Talking About Going Home (And a Big Fat Prayer Request)

We had an unusual day this week: the Infectious Diseases doctor — and the main doctor overseeing Felix’s care — came with us on the two-hour drive home to check out our house. It was my first time seeing my home since the beginning of December (almost four months).

We might be able to take him home soon, but we have to make sure our house is safe for him. The enzyme injections have begun to help him build up a bit of an immune system but it’s not even close to normal yet. He’ll still be in isolation until gene therapy (we’re still hoping for June), and then for several months after that as well. Lydia won’t be living with us, since she’s a swirling vector of germs. We have to be very careful not to expose him to viruses, bacteria, fungi or or spores from the outside world.

It was an encouraging visit. Our doctor thinks that as long as we keep the windows closed, don’t use any fans, keep his area scrupulously clean, and take the appropriate precautions before handling him (sanitizing our hands, etc), we can keep him on the main floor of our house. We can’t accept any visitors. We have to remove anything that will gather or stir up dust. We have to routinely sanitize all of his toys. We’ll also have to boil any water used for feeding or bathing him. Things like that.

I only cried when she told us we couldn’t use cloth diapers or the special baby hammock we’d bought him. I wasn’t surprised, but I was still sad.

If he continues to do as well as he has been doing, we might be able to take him home in a few weeks. We just have to work out how things will work with visiting nurses, hospital visits, etc. He’ll still have to get regular medicines through his central line. He’ll still get most of his nutrition through the NG tube, but we can take care of that.

I’m terrified and excited. There are so many ways an immune-deficient person can get sick that I never could have imagined. Who knew that houseplants could be dangerous? Or a ceiling fan? I’m so scared something will happen and it will be our fault. But I’m also looking forward to sleeping in my own bed, cooking in my own kitchen, and being only ten minutes away from Lydia. Just being able to feel a little more normal again.

And while I’m talking about my anxieties, I want to articulate my hugest prayer request:

Please pray that Felix can remain free of infection or anything else that might exclude him from gene therapy. Pray that he makes it to gene therapy and that it works, restoring his immune system, so he can live a healthy life.

Felix needs to be in perfect condition to be eligible for gene therapy. Since it’s experimental, the doctors only want to test it on the best possible candidates. They want the best possible outcomes so that it can be approved as a therapy. That means he needs properly-functioning organs (including his brain) and he can’t have any active infections. He has already gotten scarily close to losing eligibility when we discovered he had CMV, and again when he started having seizures. My greatest fear is that he will lose his spot and lose his best chance at recovery.

To be honest, it feels like all my previous prayer requests have fallen flat so far (i.e. that his initial screening would prove to be a false positive; that Lydia would be a donor match; that he wouldn’t get any viruses; etc), but I just don’t know what else to do. Prayer is all I have.

Thanks again for all your love and support.

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Comments

  1. Kathleen, you all continue to be on my heart. I so hope you can go home soon. I know that being closer to Lydia would be so wonderful. And yes, prayers that he can do the gene therapy! He is amazing.
    Haley @ Carrots for Michaelmas recently posted..Why Mary Has to Hold the Cards: Thoughts on the Annunciation, Assault, and Free WillMy Profile

  2. Maria Klassen says:

    I pray with you and for you regularly. Miracles are definitely still happening today. And while you might feel like your prayers have gone flat; lets pray together for God’s miracle in Felix’s life. We know that God has a plan for him as He does for all of us.
    We will continue to pray. Yay for being close to Lydia and being home. Keep strong Felix Victor, in Christ’s name we pray. -Amen

  3. Big, big prayers for gene therapy!!!

  4. Praying for you Kathleen and Felix, Lydia and Ben. God has told us that everything we ask for in prayer we will receive, it just may not be in the form we expect. so keep praying Kathleen and keep sharing your story so we can all pray for you too. much love xxx

  5. Melissa Fulmer says:

    Praying for you all. Felix you can do it!!! :) You all have come such a long way thanks for sharing your life :)

  6. Your intentions are especially in my prayers. I remember being so scared, excited, anxious and hopeful bringing my oldest daughter home the first time with her unique set of health needs. We were in the hospital just under 2 months with her, but it felt like I was kidnapping her bringing her home. Definitely a rush looking out at the hospital from the roof of the parking garage.

    I wish I could do more for your family as you go through this. Thank you for sharing your story and allowing us to pray for you guys. <3

  7. We have never met and are unlikely to ever meet in person, but I want you to know I pray for you and your sweet baby all of the time. So many prayers from the very bottom of my heart for you and baby Felix! God bless you all!
    Janie recently posted..Takin’ What They Givin’, ‘Cause I’m Workin’ For A Livin’–A Working Mom Duly Chastised By MaryMy Profile

  8. Sister, your big fat prayer request is now my big fat prayer request. You’re in my prayers daily. Oh, how I hope you can take him home (although I know it won’t be normal, it will be closer, like you said). Holding you in the Light.
    Abbey @ Surviving Our Blessings recently posted..Extra handsMy Profile

  9. Prayers for you all and especially for this important intention! Hoping for the very best for you!
    Christy recently posted..Seven Quick Takes vol. 116My Profile

  10. Praying Big Fat Prayers for Felix!
    juanita recently posted..My Grandson!My Profile

  11. Hi Kathleen, I found your blog pretty recently, shortly before Felix was born. I am still here, and the things you post still interest me and touch my heart! I don’t normally comment on any blogs, but I wanted to let you know that I’m praying for Felix and your family.

  12. I have prayed for Felix and your family. So many people are praying for Felix’s healing. I have nothing else to say but this verse:

    2 Cor 12:9,
    My grace is sufficient for you, for my power is made perfect on weakness.

  13. An anonymous friend says:

    Praying big fat prayers!

  14. Praying for all of you!!
    Laura @ Mothering Spirit recently posted..until it stays openMy Profile

  15. Praying for this

  16. Prayers for Felix and your family are continuing!

  17. I hope that Felix is fine now! I’m blessed to hear your stories. I’ll definitely include you in my prayers! God bless!

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