An appointment marathon (and some bummery news)

We had our marathon appointment week/abuse our sitter(sister)/Duncan's most fun week of his life week this week. It's not over yet, in fact, it got longer. Soon it will be over though.

Day one:
Starting on Monday we went to Dylan's Endo appointment. I was hoping to get to the lab first thing in the morning, I even got the orders all ready ahead of time (thanks Trina). It was in an effort to not starve Dylan all morning since she had a fasting blood test. I failed though. Between me running late and an accident on the freeway it just wasn't going to happen. We were just a little early to the Endo appointment instead. She did well during it though... I gave her a little more water while we were there to tide her over. We missed Trina though =(.

The appointment was fine, I talked to the doctor about keeping Dylan kind of on the smallish side, and she was really receptive. She had asked us in the beginning to think about how much we wanted to push things (as far as growing goes), so I knew she would be, but it was still nice to get an outsider's opinion. We didn't up her poke dosage amount, normally we would up it to the max for her new weight (21'7' on their scale) but we decided to hold off until we made some decisions. I think we are going to keep going with the pokes, maybe until she's 5... maybe until she's walking... and then decide. We wouldn't want to risk her muscles being effected when this point is rather critical for her. We are just starting to work with Mike, so close to making some walking things happen. One single refill of the prescription has us meeting our 100% out of pocket deductible... but when talking about Meds, we decided a long time ago that the financial aspect wouldn't be a determining factor... so I just mention it more for big bill fun!

After we went for our labs - she did pretty well but walking out she LOST HER MIND. Really, an epic performance. Starving + poke + bowel issues (discovered later in the day) = a really angry little person! She cooled off in the car and was fine for the rest of the day.

Also - we did the fatty liver test but it turns out that may only be associated with the SX13 gene mutation HPE, rather than Dylan's SHH HPE, but I had gotten the information second hand and I wasn't entirely sure. We were doing a poke anyway and Dr. Ped requested the full metabolic panel, so we stuck with it to make sure all is well. I suppose it doesn't hurt just to be sure.

Day two:
On day two we saw Dr. ENT. specifically Dr. Nose for Dylan. This was an appointment her dad was really pushing for because she has such a hard time breathing through her nose. He was planning on going but then had an important meeting crop up and I was on my own. As far as her breathing goes, her Pyraform aperture stenosis repair was done in Dec 2007 when she was a tiny pip squeak... but we hadn't really followed up with Dr. Nose since a few months after and we were probably due anyway.

He asked how she was breathing (bad... and worse on the left side), how she was sleeping (bad... but you know... who really knows why) and about how frequently she took breaths through her mouth rather than her nose (most of the time), and how frequently she comfortably breathed through her nose (rarely). Then he asked how far we wanted to go with this. That question kind of made me chuckle, because her dad was the one pushing and then of course he wasn't there! It was as I had kind of expected, potential surgery again, to remove scar tissue and bore any bone that regrew. Boo to that! But if we think she will be fine without then it's up to us.

He did say she was moving air through both sides, which we wondered, but not as well as after the surgery. He said that her nose was so inflamed that he couldn't see much and there's not even a way to scope her at this point, so he prescribed a steroid that will make that swelling go down. Then we would revisit in a month. Funny the med though, it's for EARS... not noses. He told me if the Pharmacist put something other than nose on the package to ignore it and do nose. Once a day, yucky drops in the nose it is!

Day three (aka: the bummerist of them all...):
We went for Dylan's bladder study and Urology appointment. She got a VCUG, a renal ultrasound and the consult with the NP. Get ready for a water works data dump (as if you didn't already know this about me!).

The renal u/s went well, nothing to report there. She was uber cooperative. Then the VCUG. They take a cath, empty her bladder completely (With a syringe drawing the urine out), then fill it with liquid that shows up black on an x-ray. As a new policy they actually fill and empty the bladder twice to check for reflux issues.Apparently the chance of finding a problem on one fill is 75% but with the second fill it jumps to 99%. Nice! So fill fill fill... HUGE bladder, she gets uncomfortable but doesn't void. (Bad sign.) Visibly very uncomfortable, no void. Finally she let's a little go (judging by the x-ray maybe 25%?) but then stopped when she was more comfortable. They poured warm water on her to get her to go, so she was laying in warm water so then she kept going and going as they were filling. But never empty...

We ran up to Urology (Dr. Pee? Ha!) And she spoke with use about everything. Starting with the good news... Dylan's kidneys are growing as she's growing. There are no signs of reflux to her kidneys at all. A smooth bladder wall indicating low pressure (sometimes when they build up pressure and don't void, the bladder wall is uneven because some of it holds pressure better than other parts). There's no scarring to her kidneys or bladder from all of these infections. No damage at all to any of it and she actually has a great working system, anatomically speaking. Yay for no damage, you can't fix kidneys, you just have to get new ones... so all in all, great right?

Now the bad news... her not voiding completely could be why she's getting these infections. This means we void for her. By cathing her. Three times a day. Big huge old bummer. Truthfully, I kind of expected cathing, I did... I mentioned it before. I think we've been lucky to have avoided it for this long. I have a tendency to look into things and dig dig dig to get all the information out there (surprise!) and I know a ton of SB kids have to be cathed and I also knew it was a potential solution to all of her bladder infections. So I wasn't surprised, but, not going to lie, I am still rather disappointed about it.

With a neurogenic bladder they don't know what's going on, but things change as the kids grow and they just try to stay on top of everything. It can be that she can't empty all the way, that her body is telling her to empty but not all pieces of the water works get the memo (causing discomfort), or if today's incident was just a one-off. we will measure the output that we get at the different times of the day and if we get less at a certain time we might be able to go to just morning and night cathing. It can also be that when she's up and about during the day there's pressure and other things going on neurologically that cause her to not be able to void just while she's awake. She has WAY full diapers over night, so maybe?

Dr. Water Works did wish we had gotten the VCMG which include a pressure catheter so they can steadily measure what kind of pressure's going on in there. They probably should have, but they didn't look at her Spina Bifida chart when they scheduled everything out and they didn't talk to a doctor about it. It's not worth doing again, at least until her SB clinic in May, but it would have been another good point of data to have handy.

She was also switched to a stronger Profolaxis that we will start when she is done with the antibiotic she's on for the current infection. Sometimes that works, sometimes they double up with the one she's currently on, and sometimes they alternate days with the two! Interesting! But for now, cathing and only one antibiotic.

Day four (tomorrow):
Thursday we go for training on how to cath her in a 'Life Skills' class through the Spina Bifida clinic. They will teach us what to do and set up supplies through the home health company. I watched a video online though and I think I am scarred for life. Really. Need. To. Wash. Eyeballs. I will get numb to this right?

Thursday is also the first day of pre-school! A little nervous about this... but we will see how things go and I will report back accordingly! I am dropping Ian off so I can take the kids in all the way for their first day. I am sure Duncan will have the time of his life, just another day on top of the rest of the funnest week of his life I guess!

Looking guilty anyone?


Ahhhh... this is why! I had to switch from over the top, to under which is not okay... but okay for now I suppose!


Brothers spinning in the egg chair! Big fun!