Friday, March 14, 2014

I'm Back!

Over these past 12 weeks that Cohen has been fighting for his life in and out of the hospital, we have been amazed by his strength, resiliency, and especially his attitude.  He is one happy baby!!  Even with having a tube in his mouth and being on crazy amounts of drugs, this little boy is one tough cookie!

To back up a few days ago, Cohen was making great strides on his very cool Heliox set-up in the hospital.  His cardiologist came by to see him and could not believe how amazing he sounded.  This proved to the doctors that he definitely had an unidentifiable obstruction.  Because the heliox was able to travel into small passageways, his breathing was slower and much quieter!  After a few days on his trusty sidekick tanks, the doctors had proved their point and felt comfortable taking him off of the Heliox.  They wanted him to return to his original home set-up but the plan was to get him down to less flow if tolerated.

Today Cohen is breathing easy on only 2 liters of regular flow, not even high flow!  He is doing so well and the doctors are so impressed with how he has improved.  If we could get him home on regular oxygen and not even high flow it would be a world of difference to his quality of life and our sanity.  We could venture outdoors more with a travel oxygen tank and not be restricted to the amount of hours he would have to be detached from his high flow system.

Dr. Harris, the amazing and caring doctor we have had all week is convinced it is reflux that has exacerbated all of his issues and she may even have me convinced at this point as well.  Talking on rounds today, we discussed how the pulmonary team is so impressed with the difference this week has made and how they were also now believers that this may not be a rare lung disease. As frustrating as it is to watch these doctors teeter totter their motives, theories, and beliefs I feel happy and confident if they are happy and confident.  Having so many specialists involved often is a negative thing because fingers are pointed and someone wants to finally be able to claim they have found the source of Cohen's struggles; however, often times theories and ideas only confuse the situation more and often scare the hell out of us!

Dr. Harris, Ryan and I have chosen Plan B for him at this point.  We want him to be the most stable and in the best place possible before taking him home for the fourth time.  We want it to be successful and memorable for positive reasons, not scary memories.  We want him to gain weight, breathe easier, and hopefully one day outgrow all the wires, cords, and monitors that are attached to him.  Our three month old has grown accustomed to being weighted down by his hospital shackles as have we with holding him and trying to ignore them.  For the meantime he will continue to be hooked up to these shackles as he grows and gains weight..hopefully quickly...but at least he will do it all while smiling :)

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