Eyes Wide Shut
The movie, you say? Well, I have not seen it…and neither is this a reference to naivete. No, but this has been Jennings’s literal state of being for about 48 hours. I can’t say I saw this one coming. Friday into Saturday afternoon the focus was on fevers and nausea. Those are expected and par for the course when it comes to his experience with Ara-C.
We got back home from our potential admittance scare / chemo infusion Friday night around 11:30p. L & J pulled out of the driveway for the next, and final for this round, gut punch at 7:30a Saturday morning. Jennings got home around lunchtime and immediately assumed this position.
This is how we spent most of Saturday afternoon. He perked up for a few minutes of puzzle building, but petered out about a third of the way in. We tried to go play outside at a friend’s backyard, but he was winded after only a few minutes. By 6:30p he was in bed and out for the night.
Sunday is when the shift happened. Out with the fevers, pause the nausea, and enter incredible eye pain. He woke up Sunday morning screaming and writhing in pain. The Ara-C is both drying his eyes and burning them at the same time. Not a great combination. We’ve tried 2 other kinds of eye drops, in addition to the drops we were using before Sunday, but nothing seems to bring much relief. Eye drops are always given prophylactically with Ara-C, so we’ve done them before as part of protocol but he’s never experienced pain like this. Part of me wonders if it has anything to do with the fact that this course was done outpatient. Because of the increased nausea at the end of last week, his fluid intake went way down limiting his ability to flush the drug out of his system. Previously, he has been inpatient when receiving Ara-C and his hooked up to IV fluids so dehydration from nausea is not an issue. It could also just be how the cookie is crumbling this go round. Who knows? In any event, the outside of his eyes are burned like this…
Which tells you how his actual eye probably feels.
Today, we got a similar wake-up call. Instant screaming as soon as he tried to open his eyes around 6a. The drops calmed him down for a little more sleep, but he was up, eyes wide shut, by just after 7a. He sat and laid in a dark bedroom listening to the iPad most of the morning. He did not open his for more than a second or two at a time until about 4:30p.
When the iPad lost its luster this morning, he wanted to build LEGOs. We managed to finish a set that he started yesterday. Lauren and I switched out, but we would find the pieces, then describe where & how they went together. It was slow going and he would occasionally endure the pain to sneak a peek at the “map.”
The drops help a little bit by keeping his eyes lubricated, but they have become a total struggle to get in. In his eyes, pun intended, doing the drops is worse than the pain itself. Fortunately, his Ara-C course is finished and as he gets further out from the last dose this condition should improve. Hoping it is resolved in the next 2-3 days.
Days like today and yesterday certainly give us all an appreciation for the physical gifts we have from God. I take for granted everyday that I can wake up, open my eyes (pain-free), and see the world. That is not a reality for everyone and we would do well to recognize that more frequently. Find those things you should be thankful for and give thanks.
In addition, I can’t help but feeling these days are preparatory in some way. Transplant is a long, hard road and after 3 years, some of that is glossed over in the mind. Maybe in a self-protective way, the mind slowly covers over the difficult, smooths the edges of the hard. Days like these bring the true reality to the forefront, preparing us for what we will again witness and experience - the helpless feeling of a child in distress who cannot be easily comforted. I believe these days are also reminding him, preparing him for all that will happen to him and all he will have to endure from others that will be completely out of his control. Not an easy truth for a 5 year-old, not an easy truth for most of us.
At times, though, he has shown glimpses that he is beginning to grasp some of it. Last night he let me put Aquaphor all over his body (the skin damage is not just limited to the eyes). Previously, my request to perform this action would have been met with fierce opposition in the form of tears and yelling. Last night, he simply nodded his head and said “Sure.” My prayer is that these signs continue. Signs that he starting to believe and trust that everything mommy, daddy, and the doctors do, even the painful things, is done to help. Never is the intention to inflict more hurt. Kind of like what God is preaching to us through his word. “Don’t you know I’m not trying to hurt you? This will help you. I never want to hurt you.” All the while we wriggle, scream, and protest, lashing out in our own tantrums of ignorance.
Well, if we’ve learned anything over the past couple of days, it’s that we are clearly out of practice…although I don’t know that any amount ever really prepares you. Praying for endurance.
“…but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” Rom 5:3-5
Fitting verse for today, MLK Day, honoring a man who clearly believed that and lived it.
#allinforjennings