Grayson saw his GI doctor this morning. He has been vomiting a lot again (3 times just this morning) and not only is this awful for him, health and comfort- wise, it’s just been a pain. I’ve been getting him dressed at the last minute before we go anywhere and covering him with a huge bib and blanket in the car, just in case. I have to wash his crib sheets multiple times per week (and anyone with a baby knows how annoying making up a crib is), and sometimes have to give him baths in the middle of the day. It’s annoying.
Since Grayson got his tube a year ago this month, his weight gain has been steady and consistent. He’s never been above the 6th percentile, but that’s a lot better than being below 0, which he was for a long time. But today when the nurse weighed him, he was down to 22 pounds, 4 ounces. Not even a month ago, he weighed 24. I got a little panicky.
The doctor wasn’t too concerned about the weight loss, but did agree we need to do something about the vomiting. Next week, if we can get on the doctors schedule, Grayson will be getting a GJ tube to replace his G tube. The GJ tube will bypass the stomach so his formula and medicines will go directly into his intestines. This should solve the vomiting problem. The big negative of this tube is he will have to be on continuous feeds again- this means attached to his pump 24 hours/day. NOT FUN. The tube will be placed under anesthesia but should be a quick and relatively easy procedure. However, anytime Grayson is under anesthesia, he gets sick with respiratory issues. Bleh.
I also had an OB appointment this afternoon. My doctor cried and hugged me when I told her about Grayson and his Leigh’s diagnosis. Then I cried when I talked about the baby and my fears about it being healthy, and she cried and told me this baby is a gift from God. I told her I absolutely agreed, but that God has a quirky sense of humor when it comes to my family. I almost had a panic attack when she measured me for the first time today. Our first “clue” something wasn’t right with G was I measured small in my pregnancy, although that started later- around 30 weeks (I’m 22 weeks now). Thankfully, today, I measured on track and heartbeat was perfect. But again, perfect measurements and heartbeats don’t mean much to me these days. I guess that’s just how it’s going to be.
On a sort of unrelated topic, I have a friend whose son also has Leigh’s and their story is featured on ABC News today! Her son sees the same doctor as Grayson and she’s quoted in the story too. Click here to read their story. Note: The article mentions a clinical trial for a drug that has shown to reverse the progression of Leigh’s in some patients. Unfortunately, we found out last week that Grayson does not qualify for the trial at this time because he doesn’t have a genetic diagnosis. We are extremely disappointed by this news, but we hope the criteria will change at some point and he can get on the trial.
There is so much in my life right now which I have ZERO control over. And there are so many other families in similar situations- life is just hard. Thank goodness for prayer, family, friends, carbs and cheese, and mindless television. Happy Wednesday friends!
I'm sorry things are rough.QuickZip crib sheets. RUN. Order them NOW. They will change your life. I swear. I can change a crib in 30 seconds! http://www.cloudsandstars.com/ I really do swear by them. Pink puffy heart love. I'm serious here.They can probably do the switch from a g to gj without anesthesia – we did. (Had to dilate up two fr sizes even.) It wasn't the most pleasant of 20 minutes, but if he has otherwise normal anatomy it shouldn't be necessary to sedate. It's not painful at all, just the fear of being held down. And they usually let us stay in the room to help that part.Hopefully things will start looking up for you guys.
Oh my, what an emotional day for all! So sorry for the weight loss and need for the GJ tube. :o( Thinking about your all, sending love. xoxo-
I so wish Grayson could be in that trial – but maybe he will eventually. Bummer for you guys – it sucks.Making a crib is hard work. Making up a crib while pregnant? UGH. I feel for you. I just hate that job.I sure hope the new GJ tube works well for Grayson. It sounds like it should. But I wonder – will he feel hungry since that comes from our stomachs? Or maybe it doesn't come from our stomachs? I don't know.
Sending love and light. Wish I could write more but know I'm reading and thinking of all three of you all the time.
Ok…so here's the dilemma. Memorial Hermann won't do a gj tube change without anesthesia! We have it done at interventional radiology at Texas Children's and they ALWAYS do it without anesthesia. For some/most kids it's a quick and painless thing (Reagan has never had any issues with it…she goes in smiling, comes out 5-10min later still smiling)! But for some kids (usually those with a complicated anatomy), it can be a difficult long drawn out process! Since Reagan doesn't have any of those issues, I'm thankful we do it at Texas Children's…anesthesia for such a simple procedure just seems too risky…but that my personal opinion! All that being said, the gj made a huge difference in her nausea/vomiting/weight gain. It's been a lifesaver! Please don't hesitate to contact me if you have any questions or just need some reassurance!!!
Crib sheet tip – I put on 4-5 sheets at a time, putting a crib protector (one of the ones that's the size of the whole mattress) inbetween each sheet. That means all I have to do in the middle of the night in cases of vomit or leaky diapers is rip off 1 sheet and the cover. No fighting with a new sheet to get it on! This so changed my life 🙂 Being out of control is so hard. Here's to some of your stress backing off soon!!!
I am still praying for you and your family and your sweet baby boy! Continue to look to the Father for His comfort and His guidance and His wisdom. Blessings to you today!
I love that your doctor reacted so kindly to your news. I know that every doctor's visit, both for you and Grayson, is scary and you don't know what to expect. Continuing to think of you as you figure all this stuff out…
I hope the GJ works wonders for him!
One more thing….the gj tube didn't necessarily solve Reagan's nausea/vomiting problems (she still has episodes, but they are not as frequent and no longer every day). It doesn't stop whatever was causing her to be nauseous (obviously mito related), but it did stop her from throwing up her formula and solved any dehydration concerns (which is a big deal)!!!
Yeah, I'd not say the gj solved any nausea/vomiting problems here, it just kept the food/fluids in. And he was still allowed to eat by mouth whatever he wanted, so it was kind of best-of-all-worlds as much as it can be with continuous feeds.If he still has issues, ask about drainage bags, you can drain the stomach (and depending on how much comes out, you might have replace those fluids). That really made the big difference, especially when he was sick. Kept him comfortable overnight, etc.The gj is much scarier in theory than in practice. I kind of loved it, except the continuous thing.
I hope the new tube helps him.Have you asked about Funduplication surgery? That may also help with the throwing up. My niece had to have that done when she was a few months old. Just another thought on something to ask about. http://en.wikipedia.org/wiki/Nissen_fundoplicationThinking about little G.