Tuesday, November 2, 2010

Tomorrow, Tomorrow, I love ya tomorrow, you're only a day away!

Now that I've got you singing, I think it is true; we may just be going home tomorrow. Can't believe it!!

We effectively cleaned the poor little guys GI tract out yesterday and today; and he is a pooping champion. This morning though, the vomiting started again. The vomiting seems to largely be triggered by secretions that Matthew has in the back of his throat. He sounds almost gurgley. It's hard to explain. It's like you want him to clear his throat. And these secretions for some reason go haywire when he has his feeds running. And NO ONE has ever seen anything like this. Not the hospitalist, not pulmonary, not GI, nor any nurse we've talked to. J tube feedings usually cure the vomiting problem. No one seems to understand.

Matthew's feedings are running at a rate that he gets 6 hours free of the pump each day. And today, when he got his break; his secretions essentially went away, and he was a happy little boy.

Pulmonology was asked to come in again today and see if they could figure out any magic to help with secretions. When the very nice doctor came in (I have to say, I haven't met a pulmonologist here that I don't absolutely love..and I've met three) he looked in the back of Matthew's throat and was surprised by what he saw. The secretions were so thick, he said, that they almost looked like they contained pus. EWWWWWW. He said he probably has bacterial bronchitis, and it is possible to have this without a fever. He put Matthew on a regimien of strong antibiotics, and we are hoping this will help with the gross stuff that is gagging him. No one understands why the secretions become so bad with the running of his feedings; but we are willing to try this.

GI came through, and they have no answers for us. He was much kinder today; and he basically just told me that there is no surgery that will cure the retching; as this is not a reflux issue. He is not at all recommending a fundoplication (as the on-call doctor was) because the retching will most likely break down the fundo; and it would only fix reflux, and not retching. He states for a child like Matthew it would be very risky to do the surgery, and he does not see any benefit at this time. If Matthew would start getting a lot of aspiration pneumonia's then he would reconsider. He did, however, give me full liberty once we get home, to put Matthew back on a homemade blended diet. He even brought it up. He thinks it would be easier on his gut than formula; and help him thrive. He also thinks we should try to use prune juice instead of Mirilax. I would like to try this, too. He is very laid back in his approaches; but also was very frank with me, saying that there was not any way to stop the retching.

So, barring anything crazy happening; we should be on our way tomorrow. We have not fixed everything, but we have a plan. And I have a few back up plans should our plan not work. We have enough medical equipment at home to provide him what he needs. I may not get much else done some days, except taking care of Matthew's medical needs; but we are fortunate to have a great nurse that will now be coming to the house a couple days a week on a regular basis to give me a break. Depending on how our nights go; we may get a couple nights this week of coverage also; so we can all get some good sleep.

Here's hoping that the next blog comes to you from my living room!


Diane said...

I'm singing with you :)

Hope today is the big day and you won't have to go back there in a long time. Also, Tyler hated prune juice and we just switched to Plum Smart Digestive Health. It is plum juice and grape juice mixed and it tastes so much better and Tyler loves it. Prune juice may work better but it's hard to force your kid to drink it if they don't like it.

Shannon said...

Praying for you all. What a difficult road this has been.

Carla said...

Sounds like great news! Praying y'all get to come home. A blended food diet sounds awesome. I believe there is even a yahoo email group for it if your interested. I just heard of it via the cp moms group.

Michelle said...

I do hope that you got to head home today - though I wish it were with some more definitive answers. There must be something about the feeds that is putting pressure on a button somewhere labeled "generate mucous now". Hopefully the antibiotics will help and you'll all be able to STAY OUT OF THE HOSPITAL for a while!