McCoy has been such a strong trooper through all of this. It may be funny to think that an adult can learn something, or be inspired by, a baby. But from McCoy's strength and endurance through this process, I've felt my strength to endure hard things grow. I have felt inspired by his example to me. He hasn't let the expanders hold him back. He began crawling this last week, and although it took him a while to finally be able to hold all that weight from his expanders, he now just goes and goes and goes. The weight on his back (which our pediatrician calculated equating to an average weighted adult carrying an additional 55 pounds on their back) pulls McCoy back or side to side, and somewhat off-balances him, but he's learned to push through the awkwardness of them and explore things around him. I am so excited for him to know what it feels like to move around free from that extra weight and bulkiness. I am also excited to hold him and squeeze him and cuddle him without those bubbles everywhere!!
So - the countdown is on: surgery is 5 days away. Wednesday July 6 at 7:30am. We will check in at the hospital at 6am, so we'll leave home around 5:30am. The last time McCoy can breastfeed is 3:30am, and you can bet I'll be waking him up to make sure he gets one last treat before his fast begins ;) We will meet with Dr. Burns before the surgery obviously, and he may or may not measure the expanders at that time. To us, it doesn't really matter what he does. We're here at the end and there's nothing else we can do but hope and pray. Dallas and I feel at peace. We have fasted for nearly 6 months now, and with our prayers and so many others, we know that it will all work out okay, no matter what. Of course, deep down we still wish Burns could get it all, but we'll just have to see if that is to be our miracle or not. We've already been so blessed up to this point.
Rundown on surgery schedule:
We will be staying at the hospital for a 23 hour watch (as they call it), so overnight. Mom is driving up Tuesday. Dallas and I will drive McCoy over for check in, and be together until McCoy is taken back to the OR. Dallas will leave for work at that time, and Mom will come be with me at the hospital while we wait. The surgery is blocked out for 4 hours. Then he'll be taken to recovery, where he should be only for about 1-2 hours. (Last time he was there for practically the entire day, which was not normal, nor good). After he's stable we will be taken up a floor to our private room where we'll stay the night. Dallas will come over after work and stay as late as he can. Then it'll be me and Mom again through the night taking care of him. The next morning we'll be discharged, but probably won't get home until 11am ish.
We were able to get some good info from Ly and Illiana regarding recovery:
McCoy should recover very similarly to how he did last time. The only difference will be that he will have drains. One or two, we don't know how many yet. He may be wrapped up tight around his midsection to keep everything in place. The sutures will be dissolveable underneath the skin, and then the incision will be bonded together with medical glue (Dermabond). We will not have to do any wound care (unless the incision breaks open). Every day we will empty the drains - at this point I'm not sure how often. When the fluid draining is below a certain ml amount, the drains can be removed; Ly believes this will occur around or before the 1 week mark. We will have a post-op appointment probably on Monday after surgery. McCoy will be on an antibiotic, and hydrocodeine for pain. They anticipate us being able to slowly wean him off the hydrocodeine sooner than last time, and moving to tylenol with codeine, then slowly moving to just tylenol, until all the pain is gone at which point we'll just finish out the antibiotic. I'm less nervous about dosing the medicine now that McCoy eats solids and drinks well. Hopefully this won't be an issue again. Other moms have told me McCoy will be able to sleep on his back immediately post-op, and Ly said the same thing. I plan on having him sleep on our chests though, as sometimes the drain placement can be uncomfortable to have pressure on. Lastly, the nurses told us that week 1 and week 3 are probably the most critical times to be extra cautious about McCoy not doing any activity that could strain his incision, as it will be at it's weakest during these weeks. The first week is obvious - the skin will not have begun to join itself, and will only be held by the stitches and glue. The 2nd week the skin begins joining itself together. The 3rd week, it's still healing together, but the stitches begin dissolving and the glue begins breaking down, so the skin is at it's weakest, maybe even more critical during this time than the 1st week. All in all, most moms I've spoken with have said that recovery from removal was easier than insertion (perhaps because we have a better idea of what to expect?), that the child bounces back quickly (within a few days, less than a week), and that the pain seems to be less in general. However some have said coming out of the anesthesia was more difficult, as the removal surgery typically takes longer than the insertion, therefore having been under for longer made for a longer time coming out of the affects of anesthesia. McCoy already struggled a lot coming out the first time, and that surgery was blocked at 4 hours (just like his removal will be 4 hrs), so I'm anxious about how well he'll come out. But, as long as it's not worse than the first time, that will be good.
This last fill (Jun 30th, the 16th fill) we were only able to fill 3 expanders. They are all so big now that the ports have become inaccessible. Below are the last progress pictures.
Final TOTAL volume: 2,394 cc's !!!
Top middle: 350cc
Bottom middle: 635cc
Left side: 335cc
Left shoulder: 360cc
Right side: 376cc
Right shoulder: 328cc
