I made the decision to postpone the spinal cord surgery until February unless something changes. He is walking and improving but things seem to be a little off. It has been a challenging week with Nathan, Christmas, his medicines and the insurance companies-well they have been a real drag for a few months now. I am not quite 100% and our support people just are not available for surgery 700 miles away in 2 weeks. I am not ready and we have the option to wait a little longer. More than anything else Nathan is not ready. He was pretty much immobile for 15+days, I feel like he has lost some strength. I am unsure if we have resolution on this shunt issue and we will see neurosurgery on Wed, Jan 21 to do the necessary tests to see if the shunt is functioning properly. If he is still presenting as he is today, the surgery will be in February after the MRI. The MRI will give us another look at the ventricles before surgery and we will be able to see any changes in the spine. I am uncomfortable with the surgery with so many other possible things going on, there have been so many strange events that have appeared and then resolved this year. This has been a difficult choice to make and I again hope this is right. If we have time to gather more info, we should take it-decisions like this are a luxury in this life. If his symptoms change, we will be straight back to Duke immediately and we will do what we have to do when we have to. It has taken some time but I have finally ran down Nathans meds, 3 pharmacies in two states for maintenance meds that have always been available until now. I am talking about a common seizure med, magnesium sulfate and Neurontin. I thought I might have to drive to Louisville but Kosairs does not have an outpatient hospital pharmacy and the pharmacy across the street did not know if they could get it either, inpatient hospital pharmacies have it readily available but will not sell it to me directly and will only sell to a pharmacy at 3X the cost. By the time it is marked up a 4th time and insurance only pays $16, no one will even fool with it. The pharmacies in this area just simply cannot get some of the meds that have always been available or they cannot fill scripts because they lose money. An extra $30 to have one shipped and the insurance will not pay for it but it is coming. The simplest things just really keep throwing kinks in the plan. We are laying low in the house away from all the sickness, this whole town has the yuck or the flu. Please, please stay away if you are sick even with a cold. A cold landed Shorty in Kosairs for 3 days last February with RSV. The flu shots seem to be ineffective so please keep your germs at home. Nathan does not feel well, he has slept most of the weekend and his temp is about 99, not much but he normally sits below 97 so wait and watch. Heres to hoping this new immune system he has been growing the past few months is booted up and hasnt forgotten how to fight these past 5 years. XO
Posted on: Mon, 29 Dec 2014 17:36:15 +0000
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