Monday, August 27, 2012

A Shot in the Dark but pointed in the direction of home!

We have a flight booked home tomorrow! After a MONTH AND A HALF...seriously.

And an update is long overdue. I've been meaning to add all this, but I kept waiting for more info. I'm gonna be waiting for a while though, so here goes.

We have no actual diagnosis.

The End.

Just kidding. Sort of. There IS no diagnosis. But it's not the end. Pretty much, any test result that HAS come back abnormal, no one knows how to make sense of it. And everything else is "normal". The one thing of note is that on the celiac gene test, he rates very high on the likelihood of developing celiac. Now, people can have this gene and never get it, and he's tested negative on every other celiac test out there. But because it is LITERALLY all we got, that's what we are going with. Strict gluten free diet and environment. This is tough with any kid, or anybody at all, but it's really hard with a kid who has feeding problems and textural issues. Which is why we've never done a trial of it in the past. But things are clearly bad enough that we have to embrace it. It's hard though cause he's not diagnosed with celiac disease. No one else knows this, so I could make things much easier on myself and just say: my son has celiac disease. But I don't like to make things that simple. Too weird. I like to, instead, go into a full explanation of the past four years to unsuspecting strangers who don't really care and will think twice about being nice to people in the future. I'm doing my part.

So for the past 10 days or so James has been properly gluten free. It takes time to see results, but yesterday his abdomen was noticeably less bloated and has stayed that way.

We stopped using TPN last week and that was a little rough in the weaning department. He had low blood sugars that he couldn't express and felt pretty crummy. Fortunately (I think?) he has a diabetic mother well versed in low blood sugars, so it was very easy for me to recognize and treat. His diarrhea was continuing though, so I made the executive decision to take him off the pancreatic enzymes and then text the dr later. He may still need them at some point, but I was fairly certain they were a problem. We also started giving pectin, like the stuff you use to make jam? It really helps. So weird and simple. Anyway, he is worlds better.

We did suffer setbacks in the feeding and sensory department that will need to be dealt with. He mouth seems a little dead and lazy now, and he displays a little less interest in food. But I've gone back to smaller meals and spoonable foods in between for calories. He lost weight coming off the tpn, which is completely normal but you hate to see. The thing is, we have to continue to balance physical health, mental health, and sensory therapy. We've worked really really hard on his physical health this summer, but to do any more is to risk his mental health. It is time to go home and regroup, relax, recharge. And remember some normalcy.

So it's with a slightly heavy heart I return home. My sister calls it happysad. :) We've learned a lot and ruled out a lot of scary stuff. We are stronger and more grateful but also frustrated.

When we first met with Dr Semrin in July, he listed off a few possibilities and said he didn't want to scare us. I said not to worry. Nothing was scarier than what was in our heads. He then asked what was in my head which was funny because it's a scary scary place, but also because no one else has asked me that. Which was why I froze up a little and stuttered out not the answer I meant to give, because I couldn't put it into words. I later told him:
What I'm so scared of is never finding anything out, and going through this over and over and over again until we can't help him anymore. At the time, I really never dreamed we'd be no further along 1.5 months later, aside from extra pounds due to iv nutrition. It's so hard thinking that's where we are and I feel defeated and exasperated. But also, I'm homesick and miss my husband and I KNOW that James will get better at home, eating our amazing and nourishing food and playing all over the farm!
Please keep the prayers coming. We just aren't done yet, but we will keep on keepin on!!

This one eats clams. So weird.

Helping let the chickens out with FaceTime


Attack baby

Thursday, August 16, 2012

The Old Me vs The New Me, Which Equals....

....a lot of conversations in my head.

Back in the day, in my youth (because I anticlimacticly turned 30 and also because I've aged significantly this past month, AGAIN), I rode horses, a lot. Okay, so one of our businesses is still riding horses, but I have rarely had the chance the past fours years. But anyway, I was pretty good and undoubtably could have a gotten a lot better. What I was really good at was riding querky horses. Like querky 'don't move a muscle while riding or else you will rocket into space' type of horses, not like querky 'I'm so lazy I live in my parents basement'. Those I don't tolerate so well. I loved riding racehorses and could, for the most part, sit quietly while they performed all sorts of tricks underneath me without really caring. And I especially loved riding this crazy boy here:

Case in point: I'm riding here with only 2 fingers holding my left rein, because my little finger broke on a racehorse's neck when he was goofing off. Also, this is actually a big jump. Jake just made everything look puny and unimpressive and the Leo in me just can't let that go.

Anyway, I would like to say that this ability of mine is due to raw talent or intense training or really anything other than the fact that I don't have reflexes. Seriously, when I go to the doctor and they hit my knee, nada. And if Tom tosses me the car keys, they bounce right off my forehead before I even blink. So it could look like I'm calm and collected on a wild 2 year old, but honestly it just doesn't occur to me to react or be particularly scared until a few minutes later. And later, I'll be scared and shaky. When it all hits me. I think this is why you do want me on your side in a true emergency. I will stay calm and get it all taken care of. Just don't give me too much time to think about it. I'll F it up then. Or put me on a horse you have to actively kick. I'll F it up then too. But weird random emergencies...I'm your girl.

This horse was later put down because it hurt a jockey so badly and was just that crazy and dangerous, and my guess was inbred or something. I had to hire a neighboring barn's lead pony just to get me up to the track and back. It could buck at a full gallop.

I loved teaching horses to break from the gates. Another good time to not move a whole bunch.

Okay, so I now find myself a parent (so weird) and so many circumstances are completely and frustratingly out of my control. That laid back and non-reactive nature has been pushed to the limit. To combat it, this crazy, scheduled organizer has entered my personality. Now, that could be good, except it's an unpracticed, crazy, scheduled organizer that's invaded. That's just stressful. Fortunately, on top of all these stellar qualities, I also internalize with the best of them, so I think my children are thus far unscathed. Tom will never be the same. Lucky man.

Somehow, at least in my head, this relates to a fun day we had this week. Tom, Eve, James, and I went down to Fort Worth to visit an old friend of mine I'd always stayed in touch with but hadn't actually seen in around 10 years. We've tried to meet up in the past couple years, but each time James has gotten sick ad we couldn't travel. We were supposed to head up for a visit the day after we were admitted to the hospital this time. On a fun...ish twist of fate, Sean had a show down here and we were stiiiiillll heeeerrreee.
I was all worried about too much heat for James, not only because of sweat and the PICC line and all, but also because he typically gets either hot or cold really quickly or hungry and wont eat or has to go to the bathroom but wont or something and then the whole outing that was supposed to be fun just sucks and then I never want to leave the house ever ever again. That sounds super selfish but really it's the whole family and big picture and just reality.
I had this little trip planned with what time we'd get there and what time we'd leave so we could get James back in time to hook up to tpn at a certain time so that I could unhook him at a certain time in the morning, blah blah blah. But we get there and Sean's phone had run out of batteries so we had no clue where he was on an 85 acre show ground and James was asleep in the car and Eve WASN'T! After walking around we stumbled across Sean and the fact that the whole frigging place was air conditioned. Then I realized I'd been riding in the wrong horse sports my entire life. THEN I realized that you can't cut a visit short after 10 years, especially when the story telling is just getting good. So we stayed hours after I had planned and came home and everything was fine.
That almost sounds like a dumb story that wasn't really a story until you read: everything was fine. It was Tom who pointed it out when he said, "wow, that was really fun and nothing bad happened."
It's hard because it's a false sense of security with the tpn, but we are catching glimpses of a more normal life and, most importantly, glimpses of who our son really is and wants to be. The next step is how to keep him.

I never imagined Sean holding any baby, let alone my SECOND baby, let alone having his OWN baby. I feel so grown up.

Thursday, August 9, 2012

Home away from home

I actually had a big ol thought provoking post written out yesterday, but when I went to stick a video on it, the whole thing crashed and disappeared. Sooooo, that was about the extent of my motivation. Instead I'll paraphrase and pop up some functional pics and videos because a picture is indeed worth just about a thousand words. :)
We are at my parents and while it is not home, it's a far sight better than the hospital! After the first night when our TPN supplies arrived with NO INSTRUCTIONS WHATSOEVER!!!, I think I've got it down. It's nerve wracking to have to inject all the additives to the bag, spike the bag, hook it all up, keep everything sterile, not send anyone into cardiac arrest and whatnot. I may not be the smartest person in the world, but I'm definitely not the dumbest. And presumably they send all kinda of people home with this stuff. It's a sort of comfort...hmmm.
Anyway, we meet with GI next Thursday and, again, presumably they will have the final test results and, hopefully, some sort of direction. Please pray for an answer! A treatable and/or curable answer if we are allowed to be picky.

Here's what we've been up to!

Facetiming with Daddy. We miss him so much!


YouTube Video

As usual, there are no words. Who's daughter is she???

YouTube Video

Sweetest boy. Kids are amazing.

Medical takeover of my poor mom's pantry

Sunday, August 5, 2012

The Loooooooongest Weekend

Weekends haven't ever really been the same to me as to most other people. They are typically the most busy in the horse world, with either competitions or clients off their regular jobs and wanting to ride. Mondays are our days.
In keeping with that theme, this weekend has been fairly torturous. We really are just here while they perfect the TPN levels and make sure we are good to go home on Monday. I've been training up on the TPN and PICC line and continue to feel pretty good about it. Another thing the horse world has prepared me for! But otherwise, it's given me and James a lot of time to think about how we'd rather not be here. He's actually burst into tears a couple of times asking to go home. And hopefully nothing gets in the way of tomorrow!! I haven't packed and wouldn't let my mom take anything back to her place. Bad juju and all.
But I have been thinking a lot of those families who don't get to go home. Because as much as sometimes an episode like this can strengthen your faith in God, I can't help but think about the other families who pray just as hard as I do, who are far better people than I am, and their child doesn't walk out that door with them. It's hard to stay blindly positive when some kids recover and some don't and you can't see the rhyme or reason to it. We leave tomorrow (theoretically) but we leave with a catheter to James' heart just so he can absorb nutrients and grow. Where do we go from there? And how long can we hang on until they can figure it out? And if they do figure it out, will there be treatment, or is this it? Not trying to have morbid thoughts, but this is my reality right now and it's scary. I have this extremely vital, energetic, brilliant little boy and he can't sustain himself using one of life's most basic functions. It's staggering to think that not that long ago, we wouldn't have made it even this far. And while I believe in my heart of hearts that he's going to be okay and they are going to figure this out, I also can't help but think that everyone thinks that way and it just doesn't always happen. I don't care if it's now or ten years from now. Or 20. I just don't want a limit like that.
Leading to a lot of these thoughts is that when you live in any hospital, but especially a children's hospital, for any length of time, it's like prison torture. Bright lights, beeping, freezing cold, no one let's you sleep, crappy food, zero privacy, and you hear children screaming All. The. Time.
I'm about done with that. And I feel like it was about 3 weeks into the UVA visit (we will have been here 3 weeks tomorrow) that I had a similar breakdown where I just couldn't stand the crying kids anymore. It's heart wrenching to hear the pain or the fear. I think the fear is the worst and it's so evident.
Our bright note here is a little girl we met who has been here 8 weeks. She got an infection from a stomach surgery and all kinds of complications, and Monday she will have been here 2 months with her mom, while her dad and 2 sisters are home. I LOVE this little girl. I know she's going to be just fine because her spirit surpasses anyone's I've ever met. She hasn't been allowed to eat in over a month, and will hopefully get to try this week. She wants lasagna and if I didn't think it would make her sick I'd go right home and make her one. She reminds me SO much of little Paris, our friend from UVA who didn't make it, and if Tina is reading this, you'll know just what I mean. If Paris got to be 4 years old, and somehow became Pakistani, this would be her. And it gives me some comfort. So please keep this little girl and her sweet mom in your prayers as well.

The other bright spots in my day follows:

Thanks all!

Thursday, August 2, 2012

A plan!! (but don't get too excited)

Well we have a plan! It's not the most inspired or even fully informed plan in the world, but it's the first dang plan we've had. Today James started taking pancreatic enzymes and we will see if it helps. I have started PICC line training which is a little scary to take over full responsibility, but there's lots of nursing help. We plan to go home Monday or Tuesday with the tpn and that's kind of where the plan ends. It's actually a pretty sorry plan.

Anyway, it's all we got. We will follow up after that outpatient and keep 'chipping away at it' as Dr Anderson said. Lovely.

James is happy but missing his sister and daddy. As do I!!

I celebrated my 30th birthday here the other day. Not what I would choose, but my whole family came with amazing Mexican food and a cake for a party in the cafeteria. I ended up missing the entire thing because that's when all the doctors that we had waited all day to speak to finally showed up. But I do think James had an awesome time with his cousins and likely thought it was sort of his birthday too. He asked for an airplane. The following morning Tom flew back to VA again. So I'm totally claiming a do-over. When this is

So while there's still so much we don't know, and some things we suspect but aren't jumping on til there's confirmation, we did finally get confirmation that he is not absorbing all of his food. Two years ago he seemed to gain weight according to how much he ate, which wasn't much. He gained awesome weight on TPN then and now. After he started eating again here, his TPN was decreased to about 50% of his needed calories because he was eating 85% of his total needed calories orally. Initially I was upset they decreased his TPN because he stopped gaining weight and I figured it was because he wasn't eating as much as normal. But then what we realized was he was getting a lot of calories, so he certainly should have been gaining weight. This proves that he is not properly absorbing through the gut! And then this leads to the pancreatic enzymes and on down the line of stuff we don't know yet.

Finally, information is coming in, it's just that so far no one really knows how to put it all together.

Please keep the prayers coming!!

Playing with plants outside.

Eve hugging Daddy in her bday dress!

A real pickle.