Always Eventful

Today started out great. Avarie has been having a great day playing with her sister and brothers. She has been happy and even eating a little. It is so great to see her with such a pure joy smile on her face. She loves being home with her siblings.
Around 11 am though we had another nose bleed. It wasn't bleeding crazy like Tuesdays nose bleed was, but it wouldn't stop. It went on for over 40 minutes so we had to call the Dr. She wanted Avarie to go in for a platelet transfusion. We decided to take her to Legacy Salmon Creek because it is closer to us. In hindsight that was not the smartest decision. They are very nice there, but they do not handle oncology kids very often and so there were a lot of things that we just take for granted at Emanuel that were a little more difficult there. Like the fact that Emanuel is located down the street from the Red Cross. Salmon Creek is not and so we had to wait over an hour for her platelets to arrive. Also our nurse was not a pediatric nurse and so she kept thinking that something was wrong with Avarie's port because everytime she touched it Avarie would scream. She was convinced there must be an infection or something. I kept trying to explain to her that Avarie is just very traumatized and will cry no matter what she does to her. She is ok if you are just giving her a med, but the nurse couldn't get the platelets to drip in the beginning and so she was trying to move Avarie's port around. Avarie was not happy about it and cried hysterically screaming "OWWW". So she made the Dr and the IV nurse and someone else come in and evaluate it. Once I explained to them that Avarie has Post Traumatic Stress from everything she has been through and they saw how she cried when they even touched her blanket saying that that hurt they stopped worrying. We did still have the problem of the platelets dripping in slower then normal, but I was not about to let them de-access her port and then re-access it. That would mean her having to get poked again and that is so traumatic for her everytime they have to do it. There is also the problem of them actually getting it accessed again. The last time we had emergency room nurses try to do it, rather than our oncology nurses they poked her 5 times and weren't able to access it any of the times and then our oncology nurse the next morning did it once and got it on the first try. They are just more experienced at it. I hope that doesn't sound like anything bad against ER nurses, because they are truly wonderful. I just don't want to put Avarie through any more then she has to. So I told them no I was not a fan of the idea of de-accessing her. We had good return on the line and we were able to push in meds, it just had a lot of resistence and so the platelets weren't flowing as smoothly as they should. But the platelets eventually all got in and we were home by 5:30 or 6. I can't remember exactly. Our wonderful neighbors came and sat with the other kids. We thought we would only be gone for maybe 2 hours, turned more into 4.5-5 hours. The Boes' even made dinner for our kids and had them all sitting down and eating when we got back and they picked up our house a little and did some laundry. They are such amazing people, I had to make sure I shared a picture of them so that everyone can see who they are. There are so many people that we never could have made it through all of this with out their help and the Boes' are definitely at the top of that list.

We are home and all the kids are in bed now and so we hope for a good day tomorrow. Tomorrow we meet with the transplant Dr's at OHSU for a consult. I'll let you all know how it goes and what we find out.