The Plan

Last week we had Immunology on Monday and then an appointment with Kara's primary doctor on Tuesday. Since then I've still been trying to process what the right thing to do is and have been an absolute rollercoaster on my decisions. (Or lack of!)

Our frustrations with the GI department at the U of MN have gotten out of control. Our doctor has sensed this and being at this appointment reminded me of the last conversation I'd had with her when I started to tear up "I'm just so frustrated!". Brian was with at this appointment on Tuesday, as I knew it was going to be a big one, having just found out about how low Kara's IgA actually was, with her other health problems. We were both trying to referee the girls and talk with the doctor which was difficult. She put it out there that she thinks we really need to get another opinion, a brand new set of eyes on Kara because there are obviously other things going on with her than "just" her typical FPIES symptoms. She carefully put it out there that she really thinks we need to get a consult at Mayo. Now. I wasn't really happy about this - I had finally found faith in Kara's GI doctor, despite the rest of the department, or the nurse coordinator anyway, being absolutely awful to work with. Besides that we already have to travel 2 1/2 hours away for Kara's appointments, and Mayo is a good 4-4 1/2 hours away from us. Brian and I looked at each other, I think feeling the same thing. This isn't going to work. The doctor explained the process of getting her in and how she felt Kara could benefit from a consult there and by the end of the appointment, I think we were all on the same page. I was ready to start over, from scratch and get a fresh opinion on everything that has been going on with my girl in the last few months.

We got through last week, that appointment being Tuesday afternoon and knowing that the process would be a while and if we didn't hear something in a week to let them know. Wednesday I went home early from work because of not feeling well, Thursday I stayed home. It's time for those fall allergies and they have left me feeling awful. Friday morning I went to the clinic and actually had an appointment with Kara's doctor for these allergies and we just briefly talked about Kara again, still going with the same plan. This is where you read the previous post about how quickly things changed for Kara and how she ended up in the hospital Friday night.

Enter Saturday morning. Our doctor came to Kara's room and we spoke more about Mayo, finally realizing that my girl is SICK and we need to have another look at her, there is no choice. She got on the phone with the on-call GI doctor at the U and that's when they decided that what Kara was going through was a classic FPIES reaction, only pretty severe. She was discussing the rest of Kara's symptoms and let the GI doctor know that she was going to be sending us to Mayo and the doctor responded with the fact that she doesn't think Mayo is going to be able to do any better for Kara than they are able to do and really feels like with Kara's complex history and a complex family history of GI problems, that we need to jump right to the speciality centers. Her suggestions are Cincinnati or Milwaukee. GULP. "How the heck are we supposed to do that?" I asked. We are struggling! I guess things have a way of working themselves out and that Cincinnati has a great Ronald McDonald house. She left us to think about all of that and said we'd talk about it the next morning when she was in again.

Throughout the day it was all I thought about. Milwaukee is 6 1/2 hours from here and Cincinnati is 13 1/2. Either way it's going to be quite a trip. Cincinnati, from what I've found, is "better" - a little more specialized and has the team approach right there of exactly what we need: gastroenterology, immunology, allergy, dermatology, possibly hematology amongst others. I settled at the moment that if we have to travel at all we might as well go to the best instead of the closest. Brian and I talked it over, I made some phone calls with some resources I have, did a lot of searching on the internet. My thoughts went from "lets go" to "hell no" every five minutes.

That evening I had a decision that in my mind, worked fine. We need to find someone in MN to just do a scope on Kara to see what we are dealing with and then, if needed, we'll go out to Cincinnati. Simple enough, right?

Dr. M came in the next morning and I explained this to her. Basically we don't have much time to waste. If we messed around with trying to get it done here only to go there right after, they would start over doing their own labs, their own scopes because they'd want different looks at this, a different slide of that, and it would be putting Kara through all of it twice. As it is she's had way too much blood drawn, way too many needle sticks and it's heart breaking. Besides, she has had anesthesia reactions both times she's been under so it's just something we can't mess around with. We need to do this. There is no questioning it.