Tiny update

Lillian has had a rough few days this week.  She has had a stomach bug of sorts, I think.  We pulled an all nighter Wednesday thru Thursday with a solid 3 hours of vomiting and her crying out in pain.  By 0330 I had started to dress because she rarely complains of pain and the screaming just about had me undone.  I can never just assume we have a stomach bug.  It was a rough, I mean rough night into 0730 that morning when she started another episode.  She seems fine today, but I'm really not certain that this wasn't a flare.  She had a vomiting episode Tuesday evening and was fine all through the day Wednesday.  

Matt had a follow up with the surgeon today and the NP is pleased with his progress.  He will go back in two weeks to follow up with the actual surgeon.  

Urology update

 I've been up since five.  Can't find rest to relax and try to sleep again as my mind swirls around yesterdays visit.  Wasn't a *bad* visit, but again, not something I was expecting.  I'm struggling to know if I should just "unleash" my thoughts or keep it straight to the point.  UGH...the more I type, the more I feel conflicted. Here we go:

She had an ultrasound at 1230.  Her appt with her NP wasn't until 2:30, because why would we want to schedule them back to back...that would be too easy, am I right?  I digress,  we get there and by the time they get to the bladder portion of the ultrasound, Lillian is about to rupture and the tech says, oh my, if you are ever that full, please say something, I'll do the bladder first so she's not miserable.  Now, in 12+ years, no tech has ever, EVER said that.  We have even rolled in there and said, she HAS to go and they pretty much ignore me.  Anyway,  we muddle our way through this area of KY, and find a place to eat. My mom graciously treats us to Olive Garden, one of Lillian's favorite places.  They literally bring me a bowl of chicken and gnocchi soup with no chicken and no gnocchi, seriously.  That was easily taken care of, but funny nonetheless.  Before we leave the restaurant, we always do a potty break, head back to the hospital for her appointment.  The NP comes in, there is sediment in her bladder can we give them a urine specimen.....this could mean a number of things, does she have a UTI, could this be from holding your urine for a long period of time.  Are you adding this up yet?  So, we head to the bathroom for a clean catch sample and me bent over being assaulted by the deadly gas my child has, holding the tiniest specimen cup, Lillian is only to give a couple drops, which is only enough for a dip specimen.  Not a culture.  Can I get her in to the pediatrician tomorrow to drop off a sample?  At my suggestion, their office makes the call to the pediatrician and gets us an appointment, about this time I get a seymour phone number coming up on my phone.  I answer, it's the school nurse, Ezekiel appears to be having a little RAD event and the nurse is very concerned.  I'm, literally talking to the school nurse and the NP in the dr office at the same time.  Such chaos.  I finish the phone call, feeling stretched.  At this point the NP starts asking me if we've seen Nephrology before, I say no. She says are you sure, I thought we sent her before.   I say, no.  She peruses the computer to make sure I'm right and suggests that due to some of the things showing up in her urine consistently, she'd like her to be seen by Nephrology.  It is at this time, that my own internal dialogue has started.  I'm thinking a multitude of thing, mostly along the lines of "she's got to be kidding me right now".  Many, many thoughts racing through my mind.  She stops abruptly, looks at me, and says why are you looking at me like I grew three heads?   I giggled off and on all the way home. Clearly, I have no poker face.  Eventually, after some questions I tell her I'd love to add another doctor to our list.  Mind you, she doesn't *think* she has the specific disease she suspects, but she wants them to have a look and make sure. By the way, did I mention they scheduled the "pee" appointment for the same time my husband has to be at therapy in our town?  (it's been worked out *deep breaths*)

We get out to the car, I call the pediatrician and explain what has happened with E and can he been seen when I bring in Lillian and her response is, they can't give me an appointment this day, I will have to call in at 8 in the am and sit on hold for a sick appointment.  ??????????

SO, this is where I end this blog.  I think that's all I need to share at the moment.  My emotions are running high, so I will stop here. Thanks for hanging in if you're still reading this book of a post.  

Final final blood "disorder" results and other stuff

 The hematology team has made the decision that Lillian does not suffer from any bleeding disorders.  All of the tests they have in their abilities at this time indicate she does not.  They are going to make her diagnosis bleeding tendency and see her yearly.  They will also be updated for any surgical procedures so they can order medications to slow bleeding if need be preop.  So, praise be to Jesus.  It does test my thinking though, in a way, they kept doing the same tests over and over until one was normal.  Of course, I'm no doctor, but how can a test be abnormal multiple times and then be normal?  Oh well.  Again, I'm no physician.  We have follow up with her Urologist on Thursday.  That will be a long day in KY.  

Matt update: he is doing well at home.  Thank the Lord he is finally home.  We are rolling into a week of dr follow ups and continued physical therapy.  Cardiac rehab should start in another week or so.  He is easily exhausted.  I am so, SO grateful things are going as they should.  Lillian and Ezekiel seem to be hanging on some viral bug and I feel like we are living in a petri dish.  It seems as all my fatigue is catching up to me and I'm tired.  

Keep praying for healing.  I am so grateful for our friends and family who are rallying around us.  There will never be enough words.