Joshua has been tiring out and puking after every feeding. He's been consistent in the fact that he drinks about a half a bottle and then falls asleep. His little body just can't handle more than that. Then the puking starts.
He's on a continuous feed that pumps milk into his tummy for 3 hours at a time. Then it's turned off for an hour, and then he PO feeds (feeds by mouth.) Then the pump is turned back on for 3 hours and the cycle continues. He PO feeds every 4 hours. I'm tired of it.
I want them to get him off of the continuous feed and get him strictly on PO feeds or tube feeds. (If he doesn't take his full 55ml's of milk then we tube feed him the rest.) There really is no reason that he can't be on stricly PO feeds.
So I told my nurse today (in the nicest and most direct way possible) that I just want us to go home. I want to get the G-tube, learn how to feed and give him his meds, and GO HOME! She completely agreed with me. She also agrees that there is no reason for the continuous feeds. She went immediately to talk to the doctor. He is coming in very shortly to talk about a new plan of care.
I'm no longer going to sit here and wait. We need to get more agressive with this feeding stuff or we will be here another 2 months. I'm NOT going to be here that long!
I feel like we have been doing this for long enough that we know what Joshua can and cannot handle. We have a decent enough routine established, and we know what issues we are dealing with.
We have 6 more days of methedone weaning. The surgery schedule for a G-tube and circumcision is about 6 or 7 days out from now. After the G-tube is place, it will be another 7 days or so before we can go home. That already puts us at 2 weeks out. Let's get this ball rolling. Get us on that surgery schedule and one step closer to getting home.
Mama Bear has arrived and we are getting out of here. (Is that fierce and fiesty enough for ya?!)
5 comments:
Jill, you will love the G-tube. You really will. I can not say enough good things about it! I know how frustrating it is that "feeding issues" are the only thing keeping you in the hospital. We have so been there. Please keep in mind that they bolus tube feed for a reason. When Joshua is eating PO, do they make you time it? We had 30 minutes to get that little bottle (the skinny tube one) down or else we had to tube feed the rest. Then we tube fed the next dose, then back to PO. When those little cardiac kids expend more to eat then they take in, it can be a problem. Keep the faith that you WILL get home soon. But please don't rush it, because you can end up right back there within hours/days of coming home....and we don't want to read about that!
Shannon Egan
Ahh the g-tube! How do we love thee? You are ahead of the game by accepting this part of the journey so quickly. Right now it's all about survival and the g-tube is a life saver. Do what ever it takes and make no excuses :) Praying in IL., Crystal
They have been making him PO feed every 4 hours. But the problem is, is that he only goes for about 10 minutes then tires out. So we are having to tube feed the rest of it to him. I'm tired of fighting it. It's just time to get the g-tube scheduled.
I responded to your g-tube post on facebook but I just wanted to say that you won't regret your decision about the g-tube. It is a wonderful thing regardless of what some non-g-tube mommas might say. Trust me there are some that are against it. However from my own experience it is a necessity and it sure does come in handy went they are sick. I kept Logan out of the hospital numerous times because I was able to keep him hydrated with pedialyte through the g-tube. It's a life saver. Plus, it just makes the whole feeding thing so much easier.
My one piece of advice is to run the feeds however works best for you. Everyone kept trying to tell us we had to do bolus feeds with his tube over a half hour period and Logan would vomit every time....HUGE amounts. Finally our awesome peds GI nurse told us to run the feeds for how ever long it took....an hour and half if needed....whatever it takes to get him to keep it all down. That was more important to them than how fast we could do a g-tube feed. My moto....slow and steady wins the race.
If you should have any questions don't be afraid to e-mail me about the tube. We had ours for eighteen months.
Jill - going for about 10 minutes and then tiring out is SOOOOOOOOOO very common in our kids. Remember, it takes extra energy for them to just live. I agree with Stefenie about the rate of feeds. It is pretty much trial and error. You will find the "right time" for Joshua. If it takes him 2 hours for a feed - so be it. We were on the 1 1/2 hour plan. Then graduated to the shortest time of 45 minutes. I can not stress enough how much you will come to love the tube. Not only will it help to sustain Joshua but it comes in VERY handy for meds and pedialyte (as Stefenie said) If I had only embraced that darn tube we would have been out of the hospital a week earlier - I fought it and hard for 7 days before I just had to give up, get up off my knees (I was praying for a miracle in the feeding department) and went to find our GI dr. In the middle of the CVICU pod I broke down in hysterical tears/laughter/sobs and said "you win" In the end it was not a matter of me vs the dr it was how could I keep my daughter alive.
Good Luck - you are ahead of the feeding curve if you are embracing the G-tube.
Shannon Egan
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