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A Visit with the Dietician {Seattle Children’s Hospital}

Another day, another visit to Children’s. Life with a sick child is exhausting, plain and simple. There is always something. Four tube feeds a day, frequent diarrhea, continual trips to Seattle, very little sleep. Believe me, I know it could be much, much worse. But knowing that doesn’t get me a night’s sleep or help me clean the house or care from my children.

Today’s visit was just to see the dietician to make sure he is doing well in the weight gain department, which of course he is and to review how things are going. After standing on the scale (25.6 pounds), he ran over to the cart with blood pressure cuffs and pulse-ox machines and said, “You take my blood pressure now?” to the nurse.

The kid knows his medical equipment.

{Apollo grabbed this sign out of the window and said, “This MY sign. It says Apollo XIV!”}

While we were in with the dietician Apollo’s pulmonologist, Dr. R, poked his head in and said, “I know you don’t have an appointment today, this is just a social visit.” He asked how Apollo was doing and commented on his weight gain (and hair). He isn’t happy that Apollo no longer wants to eat (yay!). It’s nice to have someone agree that not eating anything by mouth is not the way we want to go. Dr. R said, “Well, he’s learned. He’s learned that eating means suffocating and he doesn’t want to do it.” With Apollo’s unique anatomy, when food gets caught in his esophagus (which it always does) it pushes on his floppy trachea and makes it difficult to breathe. Dr. R asked about the cardiologists’ plans for fixing the artery causing the compression, and I simply answered, “They said they can’t fix it”. Then he asked about how long the g-tube was for…and I answered, “Maybe a few years, maybe forever”. It is so frustrating to have no real answers. I am counting the days until next Tuesday when we see Apollo’s cardiologist again.

And now I’m off to get some sleep.

6 Comments

  1. Mary

    He is SO cute and it’s so good to see his weight gain. I know that this is so exhausting for you and you are all in my prayers. The long drive to Seattle adds to your heavy load. You are a great Mom and are giving your children a wonderful example of doing whatever it takes to help your beloved child. They will all be better parents someday because of what they have observed in you.
    Blessings…

  2. Jo

    I think my last night, and this morning was a little like your entire life and I respect you EVEN MORE! I dont even have many children, I just have 2. My daughter threw up all night and we ended up in the ER for 5 hrs today. Rather than admitting, they just kept her until they felt she was stable enough. High temp, vomiting, aches, headache horrible, she has a gastrointestinal virus. Something that has to run its course, but she was such a sick girl! She still is, but it was 1 night and day. I am tired, my head aches, my house is a mess, I was hours behind on chores. How do you do it with so many, all the time? I know your kids help you out so much. If I lived closer, I would want you to let me come clean for you! And hang out and let you take naps!

    • bakersdozenandapolloxiv

      Jo- I hope your little one is alright! Basically, I am always tired and always behind one something. I just. want. sleep.

  3. Peg

    Hi Renee, a quick question. The food that goes in Apollo’s feeding tube, is that a specially formulated mix or is it regular food you fix for your family and then put in a blender so you can feed it to him? Praying for his good health, though he looks like he’s healthy and happy. Loved the pictures of your hike the other day. All your children are cute.

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