Thursday, November 19, 2015

Ambiguity is kind of annoying, but also kind of not.

Sorry for the long delay! As I wrote, October is a crazy month for us normally and then the three kids all getting sick it made this year worse. November's been ok so far.

Today was Eden's monthly exam. We didn't have one in October, so it's been two months since the doctor has seen her. She was thrilled with Eden's growth and stats. Her oxygen levels have been great, above 90 even when she had croup, and her weight gain is good, too. She's active and healthy and happy and just a great little girl. She's up to 18#12 and 27.5" long.

When we saw Dr. S, she started off by telling me about her attempts to get Eden approved for the anti-body shot. The peer she did a peer-to-peer with is an oncologist who works with adults, so he didn't completely understand her description of Eden's cardiac anatomy. So he denied us. Dr. S has requested an appeal and is hoping that whoever she talks to will have a better understanding of the heart. We're all a bit skeptical.

Then, the part we've ALL been waiting for: surgical talk.

If you recall from my August post, Dr. S wanted to send Eden's chart and file to doctors at Stanford and Columbia to get a consensus because her gut reaction was to leave Eden alone for a while and not do surgery. There's a chance of heart block because of how everything is laid out, which would be bad. There's also a risk of heart block if they do nothing. Since she's not a surgeon, she wanted to get everyone's thoughts on Eden and see what they all thought. She's heard back from Columbia.

Dr. M is the doctor at Columbia and based on Eden's chart, he thinks he can do her surgery without the risk of heart block later on. He would want to do the surgery sooner rather than later.

Dr. F is the doctor at Children's in Dallas and he was initially saying he wasn't sure if he could do it without there still being a chance for heart block. He wants to do a heart cath once Eden is a year old and then potentially do the surgery shortly after.

I don't have a name for the doctor at Stanford, but a quick internet search only brings up one cardiac surgeon. They're having some kind of conference soon and Eden's case is going to be discussed. Hopefully Dr. S and Dr. F will get the info quickly after. Then, they'll sit down with all the info from all the doctors and be able to present several options to us. Afterwards, Dr. S said she recommends we talk to the doctors personally to ask any questions we might have.

We have final say in what happens, where we go, what surgery Eden has. The doctors are all there to help us make the best, most informed decision we can. Dr. S promised to be brutally honest with us as to her opinion as to what would be our best option, even if it's not them. No matter what, she'll be our pre and post care provider.

If we go with Stanford or Columbia's plan, we'd do the heart cath and surgery there....meaning traveling and being across the country for weeks. There's a slim chance that one of those hospitals will suggest a surgical plan that Dr. F thinks we can do in Dallas, and that's what I'm hoping for but I'm very skeptical.

So again, things are still ambiguous. But a little more definitive? Something. We're fairly certain that we'll be having a catheter procedure in the first three months or so of next year and very likely surgery shortly after that.

It makes me want to throw up.

I don't like hospitals or big cities and I despise the thought of Eden cut open and in pain during the recovery period. I hate the prospect of being so far away from the boys for so long. I hate the turmoil this is going to bring to my family and the uncertainty of the whole situation. I wish I could just ignore it and it would go away.

We're thinking we'll hear something definitive by mid December. Our next appointment is December 17, the week before Christmas. The next two months will be a lot of thinking and researching and talking and planning. And hopefully by this time next year, all the big scary stuff will be behind us.

In happier news, Eden is pulling up. She doesn't know how to sit back down so she kid of releases and falls, which makes her cry. I haven't gotten a picture yet, but she's pretty cute and SO proud of herself when she gets upright.

Austin has officially taken over as praise leader for Grace Falls at First Christian Church. So if you've ever wanted to sing or play an instrument in church, hit him up! He's looking for new blood for the band and pretty much anyone will be welcomed.

Eden's Medical Fund

She was fascinated by the baby in the mirror. 

Her hospital gown was a little too big. Maybe in a year or two it'll fit. lol

Wednesday, November 4, 2015

We Survived October!

It's been a while, I know. I'm sorry. In my defense, October is a bad month for us. Austin has the BEST robotics competition nearly every Saturday and works on it most evenings and this October, I had three weeks of the kids being sick, one after the other. I mean, I guess I appreciate that they didn't do it all together? But gah. It was not fun. When Eden woke up with croup after her brothers had had it the two weeks prior, I called the doctor and she just called in a prescription, saving me the $40 sickness visit charge.

Since I last wrote, mostly we've been dealing with the croup. First Elijah, then Asher, then Eden. Both boys started it off with vomiting and fever, then just the coughing and loss of voice that is croup. Elijah got done then two days later it was Asher and two days after him was Eden. Eden, surprisingly, handled it the best and Asher was the worst. Eden didn't throw up, she mostly just coughed and whimpered a little and was a bit more clingy than usual, but overall she did great. Asher whined and complained and cried and just generally got the short end of the patience stick because I was SO over it at that point.

Halloween was good for us. No trunk or treat by our church but the neighboring one had one that was pretty sad. We were the Ghostbusters family, with Austin and I dressed as Ghostbusters (t-shirts we got on Amazon), Asher a random skeleton (sure, why not), Elijah as the Stay Puft Marshmallow Man (costume crafting is NOT my strong point) and Eden as Slimer (she was perfect.) The kids and I wore our costumes for their Halloween party at FKO and then again on Saturday for the trunk or treat and then actual trick or treating in a friend's neighborhood. We came home with three buckets of candy. Not too shabby. lol

Mom organized the annual International Gift Festival (that thing has had so many names its hard keeping track) over Halloween weekend and I think it did pretty well. I haven't heard the final numbers, but when I was there working for 2 hours Saturday morning we had a steady stream of customers.

Austin's parents came down for the weekend to shop at the craft fair and to trick or treat with us. They wore t-shirts with the Ghostbusters logo on it, so they were part of the theme, too.

On Eden's medical front, we still have no news. I know, it's annoying. No one is more aggravated than me. It's been three months since the visit where we got the news we might not do surgery and no confirmation or denial of that. We didn't have an appointment in October because she's doing so well and there wasn't much need for one. Even with croup, her oxygen levels didn't drop much. She was in the mid-80s consistently during the spring and early summer but over the last several weeks, she's been mainly in the lower-90s, sometimes even the mid-90s. With croup, she was in the upper-80s.

She's crawling and thinking about standing up (she'll put her palms flat on the floor and straighten her legs into a standing position with her butt in the air, stand there for a moment, then sit back down like "well that didn't work." She still isn't a fan of baby food and does ok with table foods we give her. She loves puffs and yogurt melts and gnawing on basically whatever she can get into her mouth. Which recently has become her toes. Teeth into toes is not a sensation she cares for, yet it continues to happen.

So we're trucking along. Nothing terribly exciting happening around here. The kids are like puppies half the time, the boys rolling around wrestling on the floor while Eden gnaws on a toy nearby. Austin is finally getting to relax a bit since BEST is now basically over (there's a regional competition in Garland in a couple weeks) and I'm gearing up for the Thanksgiving expedition to New Braunfels. We have our next cardio appointment November 19 and I'm REALLY hoping they'll have something to tell us.

Until the next post, have a great week! Or month, as the case may be. In my defense, I only think "oh, I should post" at inopportune times, like laying in bed trying to fall asleep, or in the shower, or driving to somewhere. Never when I'm at home just hanging out.