Friday, October 31, 2008

Déjà Vu ?? Oh yea I remember this!

Elias has not been doing so well the last two nights. He has been vomiting, and the G-tube leakage is back to the good old days of the NICU. We knew this was going to happen, we told them this was going to happen, and now they are scratching their heads? Well, we can go back to August 2, 2008 and tell you this is a repeat episode. Elias was spitting up and the balloon had 3 mls in it, just like it does now. In case I forgot to mention it, while Elias was in the hospital they decided the balloon needed more than 2 mls inside and increased it to 3, disregarding our objections. We told them it would leak and it is not disappointing. Yesterday he lost 44 ml of measurable leakage ( remember this doesn't include the soaked clothes) and today as of 2 pm 29 mls of leakage. This is even worse than the 24 mls were averaging in the NICU. We have been on the phone with the ped surgery nurse practitioners several times since discharge Tuesday. They are mainly watching his output ( diaper and ostomy) and I suppose if that gets bad then they will do something. If we have to take him back to the hospital again, I think we have decided to demand they close this stoma and redo the surgery. Just like the last time in August, Elias was spitting up until they deflated the balloon. The downside to doing this again, is it was falling out all the time. That leaves us with one choice, if they will not redo it, then we may have no other choice but to take him some place else. We are tired of dealing with it. It is stressful enough at home and we have enough doctor appointments, we do not need another reason to go to the hospital.

Also an update on the nursing situation, well they are still looking and have not found anyone yet, but are sub-contracting to another agency now. They still have to follow our agency's protocols however. So they are patch working a schedule together for us in the interim. We also got rejected by the state for a few more hours of care...we will fill you in on that later today or tomorrow. I have been working on that update for two days, typing a little at a time in between the busy schedule. At least the nurses we have had the last few nights have worked out well, so that is a positive. Hopefully, we will have this resolved soon. I would say all in all things are OK, a touch frustrating, but what's new. I think we can cure 80% of our problems if the darn G-tube would magically go away!!


  1. oh wow, I can't even imagine how difficult it must be. Thanks for visiting my blog, I hope you have better days with your sweet son.

    Blessings, Sarah

  2. I'm so happy to go to meet Elias and learn about your family. Here's hoping next Halloween things will be much, much better. I know they will ...

    Praying for all of you!

  3. I would say that his g tube needs 5 mls in it. Thats what our sons has and there is no leaking. Have they tought you how to do all of that your self yet? I would be so happy to help you in anyway if i can. our son was born with esophageal atresia down syndrome tracheomalacia bronchomalacia and laryngomalacia and is fed thu his g tube and has never eat from his mouth really at all. I feel your pain. i will be praying for you and i hope all is getting better.

  4. You and your Husband are very brave and so is little Elias! Hope I got that right! Thanks for visiting my blog and I added myself as a follower! Linda


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