Q & A +/-

More questions and some answers... We expected going to today's visit to leave with a firm answer on when Liv's scoliosis surgery would be, but rather we now have more understanding. On the good side, as I mentioned in an earlier post, Olivia's labs came back normal, however Dr. Tis explained in more detail why Liv's nutrition is so much of an issue. He said that if a person's caloric intake is between 3000-3500 calories they would need about 8000 calories to recover from this surgery. That is a FAR cry of Liv's intake, and really painted a bleak picture of our chances of "beefing her up" on our own.

So we're back to the referral to a pediatric gastroenterologist (GI doctor). We assume that we'll see a provider at Bethesda, but I need to call "Mo" to get that appointment set up (hopefully tomorrow). It is now very likely that Olivia will, in fact, need a feeding tube. This is something we really had hoped to avoid, but Dr. Tis told us that she needs to gain 5-10 lbs. so her body will have enough energy to heal itself. It will also ease her recovery from surgery as she could receive medicine through the tube if she's sleeping or if her appetite is not good. Robin was in the room with us, and she thought that point was a particularly good idea since, "She won't have to taste the nasty medicine!"

Dr. Todd will be back the first part of September, and will likely want to see Olivia (well, we want Olivia to see him) soon thereafter. I will try to get her in to see him at one of the earliest clinic appointments he has. I hope that he's on the same page with all of this, and I prefer to wait to go forward with the GI doctor's recommendation until I have Dr. Todd's opinion.

Some details about the surgery for scoliosis: (if you're one with a weak-stomach you may not want to read this paragraph) They will put in two rods, one on either side of her spine and fuse her entire thoracic spine down to the illiac. They will use about 40 screws to hold it all in place, and the total weight of all of the hardware is just a couple pounds. Dr. Tis said that we won't get to count the hardware in her weight gain and she was definitely going to set off metal detectors! :) It was nice that he was so kind to take the time to explain the process and teach us about so many different things we know nothing about. I'm still not an expert, but at least I understand more of what is going to be done.

We still have options as for who will do the surgery, when & where. All of the options are good ones, so I don't think we can make a bad decision for Olivia. That is a really good position to be in. We are very blessed. The only concern for providers is who will be the anesthesiologist. That detail hasn't been worked out, but Johns Hopkins has 20 pediatric anesthesiologists, if we go with Dr. Tis. Dr. Todd and Dr. Leman will perform the surgery together at Bethesda and they will find someone very qualified to assist. "Mo" didn't seem to see this as a problem, just a step that hadn't yet been worked out.

Because of the nutrition the surgery will not happen in August or September, or may not happen in 2011. That 5-10 pounds is crucial, and we'll have to wait for it. I asked Dr. Tis about the risks of waiting. I was concerned that her curvature would affect her internal organs. He told us that the studies have shown that it typically takes a curvature of at least 80 degrees to begin affecting the internal organs. He said that Olivia would take years to progress to that point. We have time. I was very relieved to hear that. My question was, "How did she progress in less than 3 years from about 25 degrees to 67 degrees?" He said that happens when they have a growth-spurt, which Liv had a BIG one, but she's about done growing, so the rate of growth will be much slower. The risk just isn't there.

Once again God has put the capable people in place before we knew there was a need. I am very thankful. Please keep us in your prayers. There is still much to be done.