I don't feel much like a long post tonight. I'm tired and spent the day working outside and running errands, so I'm pooped.
Jonah is hardly hoarse at all anymore. Praise God! Man, when you guys say you are going to pray, you really don't hold back. He sounded so much better yesterday, and even better today. He's still not eating as well as he has been the last couple weeks, and I'm having to go slowly with his bolus feeds (I haven't done more than two ounces) or he throws up. Tonight he threw up when eating by mouth, and it had a little blood in it. Not really enough to get in a panic about, but even a small amount is enough to make me nervous. I'm hoping it was just from his nose or a blister in his mouth, and not anything related to surgery. As long as the amount doesn't increase or it doesn't keep happening, I'm not going to worry. He's had gushers with a little blood in them on several occasions before. (Can you tell I'm talking myself down?)
I'm frustrated about several things related to the g-tube, but I think it will grow on me - especially the first time he gets sick or has a blistered mouth and can't eat. It just works a little differently than I expected, and so I'm a little disappointed. I don't really want to go into it now, especially before I talk with Jonah's pediatrician and regular nutritionist (the one we talked to before leaving the hospital doesn't know much about Jonah specifically, and was going on general EB information). Let's just say that we're currently being told that Jonah needs 1,000 calories a day.
You read that right. ONE THOUSAND CALORIES.
Not. Going. To Happen.
So anyway, I'm just stressed out, and the g-tube is supposed to REDUCE the stress, not increase it. But like I said, I know it's just because I'm overwhelmed and I have so much on my mind and so many projects that I'm wanting to do around here, and a to-do list that's a mile long.
And I still haven't sent thank you notes from Jonah's party in FEBRUARY.
I don't really have an excuse. I just haven't done it.
Anyway, I think I'm going to bed now. Danielle, The Design Girl has started my blog makeover, and I'm getting really excited. Not sure when it will be up, but my guess is it should be within the next couple weeks. Can I get a woot woot???
20 comments:
Don't worry about the blood. While my girl doesn't have EB she has a condition where her digestive tract blisters constantly (from her mouth all the way to her stomach). When her gtube was put in she threw up a little blood as well. Our doctor said that it was probably from a blister around the inside of the stomach around the gtube.
He said that some babies without skin problems get blisters around the inside of their gtubes when they are put in (if that makes you feel better. :)
Catalina
Woot woot! So glad that he's doing well and the new blog will be up and running soon :)
could you do some of his feeds overnight (instead of bolusing during the day) so that he gets more calories?
good luck. I hope it works out. the first few weeks of the g-tube are miserable and after that, it is your best friend.
Ditto to what Sarah M. said above (overnight feeds & the love-hate relationship with the g-tube)!
I know first-hand that overnight feeds are a pain, but it makes it a lot easier to get those calories in. Typically developing toddlers need 900-1300 calories per day. You can imagine that special guys like ours need even more! I've heard that a good rule of thumb is to say that, on a daily basis, toddlers need 40 calories per every inch of their height.
We were pretty frustrated with the Mic-Key the first few days, too, but you'll be able to start a feed in your sleep in no time! :)
I haven't visited your blog in quite a long time. Jonah looks amazing - I LOVE his hair! Praying for you all.
Love -
Stacey
woot woot!!!
Can't wait to see the new blog! I'll pray that the blood (and the gushers, for that matter) stop,and that Jonah can work up to 1,000 calories. I'm seeing a CFA Peach Milkshake in his future...
Hope you rest well this evening!
Love from TX!
Laura
{Breath} One thing at a time.
Praying.
and a Woot Woot!
Whew, I'm sure that learning any new procedure related to feeding is frustrating and blood is always scary. Glad everything is going so well, but I can understand your "up and down" feelings. I'll still be praying! Congrats on all the gardening accomplishments today!
Thinking of you and happy to be making you smile via Twitter. ;) Love you.
Glad to hear Jonah is feeling better. G-tubes take time to get used to for both you and baby. I worked for 5 years for a home infusion company (teaching and following tube feeders, mostly adults but some kids too). There are about a million different formulas from 1cal/ml to 1.5cal/ml regular digestion and elemental (already broken down for easier digestion, usually tastes really bad but via tube...) I would be happy to help with any questions you have, if I can help.
Keeping Jonah, you and Matt in our prayers.
I used to do my feeds overnight-it was simply easier and I managed to take in more that way. I can't really articulate it, but to say it was easier.
Keeping the prayers coming.
I just wanted to say thank you for talking so highly about chapel hill. I am heading out in a hour for our first appointment at the hospital, with a pulminologist and it really helps to know you have be happy with your treatment. now hopefully i wil just not get lost on the way
Once you have had the g-tube around for a while, and been through your first illness, you'll love it. This is the first winter we weren't in hospital/ER/Chris wasn't really sick b/c the g-tube let us keep him hydrated (love that I can run pedialyte via pump when he's sick instead of waking him up every 20 minutes to syringe it in!).
Chris requires 1200 - 1400 cals. We don't always achieve that, but night feeds and high cal formula (the stuff that's 1.5cals per ml so you can 375cals out of a 250ml can) it helps pack calories in without requiring so much liquid intake.
Chris still (nearly a year after getting his gtube) cannot handle bolus feeds no matter how slow I do them. We just set up the pump, some distractions or had him wear the pump in a backpack (not likely an option for Jonah - but on the stroller would work while you walked).
Use your dietitian and GI people, ask for tips. It will get easier, promise! It's one of the best things we've done for Chris' care. He's not EB but he's got multiple heart defects.
Wendy
I guess I am confused as to what the g-tube is supposed to be for. Sure would like a medical post on all the what for. Hang in there. Ask God to calm you. :)
My opinion on the thank you cards: GOOD GRIEF DON'T WORRY ABOUT IT!!! I'm sure you said "thank you" at the party and that's good enough. I think if anyone is expecting a thank you card from you right now then...well...they shouldn't be. Personally I only give official thank you cards if I don't personally get a chance to thank the person.
Keeping you in my prayers, Patrice.
You just sent Thank You online! Take that one off your list, I don't think anyone would be offened to not receive a personal hand written thank you note under your circumstances. Keep up the good work and give that baby a hug from Dothan, Alabama!!!
I'm so glad he's doing well and it will get easier over time. I had a dream about sweet Jonah last night. I dreamed he was peacefully sleeping, all wrapped in his bandages and he had the sweetest smile on his face he was in no pain and you could just see his innocence. You have a wonderful son, but of course you already knew that! Thanks for sharing your journey with EB I know great things are to come for Jonah.
Leia
What formula are you using for the tube? I just recently got my j-tube out (went into the small intestine, not stomach), and I have 2 cases of formula left. If he is using Jevity, I wouldn't mind shipping some cans up your way.
Let me know.
Emily
I can understand your frustration with the G-tube. I didn't know much about it either and you are already educating me on it for our near future of it. We go to our EB clinic this Thursday and will be discussing this option for Carson. Keeping you lifted in prayers...as always and try not to feel so frustrated. Time will pass and this will be old hat soon, just another thing us EB moms do for the better of our kiddos. God Bless You Guys!
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