Wednesday, January 29, 2014

More Meds...Guinea Pig!

Later on that evening Ryan went back into the hospital for his evening shift.  He had told his nurse about how when we took Cohen home he seemed very fussy and uncomfortable to due possible gas.  With g-tubes it is often that children can become gassy and the only way for them to relieve that gas is to "burp" them.  She suggested we do this with using a Farrel Bag.  Using gravity it looks like an IV bag that is hooked up to Cohen's gtube site and then when he needs to release gas it naturally pushes some of the formula back out causing him to burp.  He had a relatively mellow evening.

The following morning we met with the Pulminology team to get their insight into why we were back here again and why his breathing continues to be an issue.  They feel that even though we had the bronchoscopy earlier on (Dec) it seemed to show that his airway was clear; however, he could have possibly developed some bronchial malacia over time or there could've still been something that they had missed.  Since they said ENT didn't use a flexible scope, there could be a chance that the airway was just propped open, not allowing any anatomy concerns to be as visible.  They also thought that he could have this "floppy airway" farther down that where ENT had traveled.  Before putting him through another procedure and another incident of having to go under anesthesia, they decided that they would try two different types of medication they would give to asthmatic patients to see if that would stabilize his breathing more.

Later that day he received his first dose of albuterol.  In general, Ryan said he was a very ALERT baby, possibly due to the albuterol.  He was the most interactive Ryan had seen and was Mr. Smiles! We were pleasantly relieved and excited about this new plan from pulminology. If this was the reason as to why we were back in for another stay, we were happy to have more answers!!  The doctors seemed confident and we were all on the same page.  If this plan worked, then Cohen would be coming home with another med, but it would only need to be taken when his breathing was getting out of control and then we would not be having to come back to the hospital each time this happened.

Meanwhile the cardiologist has always adamantly stood by the fact that he does not need any heart medication (lasix) to help remove fluid.  He doesn't think his breathing is being affected by the small size of his VSD.  With this being said, he was pressured into trying out a trial run of lasix to rule it out, just because we are at the point now where having only spent 18 days at home is kind of ridiculous!!  We would also experiment with this to see if it had any improvement on his breathing.

So we gave it a try....and not surprisingly, they did not work! The poor little guy was WIDE AWAKE all last night to the point where he only slept for 2 hours due to the albuterol.  I understand that we are trying to figure out the cause to this breathing and how to best treat it but sometimes I wonder if our baby boy is the guinea pig to some doctor's ideas.

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