“I just hope we are home by Christmas!”
I remember saying this sentence to people when Levi was in the NICU in Chattanooga and doctors were thinking his throat issues were simply from his rough intubation at birth. But here we are, Christmas Eve, and I am writing this entry from a hotel two states away with Levi nestled safely with strangers down the road.
I know many times I write the blog doing my very best to convey all positive emotions but I hope I never disillusion you into thinking that this journey is easy for our family. There are many times in our day that the frustrations and grief from our situation takes over bringing me to tears.
This week Jake made the mistake of commenting “Everyone else is falling apart and I am the only healthy one left.” I can almost picture the devil tapping his fingers together and saying “mwahaha challenge accepted” and hitting Jake with a nasty cold. At the same time, Malachi woke up with an extremely high temperature of 103 and what we thought was a sore throat.
One of the challenges of being a special needs parent is trying to isolate what we are dealing with when Malachi gets sick. He can’t verbally tell us, and he can’t physically show us like pulling at his ears for an ear infection. So we simply have to watch and wait, always hoping that the sickness will stay away from his lungs. Pneumonia is one of the biggest fatal challenges kids like Malachi face. The last time he had pneumonia we spent 2 weeks in the ICU.
The part of Malachi’s brain that controls temperature regulation is extremely damaged so fevers are a little dangerous for him too. By the end of the day his fever broke but his temperature continued to drop rapidly down to below 96. His body was warm but his extremities were ice cold. We usually have to go from stripped down and cool washcloths to sweatshirts and winter hats all in the same day. He has stayed fever and sickness free since that first day but his temperature is still wonky so we are watching him closely. We still can’t pinpoint exactly what the issue is.
With both Jake and Malachi feeling off we decided it was a good decision for us all to stay away from Levi and see where these sicknesses progressed. The last thing we want to do is bring something into the unit. The concept seemed good but by lunchtime I was so anxious about him thinking we had abandoned him and could feel the mommy emotions well up inside of me. That was a looooong 24 hours. Thankfully the NICU has webcams above each of the beds so I can peek in on him anytime throughout the day!
Jake is still down for the count so I make sure to shower and put on clean clothes before heading over to visit Levi. I am also obsessively Clorox wiping down the surfaces in our hotel room, secretly watching Jake to see what he touches so I can sanitize it when he isn’t looking. The unit will close to children on Wednesday so I am hoping Jake will be well enough for us to spend time together as a family of four before then.
I did get the chance to hold Levi for 2.5 hours on Friday and it was magical.
Tomorrow marks one week post op and on Wednesday Levi will go back to the operating room to see how his throat has healed. If we get the green light, the tube will be removed and we will start weaning his oxygen. The more we wean the better the snapshot of success will be. To say that we are excited, anxious, and incredibly hopeful would be an understatement! I get butterflies just thinking about the coming week.
Here is a video of the silent boy; it is still so eerie to not be able to hear him make any noises. The silence is pitiful.
Levi had a field trip yesterday as he managed to work his feeding tube out of his nose. He has had an NG tube (Nasogastric= goes through his nose and into his stomach). With his NG tube he has been vomiting several times a day so they decided it needed to go down a little deeper, bypassing his stomach. They ended up changing to an NJ tube (Nasojejunal= goes through the nose and into his jejunum/second portion of the small intestine). He has been doing better on this type of tube and is vomiting less.
In order to make sure the tube is in the right place they had to take him to the Fluorolab where they can take a moving x-ray while they place it. Such sophisticated technology.
Levi also had to get a PICC line in his arm since he still needs IV access but can’t seem to keep one for very long. They were able to do this as a bedside procedure, inserting a catheter into one of his veins. Once we are confident he is done with trips to the operating room we should be able to remove it.
Here is a close up of his sweet head so you can see how much his hair has grown. And a picture of his fat leg because I just can’t get over how thick his little body is.
He is still pretty miserable, but hasn’t needed morphine in over 24 hours. He is requiring some stronger pain meds to keep him calm, as he is not a fan of the ventilator and has been arching his head back very aggressively. Lots of angry eyebrows on this kid this week.
The hospital held an event for patient’s families and filled an auditorium with really nice Christmas gifts sorted by age group and cost (1 ticket, 2 tickets, or 3 tickets). They gave each set of parents 10 tickets to shop with and we were able to pick out some really nice gifts for both of the boys. We will have Malachi open them in the morning, which he will thoroughly love.
Speaking of Malachi, he is absolutely bored out of his mind. He and Jake have been trapped in the hotel room most of the week as we are trying not to share our germs with others. Saturday evening my family got together about 45 minutes away and I thought it might be nice to take Malachi for some brain stimulation. Jake stayed at the hotel in case of emergencies and to give me some peace of mind about leaving the hospital area. Malachi loved every minute of the gathering! He was exhausted by the time we left and actually managed to sleep through the night last night.
Jake and I have also been trying to do therapy exercises with him each day. I hate that he is missing so many appointments while we are here.
In my last entry I mentioned our need for help with Malachi starting January 3rd, as Jake will be heading back to Tennessee to go back to work. We have found a potential solution for a 3 hour daytime shift but will still need some help in the evenings. I am not picky about the time, but would love to be able to go sit with Levi for 2-3 hours each night. I had several people reach out saying they would be willing to help, so I am going to start a group email to anyone that might still be interested in helping during the evenings. If you would like to be added to that email just send a message to me at: firstname.lastname@example.org
You don’t necessarily have to be a nurse to help, just an able-bodied and relatively strong person. You also have to have the ability to stay calm in stressful situations, like if Malachi has a seizure. I will make sure to talk you through the dos and don’ts before leaving you alone with him.
I have been back and forth with what to share with you this evening. God has been placing so many verses and thoughts on my heart these days, and none of them seemed to feel right for this entry.
But as I read Isaiah 61 this evening I couldn’t help but get goosebumps all over my body. Chapter 61 is captioned “The Year of the Lord’s Favor” which made me laugh out loud as I thought to myself “That is definitely not how I would title 2017 for us Carrolls!”
But oh how I will pray and hope that we will be able to title our 2018 with such powerful words!
Now before I start talking about this chapter, let me warn you that I am totally taking these scriptures out of their original context. Isaiah wrote this chapter to foreshadow Jesus (a Messianic prophecy). In fact, in Luke 4 Jesus is in his hometown of Nazareth and is handed a scroll to read in the synagogue..and it was this exact chapter from Isaiah. He reads these words that were written about him so many years ago and then says “Today this scripture is fulfilled.” It is his drop the mic moment and leaves everyone there furious at His claims to be the Messiah.
But when I read this chapter I can’t help but desire to apply it to our situation right now, and it brings me so much encouragement. Let me highlight the verses that spoke to my heart. These words are my prayer and hope for 2018 for our family.
“To proclaim the year of the Lord’s favor…to comfort all who mourn, and provide for those who grieve in Zion—to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.
Their descendants will be known among the nations and their offspring among the peoples. All who see them will acknowledge that they are a people the Lord has blessed.”
Whew I just got goosebumps all over again. The two lines that get me the most are:
They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.
The Lord has clearly planted us exactly where we are right now. We aren’t in Cincinnati by chance; we aren’t in this situation because of something we did or didn’t do. I am choosing to believe that we have been planted here so that the Lord can display His splendor through our situation. So far we have had many dark days, but there will be a day when that darkness will be overpowered by the bright light of God’s glory. My prayer is that everyone who looks at our trials and bumpy road will undeniably see the hand of God completely in control of every second, and that in the end His splendor will overshadow any dark moments we have experienced.
The second line that blows me away is:
All who see them will acknowledge that they are a people the Lord has blessed.
Oh how I pray that line over our 2018. I pray that every member of our family would reflect the goodness of our God. I pray that instead of looking at our family with eyes full of pity, instead we would be seen through a lens that reflects the AMAZING blessings that God has given to our family…as unique and different as they might seem.
Every time we take Malachi out in public we are stopped by well meaning people and they say things that reflect the pity they have for us. “Your life must be so hard.” “God must think a lot of you to give you such a challenging life.” The looks and comments we get are absolutely saturated with a tone of pity.
We usually just smile politely but everything inside of me wants these people to see how blessed we are. We have two beautiful gifts from God. Malachi’s joy is unparalleled and clearly comes from the Lord. Yes, our life has unique challenges but oh goodness does it also have its innumerable unique blessings!
I pray that those words are spoken about my little family and that others would see us and say “Those Carrolls, they are a people the Lord has blessed.” I pray that those eyes of pity would become eyes of amazement as you can’t help but see the hand of God in our lives.
May our 2018 be full of miracles for both of my boys.
Merry Christmas from the Carroll family!