What do we want? Bolus feeds! When do we want them? Now!

WHEW. This little bug has kept us BUSY this past week! Wow. The total g-tube pullout tally is at 4 right now. Last night and this afternoon were the 3rd and 4th. Poor bunny. Her stoma site is so red. Bolus feeds cannot come soon enough. The faster we get her back to regular feeding (where we give the feed over a short period of time and then remove the extension for several hours), the better it will be for her little tummy. And the methadone dosage is dwindling, as is her patience for pretty much everything as a result. Such a crankpot! Mommy Mandy took her out in the stroller to roam the halls of RMH after midnight tonight because that was the only way to get her to sleep. We are bracing ourselves for tomorrow; both the dose AND the frequency are being reduced. I think that’s a pretty big leap in one day. Waiting for baby’s doc to let me know whether we can add one more day in to soften the blow.

A little logistical update: We head home on Sunday, but will be back at RMH for a few days the week after next because BabyBug has six appointments over a four-day period. It will make everybody a lot happier if we don’t have to deal with that from home. Anyway, it will be nice to see everybody again after having been gone for… six days. After that, hopefully we won’t have to come back for a long time. I will be sure to post lots of pictures when we get home. The lighting in the room at RMH is kinda lousy so I haven’t gotten very many good pictures, but you can bet the Mamarazzi will be going wild once that little girl gets home. Watch out, kitties! Here comes BabyBug!

And finally, a philosophical musing.

I posted on one of the TEF/EA boards asking whether other folks had any tips for us about helping Leah get through this horrible withdrawal period. One of the moms there contacted me because she also lives in LA and her child has been a regular across the street at CHLA since birth. I had a ton of questions and she sent me to her Facebook page, where I spent a good chunk of time revisiting everything they have been through over her child’s several years dealing with these issues. I read something in one of her comments that really resonated with me. After her son came home from the hospital as a baby, a lot of people started asking, “So he’s okay now, right?” It was, of course, an expression of relief and shared joy at his homecoming after a long and difficult journey. I totally get it. But it’s a tough question with no good answer. When I read it, I felt a little stab in my gut. The simple truth is that no, many kids with EA are never quite “okay,” if by “okay” you mean “healthy,” “all better,” “out of the woods,” etc. That makes it a little bittersweet to get out of the hospital. We are THRILLLLLLLED to take Leah home and get to the business of living our new life as a family in our family home and not in a hospital room. But “okay” is going to have to be a relative term in our house. In a way it already is; I have multiple chronic illnesses and the simple question, “How are you?” always leaves me at a loss for an honest answer that doesn’t make people regret they asked. Like… I had my surgery, so I’m okay, now, right? Well, no – it’s more complicated than that. I usually just stick with, “I’ve been better, but I’ve been worse.”

We’ll have to navigate that question in the same terms for Leah – still more so, because even if she takes off running and never looks back when it comes to feeding, she still has Down Syndrome. She is still going to have to deal with medical and developmental problems for the rest of her life. She’ll still be at risk of hospitalization every time she catches a cold or flu. We’ll still have the possibility of a future heart surgery looming over our heads. And then there’s the whole question of her future once she’s an adult. So is she okay now?

But of course Mandy (always more optimistic than I am) pointed out that we want her to have as normal a life as possible and not have people always focus on her health problems and disabilities or just see her as a sick child. And of course that’s totally true – we want her to live life to the fullest, as independently and mainstreamed as possible, and not have her health problems always be front and center. It is easy enough for me to be pessimistic and say that her life is going to be a series of doctor appointments, but that would be a pretty negative way of looking at things. She’s going to have a great life and have lots of fun with the tons of people who love her and care about her and want to see her thrive. And if some of those people happen to be doctors and nurses and therapists, so be it. The more the merrier. In that sense, I guess she’s okay.

5 thoughts on “What do we want? Bolus feeds! When do we want them? Now!

  1. My favorite is going to be the kitty siblings stories. I can’t wait to hear how that goes. Sending good vibes westward 🙂

  2. I agree! I’m waiting for the entire series of “The Adventures of Leahbug and her Kitty Brothers”!! I can’t wait! I really loved your reflections at the end of the post, Lisa. I believe that miracles happen and dreams do come true, but really the everyday ups and downs of life — within a range of normal or a “new normal” — can be frustrating, frustrating when the ups don’t last quite as long as we’d like, and frustrating when the downs seem to continue…. You Mommies and your Sweet Leahbug have been through so much and demonstrated so much strength in the face of what usually causes so much panic. I don’t know if this will help, but it meant a lot to me: When my friend Genice was sick and going through so many tests and procedures, she wrote about getting in the “bubble” — and she and I went back and forth about the “bubble” until it became some kind of Cinderella carriage to hop into when things got too difficult or scary. To me, it was a way to distance oneself from the difficulties and to trust those who were given the opportunity to help and to just relax in a faithful, peaceful place through it all. I’m not enough like Genice, but you all three are! Find your safe haven in the loving family that you have created and that surrounds you. As I write this, I am reminding myself of what I need to do. Sorry to go on so long! Love and hugs!

  3. Awww, this post reminds me a bit of LiveJournal with the addressing of real lives and handling of real shit. Processing is beyond important when living a life frequently in the wringer but a lot of it ends up soooo good, with the highlights of your life being beyond amazing, blessed, warm and full of wonder. This is just my perspective as a person who’s seen a lot of crap, and continues to see it. It seems some people get the really good stuff and pretty shitty stuff too. I know you know what I mean…I’ve been greatly assisted of late with a Meditation app and totally advise you to look into it. Meditation can be as quick as five minutes and can really help handle hard stuff with aplomb and shit. I cant imagine having my kid sick but you never can imagine when something’s going to suck, hurt like hell from worry or grief or fear. Being able to manage this very unique situation emotionally (which can quickly become physical) is gonna be really important too, so process and write, write, write it down girl! I may preach to choirs, but only if they sing along*!

    We got sick this weekend so we couldn’t arrange anything but hopefully in a few weeks we’ll be all clear and able to help with things in HOME Home. Matt’s less than a mile away from there and I’m around Tues Weds Thurs especially now that we put Storm in daycare. You’re doing so well as a Mama, both of you are just tremendous individuals and people who I am so proud to know.

    *Has Leah heard the Buffy Musical yet?

  4. I hope the methadone adjusting goes as well as it can.

    This post evoked a lot of thoughts on living with disabilities and having our lives held up to the standards of the currently-abled, but I can’t get them to settle at the moment. Just know that this is a good post and you should feel good. You and Mandy make such a good team.

  5. So, we are finally catching up on blog posts! And we hope you continue to write them – and include pictures! – because it is terrific to have a detailed account of little Leah’s adventures! Lots of love from us to you three, always. xoxo

    (This is Lisa writing the next part):

    Not sure if future success stories are helpful or harmful — after all, I know it will be a long time until Leah is grown and it is important to “live in the moment” (something I continually struggle with! I am currently reading “It’s Easier Than You Think” by Sylvia Boorstein and it is very comforting.)

    But when I was living in California, I rode the handicap shuttle to my job each day. And another passenger was a woman with Down Syndrome. (I’m in Portland now but) at the time, she was 42-years old and worked full-time in the Safeway grocery store. She lived in her own apartment and cooked for herself and did her own chores, but it was a type of assisted-living house where she could call for help when needed.

    (I learned all this because we saw each other every day and she was chatty!)

    -L. xoxoxo

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