Tuesday, January 14, 2014

"Getting-to-Know" Cohen

As we start the third week of Cohen's second hospitalization, it is crazy to think that this little guy has spent the majority of his life in a hospital.  He has only seen the outside world for 9 days which is mind-blowing to Ryan and I because it seems like time has just stopped!  Part of it feels like it was yesterday that he was born, but then we also have become so accustomed to this way of life that we are used to the daily routine of going to/from the hospital.

After the recommendations were to put him back onto oxygen while he slept, there have been for the most part HUGE improvements!  He has not had any desaturations since then, so the plan definitely worked!  He is on the smallest amount of oxygen you can be on, almost just a flow to keep his airway open while he sleeps.

Two nights ago we were getting ready to go home and the plan was that on Monday we could take the little mister home once again!  He passed his carseat challenge with flying colors!  But later that night, as I was trying to sleep, his monitors continued to go off primarily due to his increased respiratory rate. He usually averages in the 30-50's while he is asleep and was breathing continuously in the 70-90's.  This did not seem right.  I called Ryan on the phone to tell him to plan for him to not come home so he wouldn't be disappointed.  My gut was telling me that because this was not his norm and hadn't been for a few days now on and off.   The morning came and the same issues were happening.  During rounds, they clearly were not comfortable with letting him go home. There was a new doctor on starting this week.  He introduced himself and said, "It's ok. I'll need some time to get to know him!"  That's when I lost it!  We were tired of "getting-to-know" doctors and almost wasting time here. Of course there was a reason for our second stay and we have found out very valuable information about our baby, but at the same time days drag by here and things take time.  I didn't want to be set-up for another week-2 week stay because a doctor needed to "get-to-know" him.  I began crying in front of the 5 doctors, residents, and support team in disbelief because part of me felt like we were never going to get out of here if we kept up this routine and cycle of doctors. It had happened before and due to his special needs, being so sensitive to positioning for breathing and food increase, it seemed like every doctor that has come into his life doesn't truly understand Cohen until they spend at least a few days getting to know him.  He reassured us that he would return in a bit to discuss this more in depth.

Meanwhile during all of this the contracted provider was in our room trying to show us how to use his new oxygen monitor and oxygen tank.  I was overwhelmed with emotions. Again we had this representative in our room training us on one more thing that we would need to help our baby.  How could this be happening?  She was talking and I was "listening" but nothing was penetrating my exhausted brain.  She mentioned that she had gone through similar circumstances with her child and now he was a healthy 20-year-old but her words were not comforting at all. I signed all of the paperwork and she left the room quietly.

A few hours later the doctor returned and re-read all of his files on the computer in his room.  He must have spent a good 20-30 minutes doing that and continually asking me questions. He was amazed by the amount of specialists we had seen, tests/procedures we had been through and that we were still here!  He spoke to us for another 30 minutes about his philosophy on Cohen and how this could go.  He told us that all babies do better when they have more weight on them and that many of these problems (breathing and reflux) could be improved with weight gain and time!  On the other hand, if he has gained weight or not gained weight over time and he is still having numerous issues and being very sensitive to food and positioning for breathing we would need to explore options that may be a bit more invasive. I'm not even going to list these things because they won't be happening!  I'm positive and Ryan agrees that once we get this little dude home in a nurturing environment that the haunting sounds of monitors and nurses doing their vitals will be all in the past!  He also mentioned that although Cohen has his ups and downs he technically could go home, it's just going to be a day-by-day scenario.  He reminded us that he has spent the majority of his life in a hospital bed, and although they can make sure he gains weight in the hospital, the benefits of being at home are so much more!

The other main thing we discussed was that we need a "POINT PERSON" to address Cohen's day-to-day needs.  He will eventually need to change his feeds to increase his calories and that could be a battle.  There will be days when he will be breathing faster and more labored than others. We needed someone that we can turn to that would know Cohen, what he's been through, and who would know his baseline when it comes to these things.  We completely agreed!  There has still never been that person or small group of people that we could turn to through all of this even when we were home during our short stay.  Luckily the group of pediatricians that are Cohen and Isla's doctors due see some patients in the hospital under another service.  He was unable to see them through all of this due to hospital bureaucracy and protocol.  But by transferring him to their service and if they could "get-to-know" him over just a few days and as long as he behaved himself we would be better prepared to go home.  It sounded crazy signing up for another few days in the hospital, but by doing this we may save ourselves a few hospital visits in the long run.  Now we would have a group of people who already were his pediatricians and would also be there for those 2a.m. phone calls that would come.  We would be able to trust that they knew Cohen and could give us the proper advice when we needed it! I was very content with our plan and truly appreciated this doctor making these arrangements. He seemed like the first one we have seen here that truly cared about getting us home and also took the time to "get-to-know" Cohen even if it were for 1 day!

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