Life has been rolling along and I’ve not had time to update really. Mason became a big brother about 2 weeks ago and is loving not being the youngest anymore. He’s 18 months old and thrilled with baby Samuel. You can see a lot more pictures and posts about life with baby #8 on our other blog: Our Busy Homeschool.
Mason has a bit of a medical problem going on at the moment. Today he and I went to Myelo clinic and after seeing several doctors, wound care specialists, and so on we came home with a bunch of stuff to try and a checkup in a week. You see, this wound/sore is on Mason’s backside:
It’s not infected(the yellow is skin stained from poop)but it is open and in his diaper area, which has lots of poop, and it’s in a place that gets pressure when he’s sitting so it opens instead of healing. Not a good thing and of course I got to hear the worst case scenario from a robot doctor (a lady who seemed to have no feelings, just blunt abrasive-ness and an assumption that we will end up worst case scenario). All of which I’m trying to handle in my just finished a pregnancy hormonal state. I think I’ve cried more this morning than in the last two weeks combined!
For this week we will be using a spray(CarraKlenz) to clean it, a gel(Carrasyn) to fill it, covered in sterile dressing we change twice a day. Below that, between the wound and his anus we have used DuoDerm, plastic , tape, and Eakin adhesive putty to make a shield to keep poop off of it all. We’ve also put a DuoDerm strip above the opening trying to hold the butt cheek area together some so it doesn’t open and tear more when he’s scooting around on his butt.
For added measure we’re reducing his Miralax dose to firm up his bowel movements so they aren’t so wet but hopefully not so much he becomes constipated and adding in an enema to empty his bowels every other day to help keep him regular and cleaned out.
Yeah, they like complicated things. Of course it’s better than the robot doctor’s suggestion that I magically keep my very active 18 month old from sitting up for at least a month to keep pressure off the wound. I laughed at that one, explained we had 7 other children and that unless they wanted to sedate Mason for a month in the hospital there was no way he would lay around while everyone else is playing in front of him. How do you tell an 18 month old to just lay down all the time when he feels perfectly fine? Remember, Mason has no feeling on his butt so he can’t feel this wound – which is a blessing - but means he doesn’t even have pain as a deterrent to sitting and playing.
We’re also to avoid long periods of sitting – wheelchair, booster seat at a table, carseat. No standing in HKAFOs or his dynamic stander.
In case you were wondering, their worst case scenario involves bowel surgery so he no longer poops through his bottom to keep the area clean and allow things to heal. Maybe. They would reroute his bowels to his abdomen to drain through a tube and into a bag. And the surgery they suggested (colostomy) *might* be reversible with a second surgery, but probably not. If we have to we will, obviously, but there are other options. And doing the colostomy would complicate those surgeries, ones we already are considering as Mason grows a bit older.
My suggestion was that they were nuts and if they wanted better bowel control we could consider the MACE surgery where they put a similar opening in the abdomen that goes to the top of the colon. Then you flush the colon clean with daily enemas from the top down (more effective than enemas like we do now beginning from the anus and pushing fluid up the colon and coming back out). We would be able to do these on a potty seat each night, keeping the poop from his wound, and hopefully keeping him poop free the rest of the time.
The MACE is a surgery we will most likely be doing in a few years anyway, as Mason has no bowel control or sensation, major paralysis, and with his balance issues it will be difficult for him to do enemas himself when he’s older unless he can work from the abdomen area. Our goal is always to work towards Mason’s independence and this is one surgery that is on our radar to move towards that as he gets older. Sigh. The things I never thought I would need to figure out!
So it’s been a bit of an emotional overload today for me. Spina bifida complications sneak up on me and I hate it! Yes, I know Mason is medically complicated. I have accepted the fact that he could need random brain surgeries at any time (current count is 6 brain surgeries). I’m okay with physical therapy and bracing, wheelchairs and other adaptations. But when his body is hurt and may not heal, when doctors are trying to figure out what to do and tossing around major surgeries as possibilities I feel like my feet have been knocked out from under me all over again.
As my mom reminded me, God has this covered. He has taken care of Mason from before he was born and none of this is a surprise to God. No matter what route we end up taking to get this healed God will work it out for Mason’s good. He’s got a plan for Mason. We just don’t get to see the plan ahead of time.