Heading to Texas Children’s Hosptial

Well, my mom has been complaining that I haven’t updated the blog about our decision to head to Texas, so here it goes.

For a variety of reasons, we have decided to have Apollo evaluated down at Texas Children’s Hospital. Apollo has an Upper GI and CT scan scheduled in Texas for October 24th and we will meet with the surgeon on October 25. We are heading to Texas not knowing if he will ultimately have surgery there. We are leaving ourselves an out and not committed to treatment in Texas if we don’t feel 100% comfortable with the situation. We do have the fallback option of having his surgery re-done here in Seattle if we choose.

The day after we booked our tickets, I received an encouraging email from Apollo’s pulmonologist saying he thought it was great that we’re headed to Texas and he hopes Apollo “comes back a whole new kid (and symptom free)”. I’ve all but given up hope that he will ever be “symptom free” but am thrilled that his pulmonologist was so encouraging.

Apollo’s stridor is back in full-force. Easily as bad as it was last year. He chokes and vomits nearly every day now (usually just once a day). It’s pretty clear to us that he’s getting worse.

We will be taking Tilly with us when we head down. We’ll need her to help with Apollo while we hash things out with the surgeon. If Apollo does have surgery in Texas, Chuck will fly home once he’s stable and out of the cardiac ICU. Tilly will stay to help me until Apollo is cleared to fly home.  Thanks to our computer-based schooling this year, she will be able to keep up while we’re gone.

The decision to take Tilly was an easy one. Adalia is attending the Community College and Judah isn’t much help with Apollo (I don’t mean this in  a negative way, they just have a different relationship). It was a toss-up between Tilly and Enoch, but then I saw there are restrictions at the hospital for kids under fourteen, which made Tilly just the right age to bring along.

So that’s the plan. We are hoping to be able to stay at the Ronald McDonald House, but won’t know that until we get there.

I will be trying to update as much as I can while we are in Texas, though I don’t know how often that will be. I’ll be taking my camera, but won’t be able to upload those photos until we’re home. If you want to keep up on us during our journey, check out our Facebook page, A Baker’s Dozen and Apollo XIV or follow me on Instagram (username: littleearthling).

If you are a blogger and interested in submitting a guest post for me to publish while I’m gone, send me an email.

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18 thoughts on “Heading to Texas Children’s Hosptial”

  1. Is there anything we can do as part of your blog community group to make anything easier for you and your family? Maybe some of us have points for hotels, or rental cars, or stuff you might need…let us know your wishlist, you never know we night be able to come with some of it…:) I’m praying for your trip and for Apollo’s time at the hospital.

  2. Well there ya go. Go to the BIG state of Texas and see what they have to offer. i love how you are going in with no expectations that they are chosen yet to do the actual surgery. You guys will know once you get there and get a feel for it. I have a good feeling for whatever that is worth.

    Sorry his stridor is worse. I am so glad they can get him in so soon. At least that seems soon to me.

    I am sure it is a huge burden off of you that you chose public school for some of your kids. That way this part is not a worry. Do you have grandparents that help with the other kids or will they be split up among friends like before? I will pray for them too!

    At least there is a ball rolling in Texas.Yeah! I also know it is very hard, but like you I have resolved that anything that gets “better” with our son is a bonus. I was tired of the “when his brain matures” …” ‘ maybe when he gets older this med will help…” I can say when you kinda except things as they are…even for the moment…it feels a bit less daunting. I know we are dealing with totally dif circumstances…but it helps.

    I know it was a different posting by you but I agree about the “he is brave” comment. I was in and out of Children’s Hospital where I live up until about the age of 18yrs. i wasn’t brave….i was dealt a set illnesses(probably since birth) that I had to deal with on a mostly daily basis..even after I also was given 3 surgeries and was also told I would be “cured”..I get that for sure!

  3. Wow, things are moving fast! We are praying for you and that sweet boy of yours!!!! Wish we lived closer, I would pop in and keep you company while you wait. May The Lord protect Apollo and keep him safe, as well as comfort you all during this stressful time. Praying for your kiddos back at home as well.

  4. Shannon Middlebrook

    I have been reading and following and lurking for awhile now:) I am so glad you chose Texas Children’s. You will be glad you did! The hospitals there are near each other and they call it the “medical center” for a reason. It is like a city in itself! The best hospitals and doctors in the world are there. We met once a long time ago when my husband was a worship pastor in Bellingham. We moved and are in Yakima now. My husband’s family all live in Houston, and I really want to know if there is anything we can do to help. They would love to host you, but they are an hour from the hospital. If that is something you are interested in, let me know, and I’ll make it happen. I will ask about other housing options, I know my mother-in-law stayed at an apartment that was owned by a nearby church. I’ll ask about that. Other than that, if you need help navigating the medical center, or anything like that, I’ve been there. I would be honored to give assistance. I’ll be praying. And again, I am glad you are heading to Texas, I believe you are doing the right thing!
    Shannon

  5. I will be praying for you all. I really hope you all get into Ronald McDonald House! It has been such a blessing to our family to have RMH to crash in after a long day at the hospital. We have stayed their over 10 times in the past 12 years. Praying that Apollo will have a speedy recovery and be happier and healthier than ever by Christmas.
    Blessings, Dawn

  6. So I have been reading your blog for a really long time and I have never left you a comment. I just wanted to say that you will love Texas Childrens. I live in the Houston area and my 4.5 year old twins have both had surgery there. We always felt as comfortable as can be. With that said, if you need anything while you are down here please let me know. If you need directions for anything or need anything brought to you please do not hesitate to ask. I will be praying that you get the answers you need and that the wonderful doctors here in Houston can fix your adorable, curly headed sweetheart Apollo. 🙂

  7. You may want to consider setting up a webpage for Apollo at CaringBridge.org I have a page I started after my son’s brain injury and it was a fast, easy way to keep the extended family and friends updated. I was able to use the hospital library computer to make the updates.

  8. Leave your camera at home and focus every ounce on your son getting better. We don’t need pics. He needs you. Praying for you.

    1. bakersdozenandapolloxiv

      Jill, it’s in my nature to record these experiences both with my camera and in words. It’s how I process things. I would be taking my camera and writing about it even if I didn’t have the blog. I have a photo book I’m working on for Apollo called, The Story of Apollo’s Heart. I want him to know his entire story some day. Don’t worry, I don’t feel an obligation to post photos here. The blog is simply a byproduct of my recording our life, not the reason for recording it. But thank you. You can bet all of my energy will be focused on Apollo.

    1. bakersdozenandapolloxiv

      Well, we’re in the process of potty training. He’s been ready since before his birthday, but it was too hard to keep his tube out of the toilet! He still wears diapers and we potty train (in undies) when we’re around the house. He is officially weaned, though! The last time he nursed was one week ago. This was my decision (he’d still happily nurse) but I wanted to be done before his next hospitalization.

      1. Hooray for weaning! (I know it’s bittersweet, but it sounds like it’s going to be helpful in this case). And yay on the potty training!

  9. I cannot seem to find/access your facebook page. I’d love to follow you and i’m happy that you’re going to see what Texas Childrens (what city are they in?) can do for you?

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