Lisa Santos’ Parent Diary: May 2009

Matthew is showing signs of slowly improving. It is a roller coaster ride. He will have a good restful sleep, then a good morning then all of a sudden he has trouble managing his airway. The nurses and the respiratory therapists will spend hours suctioning him and trying to get him comfortable then we get some rest. Our hope is that he will get stronger as each day passes and be able to manage his airway by coughing and clearing his secretions, with only the occasional suctioning. He may or not come home with the C-pap or Bi-pap set up to help us help him breathe. My husband feels we are in for a few weeks stay at the hospital.

I must say that it is very hard to watch as he struggles to breathe. As of this moment we have made the very tough decision that we will not intubate him if he can not recover. We will keep him comfortable and then let him go. I say that now as he is not struggling consistently. I hope that I have the strength to follow through with our decision when the time comes. At first I could not “wrap my head around” the thought of letting him pass. But there is nothing worse than watching someone gasp for air and there is no way that I could allow him to not only rely on a tube feeding but have him be connected to a tube for breathing. He would be bed bound for sure and even though I sense that he does not want to pass, I know that his spirit would die if he were connected to so much life support.

I find myself grieving more for the changes we are experiencing in his life. I pray for strength to get through this and I am trying very hard to take care of myself by going for walks, eating right, getting the sleep I need and letting the professional staff manage his care.

Since our return to the hospital I have found the ICU staff to be much more compassionate and caring. We now have full cooperation from the Neurology team and his own Neurologist comes by to check on him daily. They are using the drug Robinol to control his secretions and I have also heard about other methods (salivary gland removal) that they could use to help him out. They moved him to a room that has a much better view of the city and is much larger. They set me up for a chair massage and the RN staff has been more consistent in meeting his needs appropriately. I am in a much better state of mind than I was before.

Psychiatry has been in to assist us. They found a research article published by Dr. Minissian and others about a child with Lafora that showed signs of hallucinating. It was determined that the child’s hallucinations were not related to an increase in seizure activity, but dementia brought on by the disease. They prescribed the drug seroquel and she was better immediately. The article was published in 2005. We have a prn order for this drug. I work with the nurses to have them not administer more drugs, but try and figure out what is bothering him first. I know that hallucinations are a strong possibility though as when Matt was able to talk he used to tell us he thought his fingers were cut off and bleeding.

Thanks for all your caring thoughts and prayers,

Lisa Santos

**Read the update on Caring Bridges for Matthew DeSimas at the link below

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**CaringBridge is a free, nonprofit web service that connects family and friends to share information, love and support during a health care crisis, treatment and recovery.