Tweaking the Meds..




Mom - Can't you see I am resting here..!

 
Today was all about recovering from a tough day yesterday... lots of sleep. Sam had been on a new medication to stop the Bradycardia called Robinul. It is a anticolinergic medication that drys secretions which would then help with relaxing an overstimulated vagal nerve that seemed to be causing his heart to slow and actually pause for periods.. very dangerous scenerio. It also has an increase in heart rate as a side effect. Immediately we had watched it dry out his lips, mouth and eyes..all the congestion becoming thicker and harder to pass. Then yesterday Sam went into respiratory distress and could not seem to breathe on his own... my belief is the meds dried up his congestion and then blocked the airway..sats started dropping etc.  He was badly retracting (more than usual), nose flaring and pretty stressed out. It probably did not help that he was emergently intubated the day before during his MRI when he stopped breathing on the LMA tube (smaller breathing tube only going down to the larynx). So yesterday his blood gases were high for CO2 and so they were about to intubate him when one of the docs said we should try other steriod options and breathing treatments first keeping in mind his history of vagal responce to stuff placed in the airway.

His chest X ray showed no infection and all secretion tests are clear of the main big viruses.. I was glad we avoided another intubation.. he has issues with those probably from the tracheomalacia paired with the hyper sensitive vagal nerve. SO.. after some cpap and such he was weaned slowly down to currently being on room air by nasal cannula at only 1.5 liters. He spent the day resting today and being constantly suctioned. Now he is moving to a lower dose tweaking the levels so we find a balance between stoping his bradys and not overdrying out his body of all secretions. He had yet another floroscopy upper GI done to confirm for final knowledge that he is NOT refluxing and his fundoplication (the surgically placed stomach flap wrapped around the espohagus) is NOT too tight. Jason would love to stand on the roof tops and shout "FOR THE LAST TIME.. THERE IS NO REFLUX!!!!!" That might feel good to shout but won't convince the docs .. so we had to continue radiating the poor boy.

All kidding aside.. it was all as it should be on those tests and apparently they are that much closer in the understanding of what is going on with him. It seems that they think his vagal nerve is unconventionally way over sensitive and so much so that it has big implications on the autonomic process of the heart. The heart has autonomic and sympathetic forces for the firing of the electrical impulses that control heart rate..his was not firing right because it was constantly getting messaged by the vagal nerve to slow down or pause. I am not a Dr.. so forgive me my laymens simple understanding..but in addition to this vagal sensitivity they believe that possibly other parts of Sam's autonomic and central nervous system may be getting mixed messages due to a problem with the mitochondria (powerhouse of the cell) or some other part of the metabolic or neuromuscular process..That is why a muscle biopsy next week may be able to enlighten us as to the origin of his problems. It is incredibly scarey to read anything about mitochondrial disorders of infants. Don't even look. Whatever it is I need to know and then I can fight like crazy for him. They talked about how the main benefit of knowing is that you can possibly watch for outher multisystem issues that could be down the pipe.. "other multisystem issues??" I said. Could more happen to my baby then what we are already dealing with..?

I prayed about it after they said that..and realized they are right..better to prepare our hearts and minds that something bigger may lie ahead and pray for strength but to know that even with the diagnosis if one is within reach..we may not be able to treat it. Living in the dark is not in my nature and I don't want to live in fear. God made me in such a way that I am never satisfied to just let stuff happen to me.. or to stand by and not give a good fight. We are constantly working to improve, better ourselves and our understanding. But he tempered that need to constantly expand our knowledge by saying that we should not lean on our own understanding...we have to trust Him that He has a plan..we can't expect to know or understand everything..it is too vast and deep for our greatest efforts to begin to fully conceive. I was so happy that Jason got to come share lunch with me and visit with Sammy. He is trying to come again with the girls tomorrow as we have a room for the night at ronald mcd house. I really miss my family! I was also thankful to have a visit from Sam's developmental coach today.. a sweet friend we have made through all of this. She came last weekend and is always an uplifting presence to us. Some people are like kindred spirits drifting in just when you need them in life. This is something my best bud at age 8 used to call those unique friends that God meant you to make in life..she past away when we were 12. She could have been 60 for all her wisdom.

I was reading a recent blog update from a mom who recently lost her son to neuroblastoma cancer at 5. She is in so much pain and I know she must be repeatedly asking..why my little boy?..why us? How can you not ask it when you see that your sweet innocent son is put through the horrors of endless medical procedures and pain when serial killers and drug dealers walk the streets without issue..but in my understanding and maybe it seems twisted.. but maybe because they are blessed sweet innocent angels they struggle more.  It is not that God makes these challenges for them.. I don't believe God would create harm for any of us..but that he created a world that included injustice and pain so that we may choose the good in our humanity, that we may be thankful for our gifts and find the right purpose for our lives. Our growth and strength comes in the choices he gives us on how we handle every step of our lives. We fight for defenseless babies. We aspire to follow those who overcome adversity. We help each other when we are low. Those are our choices. If I look at all the harder times of my life, I see times of personal growth even if I feel anger that I had to endure it to become stronger. If we are lucky enough to not have to go through trials in our lives..we experience empathy by choosing to relate with others. So I am trying to keep reminding myself that Samuel is teaching us and helping us to be better..He may not have choices at this point in his young life but we do..we have to choose the right way to live amidst these challenges.

I want Samuel to have a chance to experience all that we have one day. I doubt he will ever take anything for granted in his life. He will probably appreciate the gift of breathing easy and swallowing each bite once we get to that stage. He will appreciate a warm bed at home without the interuption of beeping machines and constant poking and prodding. I hope he will never question being loved. And although they are not experiencing his pain themselves..my hope is that our girls won't take any of that for granted either. Thank you Lord for the gifts of appreciation in our lives and help us find a greater purpose for our lives. Right now our main purpose seems to be to protect and care for our sweet children, trusting God about the path ahead.
   
  Prayers for tonight are for my friend Robin's father still dealing with lung cancer and pneumonia concerns, for a friend Susan from my church back in the hospital, our choir director and his family as his wife Renee fights cancer that has spread to the brain, and for two special highschool friends, the Anderson family, who welcomed their second child yesterday and who is fighting respiratory problems in the NICU..their anguish I remember too well. Finally.. I have a big praise of thanks for the news of a new baby to join the Kelton family. God bless all these families.