Saturday, July 28, 2012

Time flies...or something like that

Wanted to give small update. There's not much to tell, which is astounding. Almost all tests have come back and they are all negative. On Friday, which was the last day for the doc who's been on our case since Sunday, I could tell how frustrated he was. Which is nothing along the lines of how frustrated I was!
We knew this could happen, but what I didn't want was for anyone to give up. Though I suppose it's kind of hard not to when you aren't on the rotation anymore. Dr Kooros's plan was to treat bacterial overgrowth AGAIN very aggressively for a month, do a strict lactose free diet, then probiotics.
So a couple things happened after this was thrown out there as a possibility. First, I started thinking, which is always scary. In a hospital, it also usually means you get pissed off. Well, for me anyway. But they were giving him Flagyl for overgrowth, which is the world's most disgusting medicine. He has to have it 3 times a day for a month. After the second dose, he was crying. And I basically said there's no way this is going to work. I asked for alternatives, possibly IV at least while he has PICC line, but pretty much everyone had gone home, so I got some mean chick who came in and rudely told me they weren't going to give him the antibiotics IV. He had to take them orally because he's going to go home and he'll need them orally. The way she said all this...well, I was pretty close to bitch slapping. I'm not terribly mature anyway and the more time spent in a hospital, the less tolerance you have and the way less you care what others think. I think it has something to do with meeting doctors all day in your pjs. It's just weird. At least I have my diamonds.

Anyway, long story a little less long, I told her that was not a good enough reason and she could go back and ask for a real reason before I'd accept it. But I had no hope of that, and in fact, I never saw her again. In the meantime I emailed Dr Borowitz's nurse after hours asking if they had ideas. She actually emailed me back almost immediately that they had a mom once take the pill instead of the liquid, cut it into chunks, and mix it with jam. Slid right down. So I tried it with banana chunks, and while he says it's stinky banana, he does just fine with it and it's about as painless as it gets! He may end up with a distaste for banana someday, but then we'd be on the same page, so that's okay by me.

Today brought the return of the original GI doc we saw here. Until he came in, I was ready to play along with everyone here, let him gain weight, and then just move on to the next place. But he stepped up. He set a plan in place immediately to get renal, genetics, endocrine, and metabolic specialists involved since GI has pretty much been exhausted, within an hour we had already had a kidney ultrasound and more urine testing done, all of which was normal but needed to be done as a baseline. We probably won't see those specialists til Monday, and they will decide what other blood tests can be done, which is no big deal because they draw the blood from the PICC. Also, Dr Semrin has no problems with us going home using the TPN if necessary, just so we can get ahead of the game. But we will stay and get this further testing done while here cause it just makes sense. Also, it takes a little time to concentrate the TPN to just overnight for us to go home, if that's what needs to be done.
Then if ALL this shows nothing, he will gather results and start sending them out to other doctors around the country, which is the other thing I REALLY wanted to hear. So I'm encouraged that not everyone has given up and there is a doctor showing marked interest in the case. For now, we'll stick with him, unless he pisses us off too. ;)

Here are a few pics of the walloping good time we are having:

Cousin visits bring out the best in everyone!

Wild and goofy.

Um...wild and goofy.

I just want this so badly. Right next to me, right now.

Wednesday, July 25, 2012

Disclaimer: supposed to be funny, not sad, at least not in a crying sort of way...

Traveling to Texas is always so easy. My parents have a pack n play, high chair, obviously laundry, an extra vehicle, convenient access to grocery stores. It's astounding to me, mostly the grocery store thing. Anyway, I don't bring much with me. I bring way more outfits for Eve. But I want to explain how that planning has unintended consequences.

Before we left I had gone to Old Navy for new pjs for Eve. I got a bunch of shirts for myself. Pretty much short sleeve and 3/4 sleeve henleys in various colors. They were all clean, so I grabbed a couple of them and threw them in a suitcase with 2 pairs of jeans. Unintended consequence: I look like a brightly colored Old Navy ad wherever I go, every day.

We had 2 dressy functions to go to while here, neither of which we attended. I brought two pairs of fabulous heels to go with my dresses. Add my ever present cowboy boots, and I only had room for flip flops. Unintended consequence: I'm wearing flip flops in a hospital. Every day. It makes me itch just to think about it.

I brought one pair of socks for James to wear at the airport, and sandals for the rest of the time. It's 100 degrees here every day. However, not in the hospital. Unintended consequence: Aunt GG had to make a Target run.

I brought no socks for Eve. She never wears shoes or socks. We are rednecks. But we are rednecks who don't want staph infections or really to touch anything where there are warning signs about bodily fluids. Unintended consequence: when she comes to visit, she wears James's socks. They never match.

I had a facial from Robyn at Pure Skin Therapy about 2 hours before we ended up here. They are incredible, and anyone near Dallas who wants to know THE place to go, I'll pass on her info. Anyone who has had a really proper facial knows that really you don't look good until about 2 days later. Splotchy. Add crying. Bad news. Unintended consequence: I looked like crap coming in here, now I've been living here, now I need another friggin facial. (On a positive, I did get a supply of her face care products, and again, I have to plug these. Amazing amazing amazing...and keeping me sane.)

I usually travel only with the jewelry I'm wearing. My husband spoils me. I got a diamond when we got engaged (duh), diamond studs the day we got married, a diamond pendant necklace when James was born, and diamonds added to my wedding rings when Eve was born. Unintended (ok, maybe a little intended) consequence: I'm running around in nasty flip flops, weirdly similar daily Old Navy outfits, and I'm dripping with diamonds.

It's how I roll.

- Posted using BlogPress from my iPad

Somehow it's Wednesday....

Today has definitely been one of our best days here at Children's. That's in relative terms, obviously. But James has perked considerably and while not eating a ton, is doing worlds better.

Eve came and had breakfast with us this morning!

So happy to pet his sister. :)

Trying to be as normal as, whatever.

So that's today. Here's the recap since Sunday:

Sunday continued to suck just a lot. That trickled into Monday which definitely sucked more. He went in for the procedures at around 1 and was done around 3ish. Took a little longer than we thought, so I was nervous. What happened is that they have to put air into the intestinal tract during scoping so they can see. Sometimes due to either inflammation or anesthesia, the air gets stuck. The danger here is that everything gets distended, the intestinal walls are thinner, and you risk perforation. So Dr Kooros tried suctioning and doing all sorts of things, but the decision was made to not continue with the colonoscopy. By this time the endoscopy was done and the PICC line was placed. So Tom and I go into a consult room while James was being extubated (there's a word you just never want to hear about your child, FYI) and they start explaining everything that happened, but that he was fine. However, an NG (nasal gastric tube--down nose into stomach) tube had to be placed to allow air to escape until gut started to move. I think Tom's initial reaction to that was absolutely devastated, as those things are complete torture for anyone, let alone someone with an oral aversion and SPD. I got to devastated over the next 19 hours of misery, but initially I was so relieved he was okay. I was seriously scared about him having all this done. Risk of complications are so much higher when you are dealing with malnutrition and I was just terrified. So when the doctors walked in talking about complications, I've never been so afraid. At that point, the NG was just not the worst thing in the world. But, tell that to James. It was awful. Same as two years ago, he basically did not speak or make eye contact until noon the next day when it came out. We spent hours just reading books and trying to make him comfortable, but there just wasn't anything we could do. When it finally came out, we headed to the lab for a sweat test for cystic fibrosis. He has had this done before, but they wanted a repeat test with their more sophisticated equipment and lab. Apparently CF can present only with GI issues in rare cases. The last time he had this done it was basically a piece of plastic taped to his arm with a sponge in it that collects sweat. Then you wait til there's enough sweat. So I'd been telling him all morning we were just going to get a sticker. Well shit if they didn't hook his inner arms up to these medieval electrodes to stimulate the sweat and then wrap him in plastic. On both arms. I think it hurt like a bitch. I felt terrible, cause Lord knows this kid remembers EVERYTHING that is said. Terrifying prospect for our future. Anyway, he came back and slept after some playtime and had a little dinner and slept pretty well overnight. Tom flew back to VA this morning which, um, sucks (theme?), but James woke up a new man! He was hungry and talkative and goofy and his color is 1000 times better. We had to change the dressing on his PICC line, which is the equivalent of cutting off puppies' tails, but otherwise the day was trauma free. We also got moved again to the real GI floor, as they were cleaning up after construction. Bigger room, bigger window, flat screen, play room, and a lovely view of my parents condo building. So close, yet so far away!

So here is what we know so far:

He definitely does not have CF, thank God (it's true we really want a diagnosis, but that's one we really didn't want).
He definitely does have visible and significant inflammation of the small bowel.
Preliminary tests are inconclusive, which we sort of knew they would be, though there is no particular evidence of Crohns, which is good too cause that disease no bueno.
I do not look pretty without makeup.
My husband is a saint. Not a patient one, but a saint nonetheless.

Waiting on the more detailed and specialized biopsy results and some more extensive celiac testing as well. We will hopefully have a plan by the end of this week. My goal is to at least know what's going on by my birthday next week.

One more thing to add to 'things we know':
My goals don't mean a whole lot to these people.

Over and out.

Sunday, July 22, 2012

Making the best of things

Two years ago when we were at UVA for oh so long, we learned a lot. We'd already been to different teaching hospitals, but we became practiced at how everything has to go through different channels, who is who, who to talk to, when to go over someone's head, when to flip out, and also when to accept you're there for the foreseeable future and it may as well not suck the whole time. For instance, you don't have to eat their food. In Virginia, we had Whole Foods and a bunch of great local restaurants. Here we have Eatzies and Nonna's refrigerator...and Poppa's Chardonnay. Vital things. We also learned when to have people visit and when to say no. Most of the time, visits are always good. Because we don't tend to associate with people we wouldn't want to have visit. :). Anyway, we are trying very hard to make this visit as possible. With my family around, this isn't too hard. Someone is always around to visit, spell us, send videos, or do something wildly inappropriate. These distractions are good for everyone.

Starting at noon yesterday, James hasn't been allowed anything to eat or drink. Then when 24 or so hours pass, they will start him on the nasty cleanse drink to potentially have a PICC line placed, and an endoscopy and colonoscopy on Monday. If not Monday, then Tuesday depending on some test results. Please please pray for Monday. We really want to get this all over with as soon as possible. These next few days are just awful, but we are trying to do everything right so we can get every result possible and done correctly. Obviously the big hope is that they find something treatable and then we go from there. It's hard on every parent to withhold food and drink from a child that doesn't understand why, but I just have to say, this is SO hard for parents who jump to give their kid food if they're hungry. Shoot, just to hear him say he's hungry and wants pancakes is usually the best part of my day. So giving him a wet towel to suck on basically sucks wet towels. He's now napping and I hope he sleeps for hours. It all just goes faster that way. Probably I will post again after things settle down tomorrow. Tom will stay a few extra days til we are over this hump. I know he doesn't want to leave any more than I want him to! Today he got away from the hospital for a few hours and I hope he can let down his guard a bit. He's been everyone's rock the past week and we need him to stay that way and not crack!! :)

Here are a few cute pics we've taken while trying to pretend things are normal!

So happy to see his sister!

A little FaceTime when we can't all be where we want to be, which is together! I have to say, the boys are lookin a little rougher than the girls, until....

Eve covered in yogurt. Covered.

Disclaimer: Whitney, you'll probably cry. This is a view from my parent's. That big ray shining down from the sun is pointed directly on Children's Hospital. It's gotta be a good sign, right?!

Friday, July 20, 2012


The added element of this particular hospital stay is Miss Eve. Fortunately we have this amazing backup team of my family, but we still have to, you know, be parents. It's hard. Sophie's choice, as Tom says. Mainly, Tom stays nights with James and I stay nights with Eve, cause that's a little nicer to all involved. But it's hard. I'm used to being with them both all the time, and if I'm going to have to be away from my children, I want to be in Italy or the Caribbean with Tom with no worries. This sucks. Prior to this, I've never been away from Eve for more than a few hours and James for a night here and there, including when Eve was born. With James'...stuff, and living away from family, that is just our reality. And let's face it, I put our kids to bed at 7pm every night no matter what. So we make it work. Sometimes I tell James it's bedtime and it's only 6:30. That's just healthy. Anyway, no matter how you spin it, it's torture. And it's about to get worse. Tom will need to head home Monday to, you know, go to work. He'll fly back in a week or so for a few days, hopefully for my birthday. We have no idea what is in store at this point. We don't really want to be discharged until the diagnostics are done, because to do an endoscopy, for instance, outpatient, just seems inefficient and traumatic. We are in the hospital with an IV in and he's oddly comfortable. Might as well git r done. But before any of that can even happen, we have to continue to get current lab results and former. It is 2012. This just shouldn't be that hard. I mean, I have Genius Scan on my phone. I can scan in 20 pages in a few minutes and email them to anyone. But no. Hospitals still fax. It is for security. Never mind that a paper fax can be read by any A-hole who walks by, while an email can be encrypted. Coupled with the fact that I give a rat's ass who reads any of our medical records means the patience level is at an all time low. I have been calling all of Virginia tracking down records departments and reading the riot act to get everything here as quickly as possible. I even had a friend FedEx my copy of records from our house as a backup measure because each hospital and doctor's office, aside from UVA was being so slow. I am so sad to say that those records arrived before any others. A big thing we have been waiting on are the physical slides from the original endoscopy done when James was 7 months old. Pathology will look at these to determine was precisely was done, how well it was done, and what or if anything needs to be done again. Big deal. And Friday is now over. We were told yesterday that these would be mailed today; they (Dallas Children's) were waiting on something from their department. Live and learn, I didn't ask what. Just assumed it was vital. Today we found out that they couldn't find out their FedEx number. Tom and I both just about lost it. Actually, Tom completely lost it. You see, we own 2 businesses. And my dad has a business. We have FedEx numbers out the ying yang. And since we told them we would have records FedExed, they knew this. So leaving aside how absolutely ridiculous it is that in an entire, enormous, Dallas hospital, no one knew the FedEx number, we still could have gotten this done. Shoot, even if we didn't, we would have gone online and registered for a frigging FedEx number and gotten it done. Anyway, I was with Eve, so it fell on Tom to call the doctors out of a meeting, inform them this was running more inefficiently than the government (I'm sure that went over well), give them our FedEx number, and tell them to overnight the slides immediately. It's hard to even know how to respond to all that, but as they weren't aware of my scathing texts to Tom during those moments, for some reason they think I'm nicer. Funny. They'll learn. All that aside, sort of, James is doing better. His appetite is returning slowly, his poops are still super weird but not as traumatic, and he has not thrown up at all. He is still dehydrated, which is telling, and we are still waiting on other test results to come back. He is in really good humor as long as no one messes with him, just like his daddy. All the children within the hospital are amazing. You can tell the long termers versus the short termers. That's sad and kind of cute at the same time. And as parents, there should be ID for either one. Cause it really does make a difference on how you operate. We've just been in survival mode lately, and I, for one, have sort of been ignoring the fact that we are not in Virginia, we do own 2 businesses, and at some point, Tom will have to go home to operate them. That point is Monday. I'm terrified. I'm so sad to leave Eve who clings to me when I see her and I never want to be from James ever. It all really hit me today as I was leaving the hospital, and as I fully believe in crying privately in a bathroom or elevator, I looked a little tear stained driving back to take care of Eve. Some dude with no teeth in a truck pulled up next to me on Medical Center Drive and asked why I was sad. I was feeling pretty bitchy at this point so I said I was tired as my son was in the hospital. He asked his name and I said James. He said, "well I'll take his name and we'll all be praying for him at the Salvation Army." That's when I looked at his truck: a white Salvation Army vehicle. I was instantly humbled, thanked him profusely, rolled up my window, and cried the rest of the way home. I was reminded that we are not alone in this at all. There are bigger struggles out there and we are more fortunate than most. Way more. And I don't know what is going to happen, but someday, it is going to be okay, and so will we. FaceTime!! My girl, growing up, and playing with a urine specimen cup. Don't worry. It's unused. So it's completely sterile. Crawls into my lap every chance she gets!

Thursday, July 19, 2012

Well sh*t

Hello there. Day four at Dallas Children's Hospital. I have had all these blog posts in my head for a while now, in varying degrees of positivity. They start with the end of the year SMILE party that I have all sorts of adorable videos of James. He surpassed all our expectations, performing motions to a song, going through the obstacle course, speaking clearly into a microphone. It was awesome. Then playing at a bounce place and having the strength and confidence to climb and do the slides all by himself. It was fantastic. Then the shit started to hit the fan. So I guess the positivity isn't in varying degrees, it's just diminishing with time.

I'm trying to think back to precisely how we ended up here, but basically the same thing started happening that's happened too many times in the past. He started not looking so great, then not eating and drinking so great, and once he gets slightly behind, we just can't catch up. Still, things were okay. Eve had a great first birthday and James had a great fourth birthday with almost all our family here. And Tom surprised me with an amazing EARLY (very important to point this out) birthday dinner with family and friends. But through all this fun, at the back of our minds we knew we were going down a bad road and were trying to figure out the next step. Our minds were heading more towards intensive feeding therapy is summer, and we found a highly recommended center in Colorado. We may still go there, but we also decided to visit Jenny when we were in Texas this week and see her thoughts. So helpful as always, what really clicked during our discussion is that no one has ever diagnosed his underlying GI problems. I mean, duh, we know that, but I think all the SPD has taken the spotlight from the medical issues. And right now, therapy is beating out medicine. And we, of course, have made sure to point that out while here.

Competition is healthy.

So while in Dallas on this 'vacation', we thought we'd see if any doctors here would be interested in the case. Or we'd go to Boston, or Cincinnati, or somewhere with a fresh look and in dream land, somewhere where they had just cured a case exactly like James!

We didn't plan to enter through the ER, but in a way it's good because we may have had to wait a while for an appointment with all these doctors. He came in dehydrated as usual (how sad is that), but we are learning so he wasn't nearly as bad off as he has been in the past. He may have some sort of virus causing diarrhea or there's something else. But there is an acute problem happening right now that needs to be fixed before further diagnostics, and we will stay here until that problem is solved. We will then stay in Dallas until the bigger picture is determined, or they send us somewhere else. Sadly, that's all we really know right now. He's a total trooper and in good spirits, and starting to regain his appetite a little at a time. Yesterday he had a more extensive barium swallow upper GI study than he has had in the past along with an X-ray to determine growth abnormalities. All was normal which is kinda good and kinda bad, if you know what I mean. We got to have a great meeting with the lead doctors on the case in a conference room without James there to listen and worry. We had great babysitters.

Don't worry. My sister actually took this picture. Like I would ever let this happen. :)

Anyway, opening the lines of communication was good and we discussed just about everything. They realize this ain't our first goat rodeo, sadly. So far we are a big fan of their enthusiasm and they finally understand why we told them we would not leave if discharged. Weirdos. I think everyone is on the same team, and they've been speaking to GI at UVA which is wonderful so everyone can cooperate.

Eve has been a star of course. Thank God we were in Dallas. Sometimes she can't quite tell Grace and I apart, and she loves Nonna and Poppa so she's pretty happy. More than that really, she's doted on. And after the first night of misery, I got to spend evenings with her!

The plus of being at Children's Hospital is all the toys and amazing choo choos. And friends of the family working all around, and while I had never met many of them, just the fact that they know my family, or their kids play with my nephews, makes me want to hug them. It could be awkward, but I don't let that bring me down.

Here's the boy givin some smolder at the huge train set, totally rockin the IV like a champ. I'm usually pretty strong when James has stuff done to him, and I admit I tend to think ill of people who can't support their kids without falling apart at least in front of them. But man getting this IV was hard. Coupled with the fact that I was still reeling that we were back in this position AGAIN was a bit much. I held myself back to just eyes welling for most of the night, but when 4 people were holding a panicked and screaming child, and I was counting to try to calm him down, I could get past 31. A friend of a friend of my sister's was there with us, and bless her heart she just jumped in on 32. By 48 I was back until I could get to a bathroom to cry like a normal person.

Blurry but still a big smile!

Every picture anyone has sent me of Eve looks fairly similar to this one. She's embracing life at Nonna's.

I will keep posting things as I know them. As our ER nurse said: no one should spend four years of their life this way (which was very sweet but made me promptly burst into tears).