We had another IVIG infusion today at FA clinic. It went smoothly with no reactions as usual. Elias counts are holding steady and looking wonderful. Dr Mehta is pleased that his IGG levels are rising, but still wants to go bi-weekly with the infusions for awhile. When we did the first infusion his level was 308, now after several infusions it is up over 800. The acceptable range is 400-1200. Elias is in the middle now but they would like to see a little more improvement. It is really helping keep him healthy overall in our opinion (quick everyone knock on wood NOW!). We are in agreement that we should continue and have no problem with the hectic schedule it creates, the cost, well that’s a different story, but it is worth it.
Elias has continued to improve from his increased floppy airway issues. He has been a bundle of energy today. Last night though he fell asleep at 8:30, that is unheard of for Elias. A sure sign that what ever was going on inside was wiping him out the last few days. It was obviously the proper medicine though. It was nice for us as well to catch a few extra winks ourselves when we could.
Elias had OT yesterday which went well in the morning, but we also had our developmental interventionalist out in the afternoon. Despite our warnings that it wasn’t a good idea she only had that day/time for the entire month. It was a bust. Elias was so sleepy and simply refused to do anything. He was crying and screaming almost non-stop. After 10 minutes despite her continued efforts I put a stop to it and we put Elias in his play pen for a nap. He fell asleep instantly. Poor little man was so tired.
The stress level this week for Katharine and I has been a little high. Most of that stress at the moment is centered around the nursing, or lack there of. As those of you who have been following us for awhile know, we are very strong advocates for Elias. The past two weeks were the final straw with the nursing agency, their inability to staff us, their outright lies, and their admission to accept things are what they are and they have no intentions of even trying to improve them. We even witnessed them treating a mutual business partner in the same manner, not to mention another family. This is obviously their standard. After speaking with several individuals right up to the Vice President it is was made very clear that they are unwilling to do anything to improve upon our situation. In fact they defensively insist that they are indeed doing everything they possibly can. 3 Nurses in 18 weeks to interview is their best. I’d hate to see them at their worst. The VP appalled me by boldly stating that at some point shortly after discharge we indeed had night nursing and it was through our choice that we no longer had that service by dismissing the nurse. I fired back asking her if she was even aware of that nurse’s obvious short comings and lack of skills in regards to the ventilator. Her only reply was, it is difficult to find ventilator trained nurses. So they expect a parent to be willing to compromise on the quality of care on the basis that it is better than nothing. They snidely remarked on several occasions that perhaps I should look elsewhere if we did not agree with their assessment of their positive performance knowing damn well that no other agency that accepts our waiver is currently accepting patients. So we are left with only one choice, either drop them all together, we would only be sacrificing an average of 30 hours per week (we are suppose to get 112) or if we chose to stay they will staff us when they staff us and we should not and do not have any right to complain further. Their words, not mine. The deception, lies, and poor treatment of us as clients makes it very difficult to want to continue business with them, not to mention trust them. The disturbing part in all this is there is no one who will advocate in our favor and no governing body that holds the agencies accountable. So they can indeed treat us this way and get away with this. This is a very difficult position to be in and the decision is pending. We have also had several social workers helping to research and find resources out there to help us with various situations we are up against and we keep hitting brick walls. Even Katharine’s employer, which has an employee crisis program to assist in various ways during rough times is not an option for us. We do not qualify within the scope of the program! It is truly amazing that there is not anyone that has been able to steer us into the direction of any help. The few things we have been pointed to have all been denied or again we do not fit the scope of the program. It simply baffles us how trying to do the right things for our child has landed us into such an unforeseen mess.