Our little buddy is going on a month of pain that we haven’t fully been able to diagnose. I’m reliving his newborn months. Not fully, but sorta.
It started out as reflux. Classic reflux symptoms. We hit that problem head on. We doubled his meds and stood back proudly waiting for that to fix him like before. When that didn’t work, we changed our strategy and switched to another med that has sodium bicarbonate. Now that sodium bicarb stuff, that’s supposed to do the trick. And it has improved marginally. I don’t know, maybe our drastic response has further complicated his symptoms, but we were desperate and he was hurting.
These reflux issues mixed in with a month of little irritants, like trying to push through his two-year-old molars, a bad case of pin-worms (a gross parasite that comes out at night and you have to wash everything til they are eradicated), and gas. Bad gas.
Even as we’ve tried to address all these little issues, it feels like we’re missing something. He’s is back to his old tricks of holding urine for long periods of time. Like 13 hours. I don’t think I could hold it that long and I have a pretty strong bladder. Problem is he’s not consistent. Sometimes he has dry diapers for long periods of time. Sometimes he appears to be voiding fine. Nothing is consistent enough to help us truly address his problem.
Also, he’s been having more bouts of apnea and more pain screams in the afternoons. I don’t know why, but things get bad in the afternoons right after his nap. It all feels like a vicious cycle but his inability to move air is what is starting to concern me. A neighbor came over last week and was holding him. He started to cry and held his breath and she said, “Breathe!” I dismissively thought Oh he will. He’s fine. But afterward I started to think am I just too numb, too close to his issues that I can’t even discern when it’s a real problem?
I’ve stopped feeding him tastes by mouth. It’s very sad because he wants to try to eat, but a couple of times he just struggled so much with the bolus in his mouth and it took him longer than I’m comfortable with for him to recover. So we’re regressing with feeding. And with walking too. He’s just not so into it right now. He doesn’t feel good.
The next steps are more testing. Lots more testing. We are going to go back to the OR and both the GI and ENT doctors are going scope him to try to figure out what’s going on. Hopefully by poking around we can see some source of a problem. He failed his booth hearing screen on Tuesday too even though the doctor said there wasn’t any fluid behind his ears. Given that, he’ll have a sedated hearing test while he’s in the OR. We’re also going to drop another impedance probe to further understand his reflux symptoms. We’ll do another sleep study. Another comprehensive stool analysis. A renal ultrasound.
It’s a repeat of the pain chasing we were doing a couple of years ago. It’s a repeat of the testing we’re doing a couple of years ago.
I haven’t wanted to write about it because I don’t want to grumble. I haven’t wanted to talk about it because it doesn’t seem like a reality to anyone else but me. I don’t want to problem solve any more ins and outs of his every single body system to pin point the root cause. I’m tired of guessing. I’m tired of holding a whining/screaming baby who is otherwise very sweet. I just want the problem healed, fixed, finished.
It may not be time for that. It may not be time for his suffering to stop. And even though I am not the one experiencing the physical symptoms that he is enduring, I am bearing much of the responsibility of it all. And that’s hard. I hurt because I can’t help him not hurt.
So friends, this post may seem like a venting session. It is in some ways, but my true desire is that you would pray for healing over little Nafe’s body. That he would have some relief. That he would enjoy some things in this life. That even if we don’t see the developmental strides we were seeing before this windfall of troublesome symptoms, he would enjoy the work and people who come along with therapy. Also, that if there is something more serious going on in his body, we would be able to identify it and address it.
It’s easier for me to see purpose in pain in my own life. It’s much harder when it’s my son. Especially all of this physical hurting and not being able to help. The way he looks at me to help him is heartbreaking. I get sad. I get angry. Lately I sense God wanting me to realize how limited I am in the things I can DO for him and just BE with him. Just be present. Holding him. It hardly seems like enough to me, but it’s all I’ve got to give.
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.” -2 Cor 1: 3-5
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!