Wednesday, January 7, 2009

Changes - Bringing Everyone Up to Speed

Things here have certainly been moving. There has been so many things going on that time has been a premium. Sorry we have not been able to update, but along with all the medical issues Elias is having he has turned on the light switch and really started developing, which certainly require more one on one time and that is wonderful. His head control has been amazing and even some modified tummy time (on our laps) is displaying some impressive results. He is wanting to sit up more too and while his endurance is still not the best his desire to sit will only help improve that. We are excited for our NICU follow-up clinic appointment next week to hear how the developmental doctors feel about his impressive and sudden development of key skills.

We have been home from the hospital for 5 days and so far things are going much better. While they actually did not do much for him in the way of treatment, it was important during that time he be in the controlled environment with the ability to test and treat at a moments notice. It did show us a few things that might lead us to the ultimate answer and goal. We had a follow up visit with our pulmonologist who did not get to see Elias while he was in the hospital. Based on the report and what we were describing, along with his physical evaluation, she is in complete agreement that the emecis issues more than likely are caused by his secretions. We always notice a decrease in the emecis activity while on the steroids ( Which he is now on his fourth course in 7 weeks) and when those complete, we cycle backwards. He should not be on the steroids as often as he has been, so the question is what is causing this. There are a few thoughts that the GI doctor and pulmonologist have put out there. First of all reflux is causing the emecis regardless of the content, but the overwhelming amount of secretions may be amplifying the reflux making it appear worse. So they are maximizing the reflux medicine, which isn't that much more, but might provide some help. They are also increasing the Flovent dose to 4 puffs twice a day @ 220 mcg and also prescribing glycopyrrolate which will help to reduce the secretions, particularly his oral. The thought continues to be that Elias micro aspirates his secretions daily. Over time this will burn his lungs and increase his risk for pneumonia. They need to determine for certain if this is the case so they will go ahead and do a barium swallow test. This is earlier than they really wanted to evaluate this, but the need to see the results are necessary. We are also going to do a gastric emptying scan for liquids. This will show how the stomach absorbs and empties and could give an indication to how bad the reflux might be. They will be doing another stool culture checking white blood count and blood. Finally, they are going to change his feeding schedule again but also his formula. GI thinks one thing that could be happening is an allergic reaction to milk by products. These are found in most formulas and we are fortifying breast milk with neosure. However, eliminating the neosure is not the only answer. Breast Milk as well carries milk by products, so if an allergy exist it would not be known. They are putting him on Elecare 30 calorie formula. There is no milk by product in this formula. His feeding regiment is still being figured out, but it will be something like 16 hours continuous feeding overnight, followed with a 3 hour rest then fed during the day for 2 hours, then rest again for 3 hours and repeat. This will be interesting, but it will free up Elias from being attached to the Feeding pump as often. We will have 6 hours during the day he is disconnected for playtime. That alone will be nice. We are trying this for a few weeks to see if there is any improvement. The one warning we got with all of these things is that if he does improve because we are changing so much so aggressively we will not know exactly what helped him. The alternative of trying these things piece meal one at a time would take us through the year, and we do not have that kind of time. It is serious enough to need to get a handle on this and prevent more hospitalizations and future pneumonia. All of this is being done to try and avoid a Nissen Surgery, also know as fundoplication. We have had conservative conversations with his surgeon about this, if you recall. He is not really for doing one on Elias unless absolutely necessary. Essentially, the part of the stomach that is closest to the entry of the esophagus is gathered, wrapped, and sutured around the lower end of the esophagus. This does not guarantee success in reducing reflux but makes it more difficult. The pulmonologist, GI specialist and Elias surgeon are meeting today to discuss all these treatments and options together. The GI specialist has also recommended as an alternative to the Nissen putting in a G/J-tube. This is a g-tube that splits with another tube going to the jejunum (just past the stomach) so you can switch back and forth. We have had this suggestion before and have met resistance from his surgeon on this, with good reasoning. Since the situation is slightly different he may be open to that idea vs. a Nissen. So the next few weeks will be as busy as the past few, but hopefully we will have the issue completely resolved and Elias will feel much better by the end of this.

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