Scans done, the wait begins...
This photo is of Eden and her great friend, Jackie. Jackie works at Children's but is a patient of Momma Hope's from the dental office (that's how we met). We hunt down Jackie every chance that we get because Eden loves those hugs!
This week has been okay, not great but we've had worse.
Eden had her bone marrow aspirations on Monday morning. The surgery was almost cancelled because the folks in the new surgery center do not know that I do the hospital stuff and actually required a legal guardian to be there before they would even check Eden's vital signs. While we waited for Dad to arrive from Marysville, Eden and I went to the clinic to have her port accessed and to have her labs drawn. Thank goodness we did the red blood cell transfusion on Friday or she wouldn't have been able to have surgery at all. Thankfully Dr. Olshefski was running behind schedule, so he didn't even know how stressful that "legal guardian" scare was for me.
Anyone know an attorney that can write a limited power of attorney for a greatly reduced sum? I've been doing this stuff for Eden for two years, I think it's time to at least cover sedation, scheduled procedures like bone marrows and such. It would make it much easier for me to help Rourke and Lisa take care of Eden.
Eden didn't need transfusions on Monday, so she and Daddy headed home and we all took a big nappy-nap.
Tuesday Eden was able to attend a full day at school. I picked her up and we headed to Radiology at Children's for her MIBG injection. She got a great surprise when Volunteer Dave showed up to play with her. We finished up and I had promised her a trip to the "cool" playground across the street for the ER. Dave tagged along and played like a large version of a six-year old. I got to watch them have a ball. They came over to let me know that Eden's nose was bleeding and to get a tissue. I gave them a tissue and they went to play, while I called Faye, Eden's nurse practitioner. Our timing was lousy and the clinic and Day Hospital were closing for the day. Yep, you guessed it: we went to the ER.
Let's just say that for being the second best ER in the country, we were very unhappy with the way that Eden was treated in the OR. They could use a lesson in how to keep immune-suppressed children from contracting illnesses.
The triage nurse was great, although she did let Volunteer Dave's antics distract her a little. She didn't make us wait in the waiting room and got us into a room rather quickly, around 5:15- 5:30 PM.
It took them two hours to even draw her blood for a CBC and 24 hour cultures. The resident that I talked to treated me as if I had no idea of how things worked. She um'humed in all the right places and then we saw no one until 7 PM, can we say "Shift Change"? The nurse came in to draw blood and just as she headed out the door Rourke was coming in to find out why in the world we weren't transfusing yet. He had already been to J5 to see if anyone could help us and then found the ER attending to raise heck, too.
Stat blood counts only take an hour to come back from the lab. They didn't start a transfusion until after 10 PM. Rourke and Eden arrived home after 1 AM! She had to be back in to Radiology at 8 AM for her MIBG scan. He had to get up for work at 4:30 AM. Does this seem like good patient care to you? We are extremely unhappy.
Eden could have been exposed to NUMEROUS illnesses while in the ER and they made no effort to expedite her dismissal. All she needed was a platelet transfusion to ensure that she would be able to have the MIBG scan (sedation) done this morning and yet they dragged it out by hours.
Today the MIBG went very well. We have no results yet. I won't publish anything here until Eden's parents get real answers, not preliminaries.
Eden has no ability to fight infection right now. Her white blood cell count was 0.4 this morning. PLEASE keep your germs away from Eden: she tends to pass them right on to me!
She plans to attend school tomorrow, for the whole "half-day" that she attends. She's very excited to be able to go two times this week. She really misses her friends when she can't go to school.
Friday is another full day at the hospital. Hopefully Mom and Dad will have some test results back by then too.