4-9-12

We have had quite the day today. First off, Claire is doing alright but the medication (Decadron) is not having the effect that the doctors had hoped for. "Typically" the response is usually pretty immediate and the ventilator settings are able to come down rather rapidly. This has not been the case and Claire has been on the medication for a few days. The chest x-rays have been about the same- little to no change.

Today we had a hard conversation with the doctor. I think it is important to be honest about what we are facing and that is why I am sharing it with you here. Essentially the conversation revolved around various interventions that could be done in an emergent situation. We had touched on this topic a bit with our doctor last week, but this was a more detailed conversation. I asked the doctor today why we were now having this conversation (and why we had not prior to this point) and she indicated that it was namely because of the lack of response to the medication and the prolonged time on this level of ventilation. Because she has been on the ventilator so long without making headway, it is appearing more and more that her lungs are likely intrinsically ill.

The doctor presented various interventions that could be performed in the event of an urgent situation. I'll try to keep this brief, but some of the interventions included medications such as Epinephrine or Adrenaline, chest compressions, removing air trapped in her chest cavity if the situation was a tear in her lungs, and others. Many of these interventions have pain associated with them and may merely prolong the inevitable. Jerre and I are grappling with what we think would be appropriate or not should the situation arise so that they can have our wishes on file. I can't even express to you how difficult, traumatic, and stressful a position that this is. Frankly, I don't know how we are even able to function right now. I know that a lot of it has to do with all of the support that we are receiving from close family and friends so I thank them for that. Addtionally, the respectful and sensitive treatment that we receive at Providence on a daily basis helps us immensely.

All of these circumstances have also led to my decision to cease pumping. With all of the stress that we are under, I no longer have the time or energy reserves to continue. This was a very emotional decision for me to make but, in order to take care of myself and my daughters the best that I can right now, it really is the only option. The time that we have with Claire is so precious and it drives me insane to be strapped to a machine when I could be close to her. At home, I need to be there for Julia or have time to rest and take care of myself- otherwise I won't be doing anyone any good. There is a good supply in the hospital freezer and at home, so there will be a store for her should she need it. At this time, she is still on the Neocate basic formula.

A few other medical notes- Claire's white blood cell count tonight makes the doctor suspicious of an infection so she is ordering cultures of just about everything to see if anything shows up. Nothing has so far, but they will do them all again and keep a close eye on her. She is not showing other signs of infection right now besides this cell count.

Claire also had a very rough afternoon as far as her agitation level. When I visited tonight, they had finally gotten her settled down and sleeping but she was awake from 3-7:00 according to her nurse and she was upset nearly this whole time. She received the medications that she could receive, but she was not a happy camper. I hope that tonight is restful for her and that tomorrow brings more calm- for both her and her parents.

Thank you for your continued support of Claire and our family.