It's probably no secret that I'm down in the dumps. I can usually pull myself out pretty quickly. But I'm having a harder go of it this time. Sometimes I just wonder if I will have the energy that this coming year will most likely require. For the most part I only look so far ahead - looking too far makes everything too overwhelming. But, trying to figure out which surgery will happen first (when I thought her heart surgery would surely be) is getting me down. Now I have to meet with her plastic surgeon and a new ortho doc in DC to try to get a handle on what needs to happen and when. Then I'll report back to her cardiologist in DC to try and figure out how it's all going to play out. I am very surprised how unsettled I feel about it all. This is when I wish I had someone (like, say, a medical professional?) to help me coordinate and figure all this stuff out. But there isn't such a person. The reality is that there isn't ONE doctor that knows as much about all of her specialty issues as me. Great. More fun for me!
Anyway, Harlie had an upper GI last week to check on her nissen fundoplication. It was awful. Not that it was "painful" for Harlie, but we had to hold her down under the x-ray machine and she hated that. Especially considering she had just gotten her ear tube the day before! They put some barium in her g-tube and then took x-rays to see what happened once it went in. The reason she had it is because she was back to vomiting every day again. They just wanted to see if it was still intact and that it was where it was supposed to be. The radiologist said that all was fine. Didn't know how or why she would be vomiting every day again. Oh well.
HOWEVER, I don't know if you remember, but I've been working towards getting her on a blenderized diet. I've heard so many good things about it and I really wanted to get her on it before we did the nissen (as I've heard that vomiting commonly stops when the child is on it) but there just wasn't time. Anyway, Harlie is now up to getting 3 ounces of applesauce and 3 ounces of green beans, plus 4 cans of formula (which makes a day's supply). And she hasn't vomited in a week! Well, that's not completely true - she vomits if she gags during feeding therapy or if her trach really needs to be suctioned, but those times don't count, if you ask me. So, I'm hopeful that this blenderized diet has some great benefits.
PLUS, we stumbled along another great accomplishment this week... On Monday her feed pump broke. So, called the people about it and they said it would take a while to get someone out. Bummer because that meant we had to feed her manually. So, I broke down her rate into 3 "bolus" feeds over 30 minutes. Her feed rate was 200 mls at a rate of 400 mls per hour. So, it took 30 minutes for her to be fed. Well, the 3 bolus feeds went great. So, after a while, we tried to do it in 2 bolus feeds. That worked great, too! And she wasn't in the least bit bothered by the change. No vomiting, no uncomfortableness! Now, today -she was fed in 1 bolus feed for all her feeds - and she did GREAT! YAY! No more food pump! No more depending on a piece of machinery to feed my child. I just need the right tubing and a syringe and we're good to go! It feels like a little bit more freedom. So, that's all quite exciting.
Last Thursday Harlie got her monthly RSV shot. That's never fun. And while there, Cooper got his well check and some shots, too. At 3.5 months old he weighed 14 pounds, 12 ounces. That puts him in the 50-75th percentile. None of my kids have ever been that high on the chart. I can't help but go and look at how that compares to Harlie. She was 11 months old before she weighed that much. And at his age she weighed just 8 pounds, 1 ounce - not even his birth weight! Crazy.
Well, that's all I have time for tonight.
Take care,
Christy
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6 comments:
Hi! I can only imagine how overwhleming it must all be to you right now with having totry to figure out all the surgeries. My heart goes out to you. I did have a question though abou the blenderized diet though. My daughter has a feeding tube and nissen and has since she was 7 months old and we still have a terrible time with gagging. She doesn't vomit, thank God, cause her nissen has already been redone, but she does gag a lot. She is still on prevacid and reglan and they have even put her on an antibiotic to help stop the gagging. We are trying to get her to eat by mouth and actually have her set up to go to an intensive feeding program here soon, put I was wondering about the blenerized diet and how it works. We can not bolus her AT ALL!! It puts her in to respiratory distress immediately and she will gag like no tomorrow. If you could e-mail me and give me some more info on the diet I would appreciate it so very much. My e-mail is tigeress1026@hotmail.com thank you in advance!
Christy, I am sure you will figure her surgery schedule out and I know that Dr. Jonas will be of help..he will know how important the heart is in regard to her back and jaw. It is a shame she has to even go thru another surgery or more but she is a trooper and with the support of mom, dad, brothers and your families we will help you thru this.
Hey Christy,
I'm sorry you're feeling so overwhelmed. I just want you to know that I'm here for you.
{Hugs}
Donna
Hugs my friend! The tide will turn in time. I'm so glad to read things are going well with the blenderized diet and that you've been able to eliminate the feeding pump! I was a little worried when you had the bad applesause experience but I'm thrilled it's going better. So now you can join me in singing it's praises. I wish more people would try it. PM your e-mail address if you want me to e-mail you my Excel file with the recipe.
Hi Christy, I'm so sorry you are having to go through all this. It just seems like so much for you to coordinate and so many doctors to deal with. Your idea of having a "medical professional" to give you advice sounds like just the thing you need. Just wanted you to know we're thinking of you and praying for you and Harlie and the rest of the family as well.
It is amazing. I try hard not to compare Maggie to her other sisters because well , she isn't. I hear you on the overwhelming feeling you get when it comes to surgeries. Maggie will be having surgery in Cincinnati in a few weeks so that means we have to uproot the family for it. But it will be so worth it. It will definitley be nice to be at a hospital where they treat many VACTERL kids.
There is a great group on the web called Parent 2 Parent ( www.parent-2-parent.org ) and they have tons of great advice for families with tube fed children. Lots of families there with children with just about everything you can think of so there is always someone there to answer your questions.
The one thing I do is pray to God for strength to get through each day and just take each day one step at a time.
www.caringbridge.org/visit/margaretreed1
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