Another Medical Hurdle

The other day, Banshee and I made yet another trip down the highway to the Children's Hospital. This time it was an appointment with the GI Guy (GI Guy - it almost sounds kind of fun, doesn't it?). Ever since her 'episode' back in August, her tummy has been a constant source of grief for her, so the pediatrician felt that we should probably see the GI folk - just to make sure that things were OK. I wasn't really thrilled at the prospect as I really felt it was just their way of erring on the side of caution, and going to these appointments inconveniences many people (Banshee, me, the school and all my daycare families). No big deal . . . it was a nice chance for a Banshee and Mommy day, so we went with it.

As the days passed leading up to the appointment, I felt no concern, anxiety or worry about this trip at all. At the very most I was prepared to hear them say that she had an ulcer, or something else equally as simple. So, we packed up some snacks, some small games, colouring books and crayons and books, and headed out. It was a leisurely drive down, with us making a few stops along the way. When we arrived at the mall (we catch the subway to take right downtown . . . this old bitty does NOT do city driving. Or city parking - OUCH!), we browsed through a few stores and made our way to the subway platform. We rode uneventfully to our stop, walked to the hospital and had a nice lunch together.

After lunch we registered at the clinic were going to (that in itself caused a wee bit of grief . . . it was in a part of the hospital we've never been to) and sat in the waiting room with a HEAP of other people. For the first time ever . . . I wasn't overwhelmed by the major sickness around me. I never saw even one wheelchair bound or cancer patient . . . which knowing where I was is a HUGE thing. I actually felt good about this appointment. In this waiting room there were about 25 other children, and all of them were seemingly healthy and happy children. Not one had an NG tube or anything other 'equipment'. As the time passed, I felt more and more at ease. Banshee and I happily played the Wii, then the Xbox, and then watched a movie together (yes, the wait was VERY long).

They called Banshee in for a quick weight and height check. She hadn't gained any height or weight since the referral was submitted in September, but I wasn't concerned because it IS a different scale and a different person doing it. The biggest thing is that she had not LOST any weight. Again, we headed back to the waiting room, where we coloured and watched a movie. Finally we were called in. I was cool as a cucumber going in there, and when the specialist walked in, we lightheartedly talked about the weather, holidays, kids and where we lived. The specialist asked me to fill him in on what our concerns were based on, and then he'd go from there. I did that and still felt great about things. I mean, really, Banshee has come a LONG way from that terrible event in August.

Then he started asking questions. Specific questions that started to put me on edge. Like REALLY on edge. I knew that things were starting to go the wrong way. As we answered each question, a feeling of dread started building up in me. In the middle of it all, Banshee announces frantically that she needs to use the bathroom. That she needs to poop. The nurse runs and grabs a 'hat' to catch it (talk about convenient timing for a stool sample). It was liquid. As it usually is after she eats (she'd had a granola bar and clementine about 15 mins prior to this poop). The dr and student dr exchanged looks that I've seen all to often. Something isn't right and they're about to deliver a blow.

And he did. In fact he delivered THREE blows.

The first one was the fact that Banshee presents as though she has Celiac Disease (which is basically the body's inability to break down and deal with gluten (wheat, grains)).

The second was that they have some concerns about the function of her kidneys, and that she'll need some further investigation into that (he doesn't deal with that aspect, so we'll likey be off to see yet another specialist).

The third was his concerns about her adrenal suppression/cortisol deficiency problems. He noted that her cortisol levels were not just low, but moreover non-existant. He stated that cortisol levels that were non-existant over any period of time actually indicate adrenal FAILURE, not just suppression. He doesn't feel that we should really just be in a 'sit back and wait' mode.

Fantastic. Now I'm sitting there feeling as though I'm about to hurl. I heard the words he was saying, but I wasn't really "hearing" it. I heard the part about blood tests, other specialists, and a scope so we can get a biopsy of her bowel, intestinal tract and stomach. Next thing you know I'm handed paperwork and we're shipped quickly down to the lab.

The first task was getting a urine sample. Have you ever tried to get a urine sample from a young child?! It's not really a fun endeavour, nor one for the faint of heart. From previous experience, I rolled up my sleeves and got into the stance. Banshee perched herself on the toilet and I instructed her to pee just a bit so we could get 'midstream' pee. Yeah. I might as well of asked her to pee through her nose. Once she starts, she's not stopping enough for me to 'safely' and dryly get in position. I shove my hand in there with that sterile cup and try to catch it. Suddenly she's starting and stopping her stream and says "Look Mommy! I can make a pee pattern. Long squirt, short squirt, long squirt, short squirt . . .". Sure thing, that's great as I chase the stream trying to catch it. I didn't get a whole lot into that cup (but thankfully it was enough), but I certainly caught TONS on my arm and hand. YUM! We got all cleaned up (I pretty much needed a bath after that), and went and sat in the waiting room in the lab.

I was getting myself pretty worked up about this blood draw. While Banshee is always a very co-operative donor, it's always because we use magic patches (EMLA - it's a cream that freezes the injection site). We didn't have magic patches this time. First of all, this hospital doesn't really endorse them - apparently they can constrict the veins, and second . . . we didn't have enough time for them to take effect. YIKES!! I warned her over and over that she would feel that prick of the needle, but she didn't really seem too concerned. One by one, the kids in front of us made their way to the lab, and one by one, they all screamed. Each scream raised my stress level. I was anticipating what this draw was going to bring for Banshee . . . and it wasn't a pretty picture that I was painting. Next thing you know the bell chimes and the voice announces "Number 43". It was our turn. Banshee hopped off the chair and skipped into the lab. She perched herself into that chair, and declined the offer to sit on Mommy's lap. I reached around her and held the arm about to be poked, and then held her other hand. The nurse was quick and efficient (got it in one very quick poke), but I could feel Banshee tense up. She never said a word or uttered any sobs, but I could feel her hot little tears sliding off her cheeks onto my hand. Her 'free' hand squeezed mine with all her might. It hurt, and she was being SO brave. She sat there very bravely enduring the many vials of blood they took. When it was finished she quickly and quietly walked out. Once we stepped foot out of the lab, my sweet little girl leaned against the wall and slid to the floor in a puddle of sobs and despair. She was desvasted that she hadn't been given any stickers or rewards (bravery beads, etc). Something that every other kid had received. I realized then that her compliance probably is what caused that. The nurses probably have to BRIBE the other kids with stickers and rewards, but Banshee doesn't need to be bribed. She also hadn't rec'd a 'fun pack' from the specialist either. Another oversight. I needed to 'fix' this for her, so I turned to return to the lab, but the door was locked. They were closing. As if she were an angel, a pharmacist who had been in the lab at the same time as us came walking out. She had commented and praised Banshee for her bravery while we in there, and of course saw this breakdown occurring. She hurried into the pharmacy and returned with a bag of chips, some stickers and a toy. She had saved the day.

We packed our stuff and hurried out of the hospital. I was feeling pretty clausterphobic at that point and needed to clear my head. Too much information and 'news' to digest. We headed to the subway (in the near future I'm going to elaborate about the amazing thing we saw on our subway ride home), and returned to the mall. As we walked through, my brave little girl asked if we could stop and have dinner at the Rainforest Cafe. Although I dislike the place, I agreed. She needed something to go her way. We enjoyed our meal (and the rainstorms we sat through); we checked out all the animals in the cafe and then headed for home.

She slept most of the way home. Mommy thought. And stewed. And worried.

We definitely didn't get the report we thought we would. In fact it was WAY different than I ever anticipated. I find that as we go through these medical appointments, things just don't ever get solved . . . they just get more complex. As this dr indicated, Banshee has a whole lot more going on than "just" asthma. There are various aspects of her system that just don't seem to be working right which sort of proves that there is "something" going on somewhere. The problem is finding that 'something'.

Anyway . . . onward we march. She's a tough kid and a fighter. IF celiacs proves to be an issue, it isn't anything major, and is most likely 'easily' dealt with through diet (Gluten free). They'll be in touch in the next couple of weeks, likely to schedule a date for her scopes and biopsy's. We also see the asthma specialist in the upcoming days, and hopefully they'll put some of my new found concerns about adrenal issues at rest. Until then . . . we wait with bated breath that she doesn't get sick.

Oh - and to add to all that?! Our Nurse Practitioner left the practise she was at. Although I'll miss her - she was fantastic - I DO understand her reasons. Back when I found this out, they had indicated that the plan was to get a new NP in the office and that we could stay with the dr's for the time being. When I called this week to get an appt for myself regarding scheduling a minor procedure for my toe, the receptionist told me that we have to look for another doctor. That we're basically out on our ear. She's not even sure if the dr that started dealing with my toe will be able or willing to do the procedure. That also means that all this waiting I've done for a referral to the specialist about my tailbone is going to be all for nothing. I'll have to start the process again with yet another dr . . . and that's ONLY if I can FIND another dr. Those that know the area where we live know that dr's are in high demand here . . . there isn't any choice - you just take what you can get (and most often, there are no dr's accepting new patients). That means that my 'sickly' child is going to be without a constant medical professional. Nice system, huh?!