I mentioned previously that I would tell all about how we had such a great experience during Em’s recent appendectomy. For someone who has tried very hard to keep my kid away from the surgeons and who has some serious trust issues with doctors, this was a very scary episode. Of course, it is never fun to let your kid be wheeled into surgery, but that feeling is multiplied when you are dealing with a rare and serious medical condition.
We are home now – got home last night about 7 – and she is doing really well. So, I have some time to sit and tell how right things went for us and how blessed I feel. It is a rare thing when every single thing goes right, but in our case, it did and I am immeasurably grateful.
I was apprehensive about heading to the ER in the first place, but it was apparent that we couldn’t avoid the ER this time. But, both doctors we saw were great (we were there for shift change). The first one, was very quiet but listened at lot. He didn’t argue when I said we needed to rule out an abdominal rupture. He said he was ordering a CT and we would get to the bottom of what was going on. The second ER doc, once we knew it was her appendix, asked questions about what type of EDS Em has. He said he remembered there were several types and that some were dangerous. When they asked where we wanted to go, I said I would prefer Cincy but insurance wouldn’t pay. He told me he would ask at Riley and if they couldn’t do it, they would see about getting us to Cincy. They took all of my concerns seriously and put me at ease.
The radiology nurses at Reid were great, and listened to me at every step. They had a heck of a time getting the IV started but they tried to be so careful and felt terrible that they were hurting her.
The paramedics who transported us to Riley were great. They asked questions, let her transfer herself to the gurney and told the ER staff at Riley to let me fill them in, since I knew more about it than they did.
The nurses at Children’s were great, wonderful, awesome – what nurses should be. Riley attracts the best of the best. (Having been a patient elsewhere, I am thinking it is not quite fair that Children’s Hospital get all the best nurses – it would be nice if they could be spread around a little… But, I guess the kids deserve them, so I won’t complain!) One of the nurses who took care of Em, even has a best friend who has EDS, so we really felt like we were in the right place.
Best of all, the surgeon was awesome and actually had experience with EDS kids. Her first words to me were ‘I have operated on enough EDS kids to know how very special they are.’ She never claimed to be an expert, but her actions spoke for her and she consistently demonstrated she knew a lot about EDS. She spoke about the fragile intestinal tissue (she said, “I like to say, it cannot take a joke”) and she debated about which method to use – laproscopy or traditional. She was concerned that laproscopy would cause problems for the intestines and opted for the traditional method, although she admitted neither option was perfect and she did not presume to think she had the answer.
She told us she would make a small incision, very carefully split the muscle instead of cutting through it, and very carefully search through the intestines to find the appendix. That she would stitch inside but not do any stitches outside. I agreed that the traditional method was the best way to go – it is a very small incision – perhaps 2 inches, maybe only 1 1/2 inches. If Em had been known to have real issues with wound healing, we probably would have gone the other way, but the traditional way seemed like the right choice.
She also listened to all of my concerns – from MCAS and high intracranial pressure, to vagal nerve compression, to my concerns about Em dislocating on the table . She allowed Em to position herself on the table and then, when the surgery was over, she allowed her to wake up and help move herself. And she conversed directly before with Em and answered her questions – the end result being, Em actually liked her a whole lot. She had a very quiet, gentle, unassuming manner that very much put us at ease but she was also quietly confident and trustworthy. You can tell, I liked her a whole bunch too!
So, we ended up with the best possible situation and felt at ease the whole time (as much at ease as was possible in that situation). I believe we were led to exactly where we needed to be to get the best care. At every step of the path, we were surrounded by the very people who could help us and were exactly who we needed. When the local surgeon refused to do the surgery, we were a little disappointed – my husband knows the surgeon and was pleased that he would be her surgeon.
When we were told he wouldn’t touch her – wouldn’t even consider it, we sort of thought he was over reacting, that he could do it but was being scared away by the EDS diagnosis. We didn’t object to going to Riley, but we just quietly thought we could stay at Reid and be fine. The ER doc told my husband the surgeon was not even on the fence about the decision – he was definite about not wanting to do the surgery. By the time we got done talking to the surgeon after surgery, we knew we were exactly where we were supposed to be. And that the surgeon at Reid Hospital had done us a huge favor by sending us to Children’s. Andrew plans on thanking him personally next time he sees him.
So, that is our story. There is probably more but it was such a whirlwind and I am so tired that I can hardly think straight. I just know that I feel very lucky to still have Em with us and to have had such a positive experience during such a scary time.