Damn you Ativan and Methadone!
We were sent back to the hospital on Wednesday for a loss of 5 grams. Once we got there it turned out that the cause could have been withdrawal from her two med's that we are trying to ween her off of. Has anyone have any experience with weening their child off of either of these med's? It has been a huge challenge to say the least.
Also, we discussed with the doctors about a G-tube-- anyone have this put in yet? Allie is 2 months old, and will be going in for her Glenn Shunt at three months due to having a stent put in her shunt and her left ventricle being really large from all the work. She is not a great feeder, but does her best (bless her heart). I kept on thinking my daughter will be the one who will be different from all the rest. Starting to wonder if this is naive of me? She is constantly pulling out her NG tube and it really bothers her--so I have come to the conclusion that I am ready for a G tube for her and I think she is.
Over all she is a very happy baby, smiles, and coo's. It just breaks my heart what Allie and all these poor children have to endure.
Also, we discussed with the doctors about a G-tube-- anyone have this put in yet? Allie is 2 months old, and will be going in for her Glenn Shunt at three months due to having a stent put in her shunt and her left ventricle being really large from all the work. She is not a great feeder, but does her best (bless her heart). I kept on thinking my daughter will be the one who will be different from all the rest. Starting to wonder if this is naive of me? She is constantly pulling out her NG tube and it really bothers her--so I have come to the conclusion that I am ready for a G tube for her and I think she is.
Over all she is a very happy baby, smiles, and coo's. It just breaks my heart what Allie and all these poor children have to endure.
Comment
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Comment by rainsplats on September 17, 2009 at 2:02pm -
Summer has a g-tube.
She had an NG before the glenn, and an NJ (goes into the first part of the intestine instead of the stomach) tube after the glenn.
The NG was heavenly compared to the NJ. The NJ needs to be placed under xray. Every time she (or her twin) pulled it out, it meant a long trip to the hospital. She really needed the NJ when she had it, but I was really happy to switch to the g-tube.
I was worried about getting the nissan and gtube. Then I talked to the wife of a guy who had the nissan as an adult. He said it turned off the reflux like a lightswitch. The morning of his surgery was THE LAST time he had reflux. Ever.
The gtube was harder to take care of for the first 6 weeks, but now it's easy. Also, if she starts eating normally, the g-tube is really easy to take out - heals up fast.
Summer's been off ativan/methadone for a few months after being on it for almost the whole first year of her life. Go slow...and watch out for teething--can cause similar symptoms but she only needed tylenol to help her deal with it :)
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Comment by The Lobos on September 13, 2009 at 1:23pm -
We haven't seen the weight loss but did have her puking a little more than normal once we took her off Domperidone. In general it seems that CHD (specifically HRHS/HLHS) babies tend to be slow weight gainers. We have been in discussions with the doctors as well re: the G Tube. The 8th of Aug was 3 months for Amayah and she is taking to the bottle but very very slowly! Infact she just started to take more than 15 ml of milk by mouth over the last 3 days which is surprising. It is hard to she these kids go through all of this, they are so so strong!
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