad’s basketball shoes to the game and was mortified when I told him no…and made him put on shorts.
Levi wanted to give Malachi a real hug after his hospital stay so we found a way to make it work.
If I am being honest, I have not been in a great place emotionally and mentally. The day we got home from the hospital Jake started coming down with a cold. He is masking up in the house and washing hands often. I am cloroxing the house frequently but it is really hard with Malachi’s level of hands on care to keep these germs from him. Not to mention little Levi, who slept face to face with Jake while we were gone. When he gets a common cold he vomits non-stop from his airway anatomy when swollen.
While we were in the hospital the rounding doc and I had a pretty hard conversation about how the majority of children with Malachi’s severity of care pass away from lung infections. He explained that the more Malachi grows, the harder time his lungs will have keeping up with managing sickness. Coming home with pneumonia (but a clear viral/respiratory panel) and being introduced to a cold is a recipe for being right back in the hospital. And the ominous thought that one day a similar scenario to this one might lead to me leaving the hospital empty handed has been hard to handle.
I continue to pray over Malachi’s death, asking God to protect him from pain and suffering when he calls him heavenward. Oh the faith this journey of motherhood requires. But I have nothing else to cling to.
I have shed a lot of tears this weekend, overwhelmed with the suffering that hides around the corner in wait for our family. The reality is that our journey will never get easier. It will only get more complicated, more messy, and more heartbreaking. And I just really don’t want to accept that.
On Friday night I got Malachi settled with all his gear and went to take a burning hot shower, something I always look forward to after stays in the germy hospital. As I looked in the mirror I didn’t recognize the person staring back at me. The dark circles, the gray hairs, the added weight, the dark and lifeless eyes. As I stared in the mirror I couldn’t help but wonder what God sees in me that I can’t see. Clearly in his sovereignty He feels that I am the perfect person for the job of raising Malachi and Levi, but I just can’t seem to see the same things He does. I just feel so ill equipped. And so incredibly alone navigating a world full of suffering. My mom heart wants to protect them from pain, but it just isn’t possible.
I have had to face a reality that my job isn’t to keep Malachi alive- the timeline for that is in the hands of God, where it should be. My job is to be Jesus to him during his time on earth.
Matthew 25 tells us ”For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink…I needed clothes and you clothed me…I was sick and you looked after me.”
”And the righteous will answer him, ’Lord when did we see you hungry and feed you, or thirsty and give you soemthing to drink?…Or needing clothes and clothe you? When did we see you sick…”
”The King will reply, ’Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.”
As much as I want to be Jesus and give my boys the miracles they so desperately need, that is not my role. My job is to love them fiercely, the way that Christ loves them. I am to imitate and show Christ to them so when they meet the real deal the they run towards Him with open arms. And in a world of unknowns and impossibles, that is a role that I can focus my energy on.
My prayer this week is a selfish one…that God gives me His eyes and allows me to see myself through His lens. To be able to get a glimpse as to why God has entrusted me with such a heavy but beautifully imperfect journey. The blessings far outweigh the difficulties but when I am swimming through rapids I can’t seem to get my mind on anything else.
And please pray for Malachi, that he fully heals and God protects all of us from Jake’s cold. Pray for a week of strengthening both physically and emotionally.