Cohen made a smooth adjustment off the ventilator and was enjoying having full access to his hands again. Usually sleeping with his hands straight in the air, like he was riding a roller coaster, is the way he enjoyed sleeping. But being on the ventilator, the adults had strict policies about keeping their hands off the tube. This was understandable because Sir Cohen tended to not be trusted with his hands (ng tube pulling). So at last he could sleep with his hands free from any blankets and was comfy.
He was also enjoying his sleep because he was still on some sedation medications. When on the ventilator, he needed some form of sedation to keep him calm. Because these sedation medications were fairly strong, he would need to be weaned from them. As a mother, I never thought I would have to witness my child going through withdrawals from drugs, let alone at such a young age. Having spent the past week on a ventilator, he had also been on those medications for the same amount of time keeping him calm and distracted from the tube in his mouth. Treating his like a heroin addict, he began to receive small doses of Ativan and another medication. Also to bridge him between doses of these meds, he was occasionally given morphine. Watching Cohen tremble in his sleep in between doses, sweat, and be very irritable was heartbreaking to see. I was watching my 3 month old son go through something he shouldn't have to go through. He was experiencing something that people do to kick something they have had a habit for for a long time. He needed to be on the ventilator to keep him stable and this was the risk. Everything in medicine has risks and benefits and this was one of those things where the benefits of having the breathing tube put in at the time outweighed the risks.
Over the next few days he has improved and is still on low doses of these medications but is getting better each day. His cry is not as loud as before because he is still rather swollen...but honestly I don't mind the quiet cry! He can keep it if he wishes.
Ever since we had started feeding him strictly through his jtube to his small intestines, many things had improved for him. He was no longer coughing and gagging up phlegm, and he was breathing more easy. Maybe after all the kid had some reflux going on after all. Dr. Harris, the current attending, was making it her mission to treat him like a chronic reflux baby in hopes of improving the swollen airway. His airway was swollen due to the tube being in but also possibly due to repeated aspiration. Over the weekend he still sounded terrible when he cried, but was no longer showing any signs of reflux. All of the nurses were on strict orders to deliver all medications as well through the jtube or via IV.
Yesterday on rounds Dr. Harris proclaimed her views to the 7 residents taking notes in my room, that she truly did not believe this was a case of interstitial lung disease but could quite possibly be chronic aspiration. They suggested trying Heliox as a method for further determining whether or not he did have an invisible obstruction. Heliox is a mixture of helium and oxygen. Because helium is a lighter gas it can travel with less resistance down the airway and into small openings of the lungs than oxygen can do. Their reasoning behind this was not to start us on another new therapy to take home, but to validate whether or not this airway obstruction did exist. Now we sounded like we were treating an alien with some crazy rare illness. Where did they come up with this stuff? If not for Cohen, I would've lived my entire life and never have experienced Heliox.
Heliox is no joke. They showed up with these two huge tanks filled with the Heliox solution. After being hooked up for only 10 minutes, Dr. Harris called me at home. After getting over the initial shock of seeing the scary hospital numbers come up on my caller id of my phone, I listened to her words as she uttered, "he sounds the best he has ever sounded. He is breathing calmly and quietly." Like a normal baby, I witnesses what most parents get to witness when they take home their baby, a peaceful, quiet breather. As I held him in my arms, I couldn't get over the fact that he was silent. I was so used to hearing his striderous sound it was amazing to hear him so calm. Dr. Harris suggested we talk to discuss plans for Cohen. At this point, they do not have helium therapy that is available in the house. I was very happy about this because after seeing this set-up you an only imagine how much more challenging it would be to add this to the decor of my living room.
Her plan was an A or B plan. Plan A we give him steroids to help with the swelling of his airway and send him home again hoping he grows and his airway expands. Plan B would be to hold tight for another few weeks to a month to help him grow on the Heliox and hoping that his airway expands. I disliked both plans for valid reasons, but ultimately the goal would be to get home and STAY home so I chose Plan B.
We will see what tomorrow brings...as for now we rest :)