Home at last!

I was able to go retrieve the rest of my family today around noon. So, needless to say, we're all home and resting. Emily is a bit restrained from mobility as can be expected. She was propped up against the fireplace with a pillow a good part of the afternoon.

I saw, for the first time, the incision on her back. Ugh! Maria Marcela told me that it was 10 inches long and sure enough, it's basically the full length of her back. She's definately sore, but doing very well.

She was put to bed a little while ago and was crying asking that her feet be covered.

There is yet to go through the complete details of the doctor's summary for the surgery. I hope to post that soon. There is a follow up appointment with the surgeon in two weeks.

Thus far, everything appears to be good. There is one aspect that makes it very difficult for us with her tendency to "cry wolf" so often. So we're unsure as to, when she cries out, whether it's something we should be concerned about. Needless to say, it keeps us hopping. Overall though, everything appears to be settling well. She is not experiencing chronic pain, just soreness that is realized whenever she is moved, OR whenever she realizes she's not getting what she wants. :)

Thanks again to everyone for expressing your concerns, and prayers.

Day 3 - Recovering after Surgery

Everything is looking a lot better. Emily is wanting to sit up and is able to take steps, go to the potty, but retaining some in her bladder.

She displays some discomfort when Maria Marcela tries to move her around.

The doctor came in this morning to see her and said she'll be staying tonight as well. They just want to be sure and take all precautions.

Some questions we have for the doctor is her rehab and also what the state of her split spine is or will be; whether it can be expected to come back together as normal.

At this point, Maria Marcela will stay with her again tonight. Andrew is in school today while I'm in the office.

Status - Day 2 after Surgery

We just had the doctor in and was told we can expect her to be here a couple more days. We're still holding out for her to be able to walk around by herself and also go to the potty. They want to see evidence that her bladder is working properly.

Maria Marcela will be staying at least another night while Andrew and I go home so he can go to school and I can go to work tomorrow.

Emily has stood up on her own. She's also tempermental when staff come in. Otherwise she is doing fine. Since she's prone to seek a great deal of sympathy, we're not too sure when it really hurts and doesn't. The doctor tells us that kids typically think they're hurting more than they really are, that it's more psychological. I just wonder if they got that information from a kid. ;)

The red blotch on her chin from being in that position for nearly 6 hours has cleared up.

Day after Surgery

Good morning. Maria stayed with Emily last night in ICU while Andrew and I went back to the hotel. She is just now being moved to a standard recovery room and we have yet to know if she'll be going home today.

She was put in ICU yesterday because of the difficulties they were having with the surgery yesterday. Due to the length of the surgery, she had lost stubstantial enough blood to require a transfusion. That may sound more serious than it is, I'm just not sure. It may be that they just had to give her some blood. Apparently she had suffered a drop in blood pressure, but she is fine. They had her in ICU just for precaution.

One thing they're concerned about now is the affects the surgery might have had on her nerves, particularly which may affect her bladder control. I suppose that is yet to be determined.

We still haven't received the full report from the doctors, but hope to get that and post it soon.

Moving to ICU for Recovery

Thought I'd go ahead and post this pic. It's strange that she's got that distinctive red spot on her chin. Of course it's there because of laying on it for 6 hours.

All is well. Maria is in with her and since they wouldn't allow Andrew in recovery, we're in the ICU waiting area. Probably will head back to the hotel once we get word on what's next.

Out of Surgery

After nearly six hours of waiting, we spoke to the neurosurgeon and he tells us the surgery was a success. He said it was very difficult however. They made one larger incision than two and upon making the first cut to release the cord, it expanded about an inch, which served as proof that she was in dire need of this surgery.

We're going to get the details in writing as requested since all we heard was that she was alright. I will hope to copy that to the blog.

She's now awake and moving her legs. We're told that they're going to call us back in about an hour. Maria will probably stay with her the afternoon while I take Andrew back to the hotel.

Something that just came to my attention as the doctor was talking with us was Andrew expressing deep concern for Emily. He just crawled up into my arms was moping and sighing. I asked him what was wrong and he said, "I'm just worried about Emily. Is she going to have to get stitches?"

Maria mentioned that he was earlier talking about how worried he was for her. He's alright about it all now after realizing that she is going to be fine.

Thanks again to everyone for thinking of us and Emily. This is her first step and a big one.

Will post more later.

What is Diastatomyelia?

Diastatomyelia is a condition where we have the spinal cord is split in the middle into two halves. Each half is surrounded by a separate dural sac. In between the two halves there is a fissure, which usually contains a bony spur or fibrous band, which arises from the back of the vertebral body and attaches itself to the vertebral arch. This condition is usually associated with other vertebral anomalies like scoliosis, wedge vertebra and other bony anomalies. Occasionally there is overlying cutaneous changes in the form of hairy patch or skin pigmentation. Sometimes there is a dermal sinus overlying that area. .

Notice the two round objects that look like fried eggs. That is the two separately enclosed segments of spinal cord. Some cases would present with limb and feet defects in the form of a wasted leg. Other bladder and bowel changes can also be present. Various motor or sensory changes are seen.

This condition is usually found in childhood. In cases it may be a tethered cord syndrome.

In Surgery Now

Just thought I'd drop an update and a few notes.

It's a few minutes after 10 a.m. We're in the waiting room now and just received a call from the operating room that they're going to be another 45 minutes to an hour, but she is doing fine.

Emily and I got up early this morning to be here by 6 a.m. She was very calm and even allowed me to take her ear rings out without any pouting. :) She likes her ear rings.

Anyway, she only became disturbed when the room we were in was suddenly bombarded by about 6-8 people. This was when they shot a burst of liquid in her nose to start sedating her. Here is a pic of her in hospital gown.

The other procedure I was trying to think of in the previous post is called "diastatomyelia" which is describing what they will do for the area where her spine splits in two and then comes back together.

One interesting thing occurred this morning when the doctor performing the surgery asked me if he could pray over her. I told him that we've had many people praying for her and I certainly wasn't going to turn down one more.

We'll give you more news as we receive it.

Thank you to all have expressed concern and prayed for her to be made whole physically.

Surgery is Upon Us!

Well, we just returned from Cook Children's hospital in Ft. Worth today for Emily's pre-op procedures, which basically was us paying them our deductible portion. Needless to say, with this, we've fulfilled the full amount for this year. Now, we're just hoping that we're not going to get hit with the full 10% of the $35,000 they are charging for the surgery. I guess it could be worse.

Anyway, they took blood to determine her blood type, which they didn't tell us yet, what it is and then we had to wait around for the anesthesiologist to determine that she was prepared for the surgery. The notes of her having had heart problems was enough to alarm them and confirm that there weren't any complications. It was somewhat disturbing to us that they hadn't done their homework to gather that information before we came. Which they had access to. Anyway...

Surgery is scheduled for Monday morning at 8 a.m. And since they want us there at 6 a.m., we've opted to stay in a hotel there close by, particularly since she will be there overnight, maybe two, depending on her recovery and the success of the procedure.

Here is what they're going to be doing: Probing and discovery of condition. Untether cord from vertebrae in 3 different places. Address a particular spot of which the term escapes me right now. The doctor anticipates 6 hours of surgery time.

We'll keep you posted on this channel.