Appt update...take 2!

So we had an appt with the dietitian today.  I knew that she was going to be worried with his weight loss and so I prepared myself for that.  I didnt prepare myself for everything else that took place today.  

When we saw Dr T on Monday, he had mentioned it was probably time for a port (  A port  is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick"). for IV fluids.  He told me that I should talk to GI about it when I saw her on the 18th.  I said ok and marked it down in my book to remember.  Well when we were at the dietitian she also brought it up.  She asked if we had looked in to getting IV fluids done at home.  I said yes, and that we had just talked about it.  She said that she thinks it would be good to start Jacob on TPN (Total Parenteral Nutrition.   It provides your body with nutrition such as protein, sugar, vitamins, minerals, and sometimes fat (lipids). TPN is used when you are unable to eat or cannot get enough nutrition from the foods you eat. )  Because he is not being able to tolerate his formula and he is just loosing weight.  So she wants him to be on it until we can gain some weight.  But she said that she isnt a doctor and would have to check with his GI doc first before we did anything further.  So she went out to go find her and came back a few min later and said that she wanted to see us ASAP so she wanted us to come back a few hours later when she had an opening.  So off we went back home for an hour and a half.  When we arrived back at the GI office, she came in and sat down and had us tell her about what was going on and what the dietitian said.  I gave her a 30 second update and she said...oh I have to talk to Dr T about all of this.and then gets up.  I was a little confused so I asked her what?  She said that she had called him and he just called her back.  She wanted to talk to him to come up with a good plan moving forward and wanted to see what would work best for Jacob.  I was so shocked.  I have never had a doctor that was willing to talk to other doctors to find a good plan for Jacob.  So I was excited to see what they came up with.  But I was not expecting everything haha.

She came back about 15 min later and said that they are going to go ahead with the port.  And that as soon as we were done with her, we needed to go downstairs to surgery and ask them to get us seen ASAP.  She wanted us seen TODAY.  However, after we went down there, I was informed that there were no doctors at the clinic until Monday.  They were all on call at different hospitals.  So we have an appt for Monday at 11 to talk about the port placement.  And then she said that she wanted to take out jakes G tube and put in a GJ tube (A gastrojejunostomy or GJ feeding tube is a combination device that includes access to both the stomach and the jejunum, or middle part of the small intestine. Typical tubes are placed in a G-tube site or stoma, with a narrower long tube continuing through the stomach and into the small intestine. The GJ-tube is used widely in individuals with severe gastric motility, high risk of aspiration, or an inability to feed into the stomach. It allows the stomach to be continually vented or drained while simultaneously feeding into the small intestine) That way it will bypass the stomach and go right into the intestines.  It should make it that he does not have reflux or throw up anymore and hopefully not have anymore pain.  Which is a good thing.  I asked her if it would solve the problem he has about him not having an appetite and getting super full.  She said no...that those feelings are more of a nerve problem with the neuropathy.  She said that some kids she has with this problem have no problems tolerating feeds.  Then she has kids who have issues and have to be on TPN long term because they cant take in feeds.  

I wont lie, I am pretty scared.  I have really wanted to avoid the port as long as possible because I know there is a chance of getting bad infections.  And that can lead to a bunch of different problems.  I know staying on TPN is not good either.  It can harm some of his other organs.  I know that none of this is necessarily great...but this is our only option right now.  We have tried everything and it seems like nothing will work.  Now that we know we are dealing with neuropathy we will try to figure out how best to manage it and the best way go around it.  Seeing Jacobs health get worse is just so scary to us.  We hate seeing him in pain all the time and feeling so sick.  I really hope this does more good than bad.  I am just so worried that it may harm more than it will do good for him.  But I have faith.  I know that the doctors would not do this if they didnt think it would help.  Its just scary sometimes.