I have been putting the smallest band aids they make over Robbies exposure so he wont touch it. It hasn't been pussing a whole lot but everyday the exposure is getting bigger. I was in total shock once again when I lifted the band aid last night and the exposure is almost 10x the size it was last week. Not only can I see the shape of the framework I can now see into the cavity of the skin. The Oct 13 date is always on my mind and how many days we have left. I try and stay brave and not make a big deal of things in front of Robbie but now I am having anxiety attacks on a daily basis.
I keep thinking ahead to the surgery next year when the medpor will be placed back again. It will end up being after the year post op from the first combined surgery. This should of been the time when the medpor was to be fully healed. What are the chances not only of my little boy having the microtia/atresia but also not healing right from surgery. WHY!!!
I will post a picture of the exposure soon. Even though this blog hasn't turned into the positive experience I wanted it to be, I still feel obligated to continue on for a reference for those parents who need it. I still continue to pray and hope that our situation will change and this blog can start getting positive. We are not giving up and I have no doubt that Dr Reinisch is going to either.
Well we went from the fungus drops back to the bacteria drops today. The ENT took a culture from the exposure and it came back staph bacteria. The exposure site on the outside has doubled in size and I now have a 2x a day daily regime of squeezing puss out of the exposure to prevent build up and a possible worse infection. I never thought I would think this but I am looking forward to removing this medpor. I just think the little guys skin has gone through so much around the medpor. The sad part is again the medpor is starting to take shape and sink in and look really nice. It is a constant struggle to keep Robbie from touching his ear. The last thing I need is a 4 year old with dirty fingers touching the exposure. Tomorrow will be our 3 week count down to surgery. Then we will have the long process of healing before the medpor can be placed back in.
Well we got the word yesterday that Robbie will have a surgery in 4 weeks back in Palo Alto. I have not talked to either doctor but the surgery scheduled is to remove the frame work and some of the bad skin and then wait 3-6 months for things to heal before a new frame work is placed.
Last week Robbie started having drainage from the canal on the medpor ear. After talking to Dr Reinisch and getting some antibiotics called in from theCEI the out come of Robbies surgery almost 3 weeks ago to fix the tissue in the canal has seemed to fail. On Friday our ENT looked in the canal and there is not yet an exposure but the skin is not taking to the site. Our hearts broke when Dr Reinisch explained what is happening that basically the tissue they tried to save is dying and this will require another surgery replacing all the tissue in the canal on the trouble spot. Again this also means another medpor replacement. We are very heart broken and can not believe this is happening. Even with this next surgery there is still another surgery to lift the medpor ear after all heals. I will post more when I get more news.
Last Friday things seemed a little better. There was very little drainage coming out of the canal and it was only at night while Robbie slept. The ENT again didn't see any exposure in the canal on this last Friday the 11. So we were to say a bit hopeful for some miracle to happen. That night while bathing Robbie he had a sort of white puss trapped under the medpor and after washing it it broke through and he had puss drain. I emailed Reinisch and it really wasn't anything I have not already seen so I wasn't to concerned about it. Last night after bathing Robbie it again was oozing by me washing it gentley with a wash cloth. I called Tom in to take a peak and our hearts sank at the same time and no words were needed. We both knew at that moment that he had an exposure on the outside of the ear. I talked to Reinisch this morning and he instructed me on what to do to care for the wound and we are waiting to see when and where Robbie will have the next surgery. From my understanding this next surgery can play out a couple different ways. Please keep our family in your thoughts and prayers. I am attaching pictures of the ear showing puss coming out so its easy to pin point the spot and then with out puss. The back of the left ear is still looking good and we have had no issues.