Not too much to update on today, which is a good thing! We did have our appointment with the urologist and our pediatric surgeon yesterday. The urologist is actually the chief attending for pediatric surgery so he is very familiar with Elias. He discussed with us his plan for surgery to fix the reflux issue with his kidneys and the hypospadia . This will actually end up being a three to four surgery process beginning as early as January. There needs to be time for the tissue in the area to heal prior to moving forward with the next steps so there will be approximately three to four months between surgery phases. He has done many of these surgeries and confident that he will be able to correct the issue, even with the severity of this defect. On a scale of one to ten (one being the least severe) he gave it a 9.5 degree of severity. Again, it is something that is manageable and he is confident. He is also wanting to try and time things with his general surgeon for studies he may need. Also, it was discussed doing the first part of this surgery in conjunction with one of his next esophageal dilatations to reduce Elias stress.
As for our session with our surgeon, he was very happy with the way Elias was looking. He is completely on board with coordinating the dilatations and the hypospadia surgery. Elias G-tube has not given us anymore problems (knock on wood) and is looking good. He was pleased with the way the Tracheostomy is looking and praised us for keeping it looking so pristine. We also took this time to discuss the next phase of Elias GI repair (imperforate anus). The next step is to actually create the anus opening and allowing this time to heal before phase three; closing the colostomy and reconnecting the intestinal tract. A definitive timeline was not set exactly. He would really like to see Elias get a little bigger as well as trying to reduce the frequency Elias is having surgeries, with all the other things he has going on. It is something that we will be monitoring as to when might be a good time.
So Elias at this point has at least six to seven surgeries still to come. This is not counting the esophageal dilatations, bronchoscopy, and Decannulation ( reversal of the tracheostomy) that are pending for Elias. Obviously, ever surgery carries certain risks. They never get any easier in terms of worrying. However, Elias has always been tough and stronger than anyone could have imagined, and that does provide some comfort. We remind ourselves that most of his surgeries will be completed before he will begin to have memories and that is a blessing. We know he will continue to be strong and battle through each challenge brilliantly as he has so many times before.
Next week is another busy week for us. We have appointments with Pulmonology, GI, and Cardiology. We also have the esophageal dilatation surgery on Wednesday. This should be an outpatient surgery, but there is a 50% chance they will keep him overnight for observation as a precaution due to the trach. Much of that decision will be based on Elias at the time. So hopefully we will get to come home that day. Otherwise, Elias is doing well overall. He is having some positional breathing difficulties and sometimes some breathing challenges overall. We have had to give him more breathing treatments in the last few days and his secretions in his trach have been greater in volume and thicker. It is hard to tell what is causing this, but it could be from the weather change and temperature fluctuations. Fortunately we see the Pulmonologist on Monday and she might be able to help pinpoint the cause or if there should be reason for concern. For now though we are just focusing on trying to get Elias to continue to do developmental exercise and play. He is really taking an interest in hands. Not just his own, but others as well. He watches them so intently as if he is amazed by them. Sometimes you just have to wonder what goes through a child's mind at this age? Elias has really been more active with his hands the last few days too. It is amazing to see him accomplish some of these things. He loves to hear the word amazing too! Every time he does something good with his hands we always look at him and applaud telling him how AMAZING that was. He always laughs when we do this, but I think he is beginning to understand the positive reinforcement. Well, here is to a productive and peaceful week. Thank you all again so much for your support. As always we will keep you posted and we should have some new photos soon to put up!