Apollo tries to looks so sweet and innocent…but notice that spray bottle in his hands? Yup, he was shooting me with it as I took this pictures.
Oh Apollo…nothing will ever be easy with you, will it? Tomorrow will be three weeks since his g-tube was placed. He’s already weathered an infection at the site, five days of diarrhea from the antibiotic and now has horrible granulation (an overabundance of healing tissue) around his site. He gained no weight last week and has only gained a total of five ounces since his procedure May 4. I am hoping his lack of weight gain is related to his diarrhea. If he doesn’t start packing on the weight, I’ll be back at the doctor’s office demanding they test him for absorption issues this time.
This is picture of his tube post-infection and pre-granulation.
He still isn’t sleeping well. Up every hour or two at night. Crying, yelling, thrashing around, talking. It is very hard to resettle him at night. Next week we have two appointments (pulmonologist and GI doctor) in Seattle- one on Tuesday and one on Wednesday. That’s four plus hours of driving two days in a row….I’m tempted to just stay the night there Tuesday, but then it’s two full days away from the other kids and trying to make arrangements for them.
But, he’s cute and bright as ever. Talking more and more each day. Next month is his birthday…bitter sweet as he turns two and he is no longer a baby.
By the way, if you are a blog reader who’s been praying for Apollo (or sending good thoughts…or just think he’s dashingly handsome) and would like a little card I made up for the friends and doctors who have helped us with him, send me an email (bergerondozen at yahoo dot com) with your address and I’ll pop one in the mail to you.
How much formula is Apollo getting in the G-tube? When my sister was Apollo’s age and tube fed she was on continues feeds 23 out of every 34 hours she has a small portable feeding pump and a little backpack with the pump bag of formula and if it was hot out a small ice pack she wore her pump everywhere even to the beach
He is now up to 720 ml a day.
23 out of every 24 hours 🙂 basically she was always eating except for a hour or so usually in the evening or for baths
You may have already tried this, but whenever I schedule cardiology and pulmonology appts at Children’s, I always tell them I NEED them on the same day and they have always been able to work it out. I just tell them that we are coming from 2+ hours away and that we can’t have appts on different days. They have never given me trouble before. It may not be possible for these appts if they are coming up soon, but maybe worth a try the next go round?
Jana- we usually get appointments on the same day, but you how it is with clinics…if the docs are in on the same day, nothing can be done 🙁
He has such beautiful eyes, I could stare at them all day 🙂
Gee, it just never ends with the little guy! May I say that he is one cute dude with those dark brown eyes and those curls. Surely something’s got to give and things will settle down, he’ll gain some weight, start to sleep better and no more issues with the G-tube. I know you are at your wits end and I take my hat off to you for your strength and perserverance. You are one strong Mama! More strength to you,
I have been praying for Apollo since his birth but I don’t need a card (save postage and develop an e-card to email) – just seeing his sweet little face is enough (plus all those other great kids of yours!).
Joolz
What she said 🙂
i wish the news was better for this cute little guy…oh my the prayers he needs.
instead of you sending cards…we need to be able to send you cards of encouragement!
He is so stinkin’ cute…
Praying the weight gain begins now that the infection is gone.
I really hope things improve for Apollo, I know how worrisome it can be when your little ones don’t seem to want to grow. For the granulation, there’s a cream called Kenalog that might help. I know a few moms who swear by it (use a tiny amount a few times a day). Also, friction makes the irritation worse so lots of people use a pad made from panty-liners around the site, it really seems to help. There is a tutorial on http://www.squaregoods.me. I can’t remember the post date but I sure you can search for it. Good luck and prayers.
Always praying for Apollo and y’all
Look at those curls! You’ve got a seriously cute kid. And I know the pictures you’re showing might be from the “highlight reel”, but he looks happier in recent photos — not as dead-on serious as before.
So, absorption probs maybe?… but he never had diarrhea before the G-tube, right? So probably not an intrinsic gut problem, but could be something about the formula? (Osmotic load, some carbohydrate he’s not digesting well?) If you have any concern about allergy or carbohydrate intolerance, you could ask whether an elemental formula (contains only very simple molecules, so very easy to absorb and not allergenic) would help.
Robyn- Nope, no diarrhea before the g-tube. It is cleared up now, so I assume it was from the antibiotics. I forgot to weigh him before his morning feed today, but after he weighed 23 pounds…up five ounces from last week. I’m glad he looks happier…he has some good and some bad days…
(As always, not my area of specialty, just thinking out loud.)
11114 212th St E Graham Wa 98338 My kiddos faithfully remember to pray for Apollo. He has a special place in our hearts! Do you have good insurance to cover the cost of the med. equipment that Apollo uses? I have some extra things that you can have if you don’t. Just let me know.
I find it so crazy that I have felt so burdened to pray for Josiah since I first heard of his struggles…long before I even DREAMED of Apollo having a heart defect. God is amazing!
Poor guy and poor mom. We have been praying that the feeding tube would help him make progress. We will continue to pray that answers are found and that in a few months you will be able to see the fruits of your labor!! Until then may the Lord grant you peace, the doctors -wisdom and sweet Apollo, healing!!
Thank you!