Friday, January 10, 2014

Mr. Mystery Man

Cohen has officially earned "Mystery Man" status!  Since my last post so much has happened.  He continues to amaze us by his strength, resiliency, and puzzling aspects of himself.

After talking with the pulminology experts and hearing their recommendations, the team decided we should do the sleep study since most of his desaturations of oxygen occur during sleep.  He was hooked up to a series of monitors and extra leads that were placed all over his small head with a cap on top.  They wanted to see if he was having episodes of apnea and also how much oxygen he was really losing while sleeping, since sometimes the monitors tended to be a bit off.  We also wanted to see if there was a correlation between reflux episodes and his desaturations or was this related to something going on with him internally while he sleeps.  The results would take a few days to get back.

Also on the same day he began taking a steroid inhaler treatment three times per day to help with possible inflammation of his lungs.The inhaler mask fit around his nose, mouth and rested over his eyes.  The respiratory tech forced this on his poor little face while he proceeded to turn red and was screaming, but then eventually took a few deep breaths.  I keep reminding myself that he will never remember these moments of torment as much as we do.  Each time he is administered another medicine, my stomach churns wondering if this medicine is even doing something to help him, or is this just another trial and error idea from the doctors.

He also had a repeated chest x-ray the previous day just to double check he had not aspirated.  The chest x-ray was taken from the side as well this time and it showed that his diaphragm seemed to be slightly elevated.  They wanted to talk more about this tomorrow.  I was thinking about this on and off and decided to do some research!  I pulled out my 22Q book and decided to research diaphragm.  In the index, diaphragmatic hernia came up and next to it is said (rare).  When I saw this, my mind instantly started racing and thinking...this could be it!

Upon turning to the page symptoms listed were as follows:
-rapid breathing/varied
-noisy breathing
-mom's tend to have polyhydramnios (had that)
-tucking in chest when breathing
-intestines are pushed into lungs (definitely didn't have this based on previous chest x-rays).

Everything seemed to match up and I knew this had to be the answer to the last month and a half of mystery.  I rushed into the hospital the next morning for rounds to approach the team of doctors with my hypothesis and sure enough they were already thinking the same thing. They noted how impressed they were with the research I had done and everyone agreed....this was it!

That evening Cohen had a rough night having anywhere between 15-20 desaturations.  It became a routine.  He would or would not cough (the reflux choking, hoarse cough), and then within a few seconds everything on his monitor would go haywire.  His heart rate would fluctuate and his oxygen would then plummet.  First the "warning" monitor we call it would start to ding and this would be followed by the "holy s#4%" monitor which usually proceeds to ding louder and louder until the nurse walks in to check the monitor and silence it.  This routine happened every 15 minutes between the hours of 9pm through 1am.  Each time, Cohen would bring his numbers back up on his own without any assistance or oxygen needed, but it was still frightening each time it happened.  It got to the point that the nurses didn't even want to come in and would let the monitor go off and off till I would have to come in.  I was exhausted and emotionally drained from all of this.  As I was sitting in the dark room crying my eyes out about how one more thing could go wrong, my baby boy was sleeping through all of this!  I got off of the pull-out couch in our room and went over to look at him after the nurse left the room during one of his episodes.  He was swaddled in the hospital blanket, eyes wide open and staring at the ceiling.  He was so peaceful, thinking his peaceful thoughts and not about the chaos that was going on around him and inside of him.  I broke down at the edge of his hospital bed wondering how I could manage doing this another minute but he reminded me that he was doing just that!  This little guy was and is fighting a battle inside of him every day and even though we may not yet have the answers to why he is presenting these issues he has, I know that I need to continue to stay strong for him.  In the end, we hope that we can put an answer to the symptoms he has but for now he is still the Mystery Man.

This morning I was awaiting the results of the diaphragm ultrasound as well as the sleep study results.  The resident came in and told me the was not great.  The ultrasound showed that it was normal, he did not have a diaphragmatic hernia.  My day was shattered and I had to try to hold it together since I had felt so relieved from finding this information.  How could this be?  We still did not have an answer for the rapid breathing, the inconsistent breathing, the noisy breathing!  Then came the news about the sleep study.  It seemed that Cohen had Obstructive Apnea.  During his sleep study they found that he was having moments where he would stop breathing but also moments of desaturation of oxygen.  These moments did not last long and were very short, but what was worrisome was he was having many of them!  They were meeting with the sleep doctors later today to discuss plans moving forward but they had two ideas currently as to how to approach this new knowledge.
1. We would need to have Cohen on a small amount of oxygen to assist him while he sleeps (which for a newborn is pretty much all day).
2. There was talk of possible plastic surgery!  Yes, "they are crazy if they think he will get plastic surgery" is exactly what I said.  Apparently due to his small facial features and slightly inverted chin that may be causing his body to cause the obstruction, pushing his tongue backward while sleeping.

Luckily no decisions had to be made right away and we would most likely start with the oxygen. Their goal is to get us home as soon as possible and that is ours as well.  For now the Mystery Man is still waiting his diagnosis.

1 comment:

  1. Lindsey, I just wanted to say what a great advocate I think you are being for your baby boy. I happened across your blog because of a posting I saw on facebook ( I went to grade school with Ryan). My best friend is actually going through a similar situation with her son who was born with peirre robin syndrome (she also had polyhydraminos) and her son ultimately had a jaw distraction due to his tongue obstructing his airway (obstructive apnea) due to his small jaw and features. Due to the surgery he has needed a trach to support his airway while the jaw healed and a g-tube to feed him since he was aspirating. I'm not sure if this jaw distraction was the " plastic surgery" you are referring to, but if you have any questions about it I could connect the two of you.- Lauren