2/21 - Things going well; figuring out the next steps

Hello from Houston! Sorry that we haven’t had an update to you all in a while, but we’ve been a bit busy on a lot of fronts. Jamie is doing very well and gets better every day. Even though it’s still a painful process, we’re happy to report that Jaime and her doctors are getting their procedures streamlined and that leads to a more comfortable experience for Jamie.

Starting with the most important update, we spoke with Jamie’s plastic surgeon today, the one who will be performing Jamie’s “groin-flap” procedure. As we’ve discussed, the next step with her finger amputations (“FAMPS”) is this groin-flap procedure. Today, her plastic surgeon (Doctor of Plastic Surgery - “DPS” - since I don’t know how he feels about us putting his name on the blog) talked with us about the next rounds of surgeries on her hands. There will be many surgeries, by the way; we were told that there will be about 4 to 6 surgeries, but we aren’t too worried about the ultimate amount of procedures that Jamie will need. The first surgery (the “Hand-Flap” surgeries) will be taking place in the next week or so. There will be one Hand-Flap surgery per hand. Each will involve cutting a slit in her side, below her armpit and the finger tips will be inserted into this slit. I know that this is complicated, but remember that there are small (1-2 cm) pieces of bone sticking out of each finger. So, for example, the fingertips on her right hand (or maybe the whole hand, I’m not sure), will be inserted into a slit below her left armpit. The hand will stay there for 2 to 3 weeks. Then, they’ll repeat the procedure for the left hand/right slit.

We also learned what will happen during and shortly after these surgeries. While her hands are in the slits, skin will be growing around the exposed bones. When one of her hands is removed from the slit, the skin around her finger tips will resemble a mitten, not a glove. DPS mentioned the next round of surgeries that will follow the Hand-Flap surgeries. These will involve, more or less, shaping these mittens to look like hands. Then, in passing, DPS also mentioned a possible surgery in the distant future where we could lengthen a bone in each of Jamie’s thumbs. This is waaaaay down the line, and won’t happen for many months, but at least we’re finally identifying some guideposts on this long, winding journey.

In other news, Jamie has been eating much better. She’s coming off of antibiotics today, which will help her eat better in this coming week too. Unfortunately, her improved appetite may be too little, too late. Everyone who reads this with any regularity knows that we’ve been fighting to raise Jamie’s protein levels, but, despite Jaime’s best efforts, it looks like we’re going to fall short of our ultimate goal of having Jamie eat normally from here on out. She’s going to need to rely on a semi-permanent feeding tube for a short amount of time while her body is healing and therefore requires far more protein than normal. We’ve got one week for Jamie to ramp up her caloric intake and protein numbers. If she can’t sustain the types of protein levels that her doctors are hoping for, then we will have to rely on the feeding tube. We’re not too upset about going on a feeding tube again. This one would go directly into her stomach and it would be slightly larger than the nose-based feeding tube. We’d prefer for her to be eating enough on her own so that she wouldn’t require the tube, but we’re only going to get one shot with her leg flaps and hand-flap surgeries, so if she can’t sustain the required protein levels on her own, she’ll go back on the tube. No problem.

Her daily schedule is still very busy; it’s probably more busy than it is painful. The whirlpool procedure has normalized. The big lifting machine – a variation of the earlier purple-people mover we used to get Jamie from her ICU bed to a chair – is fixed, and it is very comfortable for Jamie as she submerges her whole body in the water at once. Physical and Occupational Therapies are now the most important part of her recovery and we’re hoping that Jamie is able to complete as much of these routines as possible (she should be doing three sets of exercises a day) without getting tired. Physical therapy on her hands is also going to be heavily emphasized going forward.

That’s all we need to tell you for now. We’re very grateful that Jamie’s Aunt Nancy, cousin Jennifer, Uncle Zeke, Aunt Shirley and Kathy and Judy have come and stayed with Jamie while mom needed some additional support. We’re working on getting thank you letters out to all of the people who have filled our room with so many beautiful and delicious things. We’re starting to see the results of all of our hard work, and, as one of our doctors said, we’re approaching the beginning of the end of the road. It’s time for me to stop typing and to get back to hanging with the family. Jamie’s doing great and will keep getting better thanks to all of the positivity and encouragement she’s been receiving. Keep Jamie in your prayers!