Wednesday, November 17, 2010

Well, that was fun (NOT).

Tomas had his swallow study and it was a disaster, but not for the reasons I thought it would be. The last time I fed him on anything of a regular schedule was about 6 weeks ago. He ended up with bronchitis again so the last pulm doctor put him on hold until after the next swallow study. I gave him a good long break before I even tried to just give him a spoonful here and there. About 3 weeks ago I tried to give him some baby fruit, and he turned his face away. A few days later and he turned his face a way, but with moderate amounts of effort on my part he did take 3 or so spoonfuls before I stopped so as not to make him sick again. I remember thinking while this was all going on that it has finally happened. He is getting orally averse. After almost two years of no real mouth eating he is done with it, plus I think he's finally figured out it hurts and he doesn't like it.
Flash forward to this morning and he wanted nothing to do with the bottle, or the spoon. I tried a few times but there was no coaxing him at all. Finally, the feeding therapist forced a syringe into his mouth  to make him swallow, he spit it back out. The test was called off and I got to clean off my barium covered baby.
The report (the therapist told me) is going to say he is orally averse and needs intensive feeding therapy, just so he can come back and have another test to see if he is actually allowed to eat. Wrap your head around that one.
Now comes decision time, I talked to Mike and the first thing he said was we needed to get him therapy right away otherwise he won't eat. I am so torn over this. I can see both sides, the first being that we need to teach him how to eat and to learn that eating is not going to hurt him (providing of course that he is NOT aspirating - which we can't tell until he eats - bizzarro). That means intensive therapy and fair amounts of torture as he clearly does not want food in his mouth.  With a fair amount of work we could get him to the point where he can be tested and then see if it is ok to continue feeding him or not.
The other side is why bother right now? He is still going to need the tube until we figure out the metabolic issues, so why try to get him eating. Why not just wait until he is 3 or 4 and we can use (a small) amount of reason to lessen the severity of trauma involved in learning to eat.
Ugh... I just don't know, it can so go either way. On one hand, he could get a metabolic diagnosis in, let's say, a month, and without feeding him for that month I would lose what (very) tiny hope I have right now of getting him to take a spoon. On the other hand he has only been sick once since we moved back to continuous j feeds (in August). I can't discount that.
Out of curiosity I tried tonight to feed him. After much happy talking and cheering I did get him to let the spoon in twice. He spit all the food out but he did open his mouth for the spoon. So maybe that is the happy medium God is trying to show me. Keep him allowing the food in there, but don't force him to swallow it. Not yet anyway.


  1. I understand that you don't want to traumatize him, but also doing nothing will just make it harder to break as he gets older. Its funny, me and Heather were just talking about this! She is having a horrible time getting Zoey to do anything by mouth, because she didn't do anything for so long and while going through chemo.
    You can do oral stimulation with him without actually using food, that may be the best thing for now until he understands that its ok!

  2. Feeding,the bane of my existence!Okay,that is a little over dramatic but I feel your frustration and certainly understand your confusion on which route to go.

    Denise,Lacey and I were all talking about this issue today and yesterday and the day before!!Seems Miss Ella is being a stinker as well.I suppose my advice is the same as Lacey's.Oral stimulation and maybe just tastes of food and textures.There are some great simulation tools out there.Talk Tools website is fantastic.

    I take so much responsibility for where we are at.Once chemo began I felt I didn't want to over stress her once she showed a lack of interest but I really should have kept it up.Boy am I paying for it.

    Maybe if she never ate or nursed I wouldn't be as frustrated but because she did and now doesn't,that makes it all the more so.

    I have to believe,it will all,for all of our kids be in good time.Their time.His time.For now,in a weird way,the g-tube is one easy aspect of her little complicated life.Sometimes I think she deserves easy.But still I try and hope and pray.I'll do the same for sweet Tomas.

  3. No advice here. Just sorry you have to go through this.

  4. Oh my are describing Ella and eating to a tea. What matching little stinkers they are. So of course I have no advice on how to get him to eat...heck, I can't even get my own child to. I know their reasons are all very different but the outcome is the same :( And very I am afraid, Miss Ella will have a matching G-tube!!

  5. Well the pros(Lacy, Heather and Denise) all left you the best advice. Good luck and I'll be praying. God will make it clear, which way to go!