Thursday, November 23, 2006

Happy thanksgiving!

Well, we made it down to Florida after all, and will be celebrating Thanksgiving with Jason's family today. Tomorrow we are looking forward to a trip to Disneyworld with Katie.

Healthwise, both kids are doing well this week. Katie came down with a nasty cold and fever last Friday when she came home from school, so I rushed her over to the doctor to get her checked for strep, since it was going around preschool. The test was negative, so we decided to bring her down after all. She's finally acting like she feels a bit better today.

Sadie is doing great this week. She's had very few crying spells at all, and is down to 1 dose of the methadone a day. Next week she'll be done with it for good, I hope.

Next week brings about new rounds of doctors visits - Katie has a sonagram and UGI scheduled to check out her GI problems, and Sadie has another round of shots (including synagis) and a checkup with her cardiologist. It was nice to be away this week so that we COULDN'T go to a doctor's office. It was our first week since we've been home!

Happy thanksgiving!

Wednesday, November 15, 2006

Update of Photos

Our Halloween puppy. I actually sewed together her costume. I haven't sewed in more than a decade, so I was thrilled that I figured out how to do something with the machine.

See - she is happy once in a while!

After her hair gets wet it gets all curly, but it dries stick straight, sticking up all over. You can tell her scars are healing really well in this picture!

My girls. :)

Sorry, this one is sideways. This was taken almost a month ago. I can't believe how time flies.

A quick update

Sadie's Prilosec is helping a lot. She's still crying a ton, but isn't spitting up so much, and is eating like a champ again. I think she gained a pound this week - it sure feels like it.

I can't believe it - we're all the way to Wednesday this week without a dr's visit (knocking on wood as I write the next sentance...). I think we're going to make it all week without stepping foot in a dr's office. This will be the first time in... well, I don't know how long. Since we've been home. Yay. Even though she cries so much, this week has felt a lot better to me. I'm beginning to be able to tune out the crying a bit, and learning to cope better. I'm getting out more, and just try to stick to stores that it doesn't matter if she cries in (e.g. Walmart). Just getting out of the house helps both Katie and I, I think. Katie seems a lot happier this week too. I've been so worried about how grown up acting and sad she's been the last month. I know it's normal and expected in our circumstances, but I miss my bubbly little girl. It was good to see her smiling and laughing more this week. Even her teacher and parents at the preschool noticed that she seems happier.

So the new drama in our family is that Jason's brother just got admitted to the hospital tonight with a new blockage in his GI system. He's been battling colon cancer for a couple of years now, and just finished up chemo. The only choice they have to fix this problem is to operate again. So please keep him in your thoughts/prayers. He's a horrible patient, so keep his nurses in there, too. Anyway, Jas is pretty upset. He as telling me tonight that he feels like everything in he's being hit by so many fronts he just doesn't know what to do. I can relate to that, but I think he's had all he can stand.

We had hoped to go to Florida next week to visit his parents and hit Disneyworld with Katie, but the plans have to be scrapped due to the latest developments with his brother. Not to mention that my sister's boyfriend's mom passed away yesterday, and she's pretty upset. So I need to be here for her, too. The memorial service is this weekend.

It's all good, though. I was dreading the 14 hour trip each way with Sadie. Maybe in January we can try to get down there. I just hate to disappoint Katie - again. She was really excited about it the last two days. Maybe she'll forget? (wishful thinking...)

Friday, November 10, 2006

Good report from GI and Ped Drs

I only have a brief second but wanted to update. Sadie had her GI appt yesterday and not much came of it. The GI dr seems to think that the methadone/long-term use of narcotics is what is affecting the slow motility in her lower esophagus. She's not going to do anything further until Sadie is off the methadone for good. If we don't see signs of improvement once she's weaned again, then she suggested seeing a neurologist combined with a something-scopy (sorry, I forget the name) that is basically a camera down her esophagus. But I"m not going to worry about it for now. For the time being, she's on Pepcid to help with the reflux, and she says we should see some improvement in a few days.

Meanwhile, we're down to two doses a day on the methadone, so I've got a very cranky girl again.

Today was her 2 month check-up, and she's 10 lbs 5 ozs, putting her in the 50th percentile for weight. She's in the 25th percentile for length and head circumference.

That's the update. She's crying a lot tonight - probably from the 4 shots, so no more time to write.

Monday, November 06, 2006

Under Pressure...

My friend Cristen has this thing where she'll ask you what song describes how/where you are in life at the moment. Bowie/Queen's "Under Pressure" about sums it up for me. I guess all the stress of the past two months is just coming down hard - combine it with all the new stress of the past couple of weeks and I'm about to blow a gasket. I've been pretty calm and collected through all of this, but in the past weekend I've hit a wall.

So here's the skinny on why I'm losing my mind at the present moment. On Friday I never got a call from the pediatrician regarding Sadie's need to see a GI. I left a message Saturday. I called again today, and was told that they contacted Dr. Kessler, who's supposed to be the best in the Richmond area for infant gastrointestinal stuff. Dr. Kessler didn't have a free spot until February, but said he'd review her test results, and if it was necessary, would clear a spot in his schedule sooner. So I got a call this afternoon that she has an appointment this Thursday. That must mean that it's important. Crap.

Katie stayed home from school sick today. Her stomach is hurting pretty bad. She's on major laxatives, and has no control. All day yesterday I was running between Sadie and Katie changing poopy pants. Today the fun continued, although Sadie's not as bad as Katie today. At least mom was here to help wipe poop for a few hours. Thanks, Mom.

So then I decided I hadn't had enough fun lately, and that it ws time to start tackling the medical bills. Well, we have Anthem Healthkeepers, an HMO. Apparantly they decided that effective July 1 they would not pay for any services for non-participants above set amounts. UVA is a nonparticipant. I got no notification of this, and have requested further info. I don't see how they can possibly do this. They're saying they'll only pay $ 85,000 for Sadie's medical bills, as that is the maximum they allow for out-of-network expenses for a "condition" such as this one. Please. That's a drop in the bucket. We have ONE bill alone that is over $ 285,000. That was for the hospital - it didn't cover the physicians, cardiology team, radiology, surgery... the list goes on. So, I have new battles to wage in my free time. I mentioned to one of the insurance reps that I talked to that I had no choice... it was the only facility available that could save Sadie's life. She told me, well, at least you have her and she's ok. I told her that we are lucky to have her, and I'm forever thankful, but I'd prefer to keep my home, vehicles and belongings as well. Especially since we've been paying Anthem in the event that something like this ever happened. That's why they call it "insurance." She had no response for me. Not that I expected one.

I just want to know when the fun is going to end. I would like more stress (I haven't even TOUCHED how work stuff is going right now). I mean, really, we just don't have enough of this in our lives right now. My mood has gotten really nasty these past two weeks... I don't know if it's just the post-partum blues hitting about 2 months too late or if I'm losing my marbles, but I really just don't feel like I can take much more of this. I rarely leave the house, and don't feel like I have any time to do anything except work, feed the kids, change poopy pants and occassionally catch an hour or two of sleep. I know all moms go through it after having a newborn (been there, done that), but this time around is just so much more intense with all of the other outlying circumstances/problems/etc.

I think I need to have a really good, like 24-hours alone with good wine, Belgian chocolate and sappy chick flicks and then I'd feel better. That, or I need to beat the crap out of some inanimate object that represents the American health system. Maybe I can rig up something on Katie's bopping bag...

Wednesday, November 01, 2006

Results from the UGI... not good.

Sadie had her Upper GI test done this morning (a test in which she had to swallow Barium and have an active x-ray taken of it's movement through the course of her GI tract). The pediatrician had ordered the test to see if she has reflux, since she's been spitting up a bit lately. The spit up has gotten to be worse and worse in the past week.

So, to the hospital we went... again. They strapped her onto a board and had to pull her arms over her head and tape her down for the test to be done. She was a trooper and cried only a little, and even took all of the barium through bottle feeding (which she normally hates). A doctor was present to read the video as it happened. He told me that there was little reflux, but that there was a problem with her esophagus. The food was collecting at the bottom of the esophagus and was not going into the stomach as quickly as it should. He said he would not speculate as to the cause of the problem, nor its treatment. That's when the first red flag went up.

The pediatrician finally called at 7:00 tonight with the results. She said that there was a problem with the mobility of the food through the esophagus, and that she didn't know the cause. I asked point-blank if she's seen this before (hoping she'd say it was common with kids), and she said she had not. The normal wait-time in this are to see a pediatric gastroentrologist is 3 months, which won't do - she's getting us in as soon as possible.

So, I've started searching the internet to try to figure out what the possibilities could be. None of the things I've come across are exactly wonderful. I'm scared. Many mention (ok, most) surgery. Jason told me not to get too worried yet, but I know what I saw in the test today, and I know how I was treated. The calm words, but no reassurance. I've been there and done that before.

I have to wait until Friday to find out when our GI appointment is. I hate waiting.

The worst is, in what I've read tongiht on the web, almost all espophageal abnormalities cause chest pain, and often back, shoulder and neck pain. So Sadie is likely to still be hurting. Could that be the underlying cause of all the crying? I think it's highly likely. She cried a ton again this evening - from about 4;30 - 9:30. I feel so helpless to relieve her discomfort/pain/whatever it is.

I just don't get it. Why does one little person have to go through so much? I really hope I'm overreacting and this is minor, but my mommy-senses are tingling again. Neither doctor I talked to today had answers, and we're being referred to a specialist with urgency. This is not good, and I just know it.