Wednesday, August 25, 2010

Luke's g-tube and feeding history Part 1

At birth Luke didn't seem to be sucking, or swallowing, and so they put a tube down his throat to get some good nutritious breastmilk down to his tummy.  He did great on breastmilk but his breathing did not improve and becuase of the trach (and ventilator) and aspiration risk and with Moebius children having trouble swallowing and eating they put in a g-tube when Luke was about a month old.   His first g-tube was a Bard button.  The Bard button has a low profile, it is a lot thinner than the Mic-Key buttons) and we liked it.  The downside is that if something breaks on it you have to go back to the surgeon to get it fixed.  They told us this button could last from 1-3 years and we thought that Luke would possibly not need a g-tube by then.  It's a 3.5-4 hour drive down to our surgeon so we weren't really wanting this button to break.  A few weeks later he wasn't gaining as much weight as he should and so they brought a dietitian/nutritionist in to see what he needed.  Since I he was eating breastmilk they assumed that he wasn't getting enough calories and so said they wanted to add some formula to the breastmilk.  I was devastated and mad.  But I didn't know as much as I do not, or even a couple weeks later, and so I said okay since I wanted my son healthy.

So begins my battle with nutritionists.  Well this nutritionist came back 3-4 days after we started adding the formula to his milk.  During these 3-4 days I carefully watched his weights that were taken ever night.  They wanted him to gain 25-35 g every day.  Well he had been gaining 30-40 g those 3-4 days.  However the nutritionist said that he still wasn't gaining enough weight and she wanted to increase the formula to a higher calorie one.  I was freaking out and asked how she came up with that since every day he had been gaining enough weight.  She said that she hadn't taken the last two days weights into consideration but she had averaged the weights of the past 10 days which is what she does to evaluate weight gain and he still wasn't gaining enough.  Okay does anyone else see a problem with this.  She is using the past 10 days weights to determine if the formula Luke had been getting for 3-4 days was working of which she only had a few days of data.  So I pointed out to her that she can't use the past 10 days since he hasn't been getting formula for all those 10 days.  She has a before average weight gain and she has to take just the weights since the addition of formula including the ones she hadn't figured in yet to see if he was increasing.  I told her he was doing great with weight gain now and the numbers should show that.  She took her stuff and said she would be right back.  When she came back she had her statistics figured correctly and didn't think Luke needed the higher calorie formula.

About a week or so, I don't quite remember, Luke's vent settings were changed around to help him with his breathing more and then he started gaining weight too fast.  So after 14-16 days of formula addition it was removed.  However, it was only removed becuase I noticed the large weight gains and requested the nutritionist come back becuase I wanted to remove the formula.  I am not sure when she would have come back and even if she did if the formula would have been removed.

So back on track with just breastmilk we left the hospital when Luke was 3 1/2 months old.  Which since then I have realized is a minor miracle for a vent baby.  Before he left Luke had been getting some granulation tissue around his stoma site.  We were told that it is normal for the stoma to develop granulation tissue, which I think is when tissue is trying to grow to close the open hold and exposed skin in the hole created by the button.  We tried putting a split sponge under the button and having nothing under it.  On the day we left they decided to put silver nitrate on it, they just took at stick with silver nitrate on the end and touched it to the granulation tissue.  The tissue turned gray/black and then fell off and after a day or two his stoma site looked great.  We were glad it was taken care of with a pain free easy method.

Luke left the hospital with plaster casts on and his last weight without casts was a day before he left.  They also took a weight, with the casts on, the day he left.  We had to change the casts every week so we took our scale and weighed Luke while his casts were off every week.  I called in a number of the the cast weights to pulmonlogy.

When we got to our first pulmonoloy appointment Luke had just gotten a new set of casts on but they weighted him anyway becuase it is their procedure.  I did give them the no cast weight of that day and some others they did not have.  When the nutritionist came in we asked if we can eliminate one of Luke's night feedings.   We were also looking for a possible food increase since it had been over a month since he had an increase.  When the nutritionist came in she said she didn't want to increase Luke's food becuase he was gaining 50 g per day.  I was surprised but we moved on and she went out to figure out the numbers of how to eliminate one of the night feedings.  While she was out I figured did the math and he had only been gaining 25g since he left the hospital not 50 g.  Something was wrong here.  So when the nutritionist came back I asked her how she figured 50 g and she was figuring it based on cast weights.  I informed her that his casts in the hospital were very different from the ones he got out of the hospital as they had more time to work on them and that each week the casts were different and that is why I had been giving her no cast weights.  Also she was using the weight they got at the office just then which was a cast weight when the casts were fresh and wet so they weighted quite a bit more than a dry cast.  She seemed to not really care that she was using cast weights and didn't really think it was that bad of a thing to be doing.  Ahhhhh!  She did say that she wouldn't change what she was doing since 25g was still within what they wanted.  She told me that if I wanted a food increase before we came back in 6 weeks that I would have to call the office.  I told her I would be calling, and I did a couple of weeks later. 

From here things went along pretty well for the next couple of months with feeding (increasing the amount of food every so often) and the stoma site had a little granulation here or there but nothing that stayed to long.   Our next big hurdle was going to be in September when the valve on the button broke.

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