|OK, I am at work...shhh, the kids are sleeping...LOL|
An ounce a day weight gain is possible even with vomitting, it's just really really hard. Do you have a goal weight before they will do the VSd repair or not? Are they just going to let him go and see hwo he does or does teh VSD need to be repaired?
I would do the UGI first to rule out any structural issues first. But I really feel it is probably a DGE (gastric emptying) issue. We saw this as well and the need to be on a higher concentration of formula only makes it worse. But, they need it in order to gain weight. It's a catch 22.
I would most certainly look for a new GI if the current one and you do not mesh well. We suffered way to long with our first one and that is why Jedd ended up 100% tube fed....in stead of a little tube fed. His pain was too great and the GI didn't want to do anything at all for it.
Get on a high dose of a PPI, Jedd did great on Prilosec but we needed a liquid to go in the tube. With a choice in the matter I'd go wtih Prevacaid.
Keep a log of what is fed orally and when it occures. With a VSd they will be quick to tube fed if the hole is too big. We asked for Jedd and by that point he was taking about 9 ounces in a 24 hour period.......nothing more. He was loosing weight quickly and was FTT already.
The tube saved his life, I truly believe. I hope your Ped visit went well.....we loved ours and she was our saving grace and full of common sense.
When and if you get to tube feeds, let me know, I can give tons of advice once that happens. It will not surprise me if it does as hard as it will be. Esp if the hole is large and causing feeding issues.
Jedd had a combo of horrible weakness from his HUGE VSD and his GERD. He had a double whamming, it was just inevitable we would end up with a tube.
As hard as a tube will be, the number one goal will be to get the child to grow enough so that you can do surgery. For us, the goal was 12 lbs. It took 6 months to do so and by that time he was soo FTT and just not doing well health wise the choice was made to bring him to the board around 5 months old and decide to do surgery. It happened very fast by that point. Within a month we were in for the repair. He needed it badly.
Back to reflux meds....when you get on a PPI, watch the dose as you see weight gains, the meds will need to be adjusted to keep him comfy.
Also, as far as meds for delayed gastric emptying....Reglan worked the best for us, but we saw really bad irritablity and had to DX it, we lasted about 16 weeks....he was just a blubbering mess, whinny, screaming, and just really really fussy!! Once of the med he did fine, he was on it at around 9-11 months old....a bit longer, can't remember the exact age.
We used Erythromycin (EES for short). Taken in low doses serveral times per day can make the belly empty faster. Once we found the right PPI dose coupled with the right EES dose, we had less vomitting.
This in truth took TIME as you have already heard.
I like to say that TIME is a refluxers BEST friend. It truly is. Jedd didn't follow the normal time schedule with GERD. We didn't really see any difference until about 1 year old. Then we saw another jump around 18 month and then about 2 years old, things seemed to settle down alot!!! By 2.5 we saw VERY infrequet vomitting and now at 3.5 we rarely see if, but we still do.
Some kids just will need meds for life for their GERD and Jedd is falling into this category. We have given up on trying to wean him and just give them to him twice a day.
A split dose is always best. We also do 1 dose of mylanta each day about 30-60 mins before bed. This was added in about a month ago, to try and stave off another med increase.
Please don't feel like you are alone, you most certainly are not. I can tell you, I survived it and you will too. It may not feel like you can, but you will. My favorite thing/quote to recite to myself was: This Too Shall Pass. It really will.
It may not be better tomorrow, or the next day, but very slowly over time, things will get tiny bits better and tiny bits better and by the time you blink....you will see much better.
Let us know how that visit goes today!!!! ((HUGS))