Wednesday, August 11, 2010

Torture all around...

In addition to our usual six therapy appointments and one weight check this week, we also have an appointment tomorrow to get her helmet fitted, a doctor's appointment for ML on Friday, and two pre-op surgery appointments for Maggie, whose surgery is thankfully now scheduled for September 1st.

Yesterday was her appointment with the radiologist to do an upper GI study to make sure as the surgeon said, "her stomach is in the correct place when I cut her open". When I made the appointment the scheduler told me not to feed her after 5 am the day of the procedure. Note to self: make a note to self to remind self of this important matter,otherwise you will be stuck watching back-to-back episodes of Hannah Montana in the radiology waiting room surrounded by screaming children (including your own)for two hours until enough time has passed to do the procedure.

Also, why didn't anyone tell me that an "Upper GI Study" is so awful that it would be an effective torture device against our terrorist enemies? At first I thought it was so cute when they straightened her legs and strapped them down on the gurney. She was cooing and smiling  - she looked so sweet and little that I took a picture of her:

But then the stretched her arms above her head, strapped them down and levitated her up in the air and started jamming a tube down her nose and into her esophagus and stomach. I could see on the screen the tube moving all around her upper gi organs - the whole time Maggie was gagging and screaming. But it gets worse - the table she was on rotates (see that blue circle) so the whole time the radiologist is flipping her all around trying to get different angles. I told Justin she reminded me of a rotisserie chicken on one of those rotating ovens you see at Costco. And it didn't last a few minutes. The  horrific screaming lasted over 30 minutes as I stood watching helplessly in the corner.

And today we were back at Children's Hospital for another pre-op appointment. The anesthesiologists have to do a physical on her to make sure she is okay for surgery.  You would think the child has had more than enough tests to give them complete medical information, but no, I had to sit there for 30 minutes and go through her medical history from bed rest on (which I have already told to about 40 people at the hospital but oh well).

So I have no idea what a physical on a nine month old entails (they didn't, as Justin suggested, strap a sweatband on her and make her run on a treadmill) because they took her temperature and I found out it was 101.3.  I had no idea! Of course the guilt kicked in, and I started babbling about how she didn't have any other symptoms and maybe it was the car seat making her hot. After all, it is 103 degrees in Dallas today and I am dragging this poor baby all over the place. I asked them to try another thermometer beause those temporal scanners are so inaccurate. But the hospital office didn't even have an old-fashioned thermometer so we tried three different temporal scanners. Two said 99.9 and one said 101.3. The nurses and NP debated for 30 minutes whether or not they should do the physical or reschedule.(If it turns out she has an infection the physical is rendered obsolete and we'd have to do it again anyway). Finally they said they would just go ahead and do the physical - but at that point I only had 15 minutes before I had to leave to pick ML up at camp, so we had to reschedule anyway. Bummer. But I did ask the Nurse Practitioner to at least check her ears to make sure she doesn't have an ear infection (which she didn't).

I also asked her to look at this red spot that has appeared between her eyes on the bridge of her nose last week. At first I thought she scratched herself or maybe the tape from the ng tube irritated her nose. But it hasn't gone away. So I started getting paranoid it was another hemangioma. She has one on her right cheek that appeared a few weeks after birth. You've probably seen a baby with one and wondered what it was and were scared to keep looking at the large growth on the child's skin because you were worried you would offend the mother (trust me, they are used to it, you are not going to offend them and you don't have to pretend it's not there either). Anyway, let me educate on what a hemangioma is because I had never heard of them before Maggie: it is not a birthmark, but a vascular thing, sort of like a blood vessel on the outside of the skin. Girls, preemies, children on oxygen, are all at higher risk for them. Someone told me that trauma at birth can also cause them. Check, check, and more checks for us then!

Thankfully Maggie's on her cheek is just a "strawberry hemangioma," meaning it will stay small for a year or two and then disappear completely. Other kinds, however, can continue to grow and can be as large as a baseball or can grow all over a child's skin. We went to a pediatric dermatologist several times to make sure it was the smaller kind and she watched and measured it and determined that it's not going to get any bigger. So when I saw this new thing on her nose, I started freaking out that it's another one (I mean this week has been tough enough - I don't have the energy to focus on one more thing). And no matter how superficial it is, I just don't want her to have this huge growth on her face. I can deal with a little thing that will go away eventually, but I just can't deal with a huge growth that covers her face. (I know, I know, I am overreacting but it's just the state I am in right now!) Anyways, the NP told us to go back to the pediatric dermatologist again because if it is something other than the strawberry hemangioma, they may have to give her something to treat it - which basically means add multiple more appointments to our crazy schedule. Ugh!

So I left that disaster of an appointment and because I left my stroller in the driveway I had to run with the car seat carrier banging against my already bruised thighs. I raced through the lobby and across the steaming parking lot, sped to school, and found her Mary Lawrence all alone with her teacher waiting for her mommy. No big deal, you say. But it is to me. I am so worried she feels like Maggie is more important than her. Besides, something is definitely going on with Mary Lawrence this week because she has completely reverted back to "holding" you-know-what. (If you don't know what, look back at my older posts!) And that stresses me out beyond belief because I have had to give her extra Miralax so she can't "hold" it, which makes her leak you-know-what, which makes her technically not potty trained, which makes the whole starting preschool thing in a few weeks a little stressful. And she no doubt senses my stress and so, yes, it's a vicious cycle.

Needless to say, it is only Wednesday and I already want to take an emergency chute out of this week! Sometimes I think it'd be so much easier to escape under the covers of a deep depression than to deal head on with what I deal with on a daily basis. But my children's well-being and health are infinitely more important than my own self-pity. Like other moms, I have no choice but to keep marching on...but hopefully it will be with a more joyful heart in the future:)

Update: Maggie does not have a temperature on any of my thermometers Could it be that the combination of extreme heat and the car seat carrier raised her temperature? If so that is really scary...


  1. Hi Lee, I have been keeping up with you and your precious family through your blog. I want you to know that I am sending up a big prayer right now for your strength and for healing for all your girls. I can't imagine what you deal with on a daily basis, but know that you are inspiring and convicting many of us with your story. I pray that God blesses the rest of your week and you can get a breather at some point.

  2. Still praying for you, Lee. A lot!

  3. Lee, I have noticed that on a drive home from the park on a hot day, the kids do get a little extra warm from sitting in a hot seat! I agree that it is scary! It has surprised me a few times because I make sure they have air on them.

    Praying for you. You are doing an amazing job of keeping it all together!

  4. Poor little Maggie. I am glad that test is over and that you have a date scheduled for surgery. I have been meaning to tell you that Kendall prays every night for "ML's sister to grow bigger and to help her eat." I guess she just heard us talking about it and that is what she prayers for each night. I always ask her if she has anything else and she says, "no, just that". And, please call me - I would have been happy to take ML home with me after ballet. I just have my one child, and although she makes life crazy at times, I have plenty of time to help when you need it!

  5. bless you're heart with the week you're having. Okay, my mom is a radiologist and I don't think she has ever tortured a child that much...too bad she's not in Dallas. And the pictures below are precious of Maggie and ML!! I can't imagine how stressful all this is for you and the girls, but you're doing an amazing job!! Praying for you and your sweet babies...

  6. I know the feeling of worrying about the older sibling not getting as much attention. It's so hard. But I think you're doing a fabulous job. And you're not alone with the potty training troubles. My 5YO just reverted back to not using the potty AGAIN... it's so frustrating. We'll send lots of prayers your way, for you, your hubby, and both of your gorgeous girls.