Update on Felix: Down and Then Up Again

felix with EEG

Sorry for my absence lately. I have a hard time writing updates when we’re in the midst of a crisis. And last week was another one of those nightmare weeks. But right now we’re okay again.

I was becoming increasingly frustrated that Felix wasn’t taking the bottle. We’d been forced to start with the NG tube because his breathing was so bad he could hardly drink without aspirating; but his lungs had since cleared up completely and there was no longer any clinical reason to keep going with the tube. Except for the fact that he couldn’t remember sucking any more. He’d been exclusively tube-fed for over a month and had completely lost interest in oral feeding. Even if he’d wanted to, he no longer had the skills.

I asked for advice from friends, did some research, and concluded that Felix needed to experience hunger to trigger his sucking reflex. So I talked to our team of doctors and they agreed to let us withhold food for a stretch of time to see if that would encourage him to start bottle-feeding again. We were going to stay with him round the clock and try bottling if he ever showed any interest. Ben and I made up beds in his room and got ready for a long night.

He’d gone without food for nine hours and I was trying to get him to take his bedtime bottle when the first seizure hit. His eyes went glassy, his face turned white, and his body went limp in my arms. Ben called for the nurse and she rushed in. Within a  few moments Felix revived — his colour came back and he was moving and looking around again.

Unfortunately, another seizure happened a few minutes later. And then again a few minutes after that.

Over the next few hours he had fifteen seizure-like episodes. Even when he revived he wasn’t fully there. His eyes stared out into the night. It was absolutely horrifying to look into my child’s eyes and not see him there.

I lost my mind. I was so afraid that he’d gotten an infection in his brain and this was it. In order to be eligible for gene therapy — his best hope for long-term survival — he needs to remain free of infections. I was convinced that he was either dying or he was losing his one chance at a long life.

Eventually, as one mysterious episode continued to follow the last, I curled up on my bed, covered myself with blankets as nurses and doctors came in and out of the room, and just blacked out for a few hours. I didn’t know if I was going to survive this.

At some point he stopped having seizures and the staff let him (and us) rest.

The whole next day Felix was lethargic and unfocused. He was equipped with an EEG (as seen above) to have his brain patterns tracked, to help us understand what had happened. Our doctors were somber. One of them prayed over him with tears in her eyes. We didn’t know what was going to happen to him.

It took Felix several days to recover from that night. It took me even longer.

The primary doctor in charge of Felix’s care did some intense research and discovered that children with ADA-SCID tend to be prone to seizures when placed under stress. Turns out, starvation is a major stressor. (Again, though, this information was hard to find since the condition is so rare and the survivors so few.)

He had a few more episodes two days later which sent me into another spiral of agony.

But for the last few days, he’s back to his old self.

There is no infection. He’s just as eligible for gene therapy as he was before the seizures. It’s possible that Felix will deal with seizures for the rest of his life, though thankfully there haven’t been any more this week. And though they’re stressful and exhausting, seizures aren’t harmful in and of themselves.

And in fact, things have recently taken a turn for the better: on Thursday night Felix started to suck on his bottle!

We have no idea what changed. For weeks we’d been trying without success. He simply had no response to the bottle in his mouth. And now : boom! Sucking!

It still takes him an hour to get a fraction of what he needs, but the fact that he’s taking in anything at all is so encouraging to me. He might never bottle full-time, but I’m just so happy he’s able to take some pleasure from oral feeding.

So here we are again. Worried, anxious, hopeful.

Waiting.

(PS: He yanked out his feeding tube one morning — hence the reason we usually keep mitts on his hands, as in the photo above — so we had a few hours of a tube-free Felix. Doesn’t he look fabulous? I dream of a day when his face looks like this for good!)

felix 3 1/2 months

 

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Comments

  1. He does look so fabulous and healthful in this picture. He really looks like Lydia’s brother. Awesome that he started sucking! Thanks for the updates.

  2. Felix is insanely cute. Oh my goodness.
    And I could barely make it through this post … I’m so so happy and thankful that things are looking up for Felix now. What a terrifying week. Praying this week is one of deep, tenacious hope.

  3. He is soooo cute!! The only way to explain him sucking is because of the good Lord Him self.

  4. Oh what a hard week and scary experience:(. I’m so glad though that in the midst of the there is the good news of being infection free and that there haven’t been more seizures. Prayers for you all.
    Marissa@BecomingKindred recently posted..Penny at a year oldMy Profile

  5. So thankful he is doing better. I hope and pray your heart is as well! He is just too cute.

  6. I could not even imagine what you are going through :( it is truly heartbreaking to read and we pray for you all! I pray that Felix will get healthy and strong quickly!

  7. Coriander says:

    What a darling child! I’m sorry about the awful ride of life you’ve been having. I’m so happy for you being able to feed your boy with a bottle! What delight! I thank God that you are pressing on through the bad times. Keep on woman, keep on.

  8. He is beautiful. You all continue to be in my prayers, for peace and hope and light in darkness.
    Laura @ Mothering Spirit recently posted..the trash tells the storyMy Profile

  9. Jennifer says:

    Kathleen,
    You, Felix and your family have been in my prayers. My middle child had seizures as an infant and I know how frightening that is! I wish rest, peace and healing for all of you.
    Jennifer

  10. God bless you and remember there is nothing imposible for God, just believe, we are praying!

  11. Felix the dreamboat.

  12. I believe God led me here tonight. I’m not sure if it was because you and that handsome Felix were to minister to me, I was to pray for you, or both–but that’s what’s happened.

    I was looking for a bag to carry my Beco baby carrier in and typed Beco into my search bar, but when I hit enter, I was brought here instead. I don’t remember encountering you before (though I must have to have your URL in my browser), but you’re a cloth diapering, babywearing, intentional living, non-violent, Christian, homeschooling mom whose child has special needs, so I’m surprised I can’t remember “meeting” you with how many opportunities we’ve had to cross paths. In any case, the Lord led me here now.

    One of my kiddos had seizures and lots of hospitalizations. None of our stays were as long as Felix’s, but we were at the hospital 3-5 days a week for a very long time. I understand the uncertainty and struggling with interacting in the medical culture while relying on it’s community completely, and yet not wanting to be subsumed by it. And I remember well the peace when that was no longer a part of our daily lives because we had returned to what others would call normalcy. The anxiety that it could be our story again has faded with each passing year, but isn’t yet completely gone. But mostly now there is a peace that God knows us, He knows what we each need for our salvation, and He provides to each of us, even little Felix, that which we need to draw closer to Him and His loving will.

    Tonight he provided a little piece of that for me through you. Thank you.

    I hope that the prayers of a momma on the other side of this season of life will bring the grace and peace of the Lord so that you can rest in the assurance that “All shall be well, and all shall be well, and all manner of things shall be well.”

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