Down in Little Rock

Thank you all for your prayers concerning our trip to Little Rock. It didn’t go quite as expected, but perhaps it was for the best.

Emma was having one of her bad days. I had to turn up her oxygen on the way down to Little Rock, but as you all remember, I was hoping she would show the doctor some of her problems. Our appointment was at 1:00. At 2:30 we were still waiting, but they told us they were just waiting on a room to see us in so they took her in and weighed her, etc. Then they sent us back out to the waiting room. A few minutes later they sent us to get a chest x-ray. Upon returning we still had to wait until about 4:00 before we got called back to draw her blood for the blood tests. She had to get stuck twice to get the blood because it is really hard to get blood from her. This got her really mad. During the second stick I noticed her agitation was not in proportion to the stick and that she was going into a spell. When the lab flobotomist (sp.?) left I told her that Dr. Carroll would probably want to see Emma since she was having a spell. My main concern at that point was actually that she would keep going long enough for him to see her. So I perhaps made a mistake at not acting as quickly as I usually do with the meausures to stop her, but I don’t know if they would have helped or not. As it was he definitely got to see her during what turned out to be her worst spell since before Thanksgiving. Her blood tests showed elevated CO2, while her pulse ox showed good oxygen levels during the majority of her spell. This is different than what we had realized before. Her electrolytes were also out of balance, but that could either be from being on electrolytes so long or because she has been retaining CO2. Because of the length of the spell (over an hour) Dr. Carrol admitted her to the PICU for observation overnight. I haven’t talked to the ICU doctor yet this morning, so I don’t know what the plan is as far as how soon she will be able to go home, but it sounded like this would not be anticipated to be a long stay.

The hard part is that I got what I wanted (who knows, maybe even the long wait was for the best so that we would still be here under the doctor’s supervision for the spell) but I am still not getting any answers. After observing the spell, the pulmonary doctor immediately said he would have to talk to cardiology. I told him what cardiology said about not being able to do anything else for her, but he didn’t have anything either. He did talk to her cardiologist, who was very frustrated with not being able to help Emma. The cardiologist said he would probably point to the narrow veins she has (with possible blockage) in her left lung. But they want her to get bigger before they can address that problem. So I may come home with no more answers than before but at least I know that one of the right doctors saw her spell and that they are all definitely taking Emma seriously.

I told him I would accept it if this is what we will just have to deal with for now, but I wanted anything they could give me to make it easier to deal with at home because going to the emergency room every week was not a good option, especially since they don’t end up doing very much for her that I can’t do at home. Mom just told me that the nurse said Emma’s CO2 was fine at 1:00 last night, so that is a good thing. The only thing I worry about with letting Emma continue her spells are wether or not they are harming her in any way, which hopefully we will find out after her MRI in 3 weeks.
If we don’t all come home today, my Mom will be driving home by herself this afternoon so keep her in your prayers. Also pray that the doctors will have wisdom and I will have faith that God knows what is going on and it may be OK for us not to know at this point.