Everything was going nice and smoothly. We managed to get to hospital by 6:30am. Everyone was early and on time. Jason was given his premed, the doctors were given the necessary blood tests that needed to be done. Unfortunately the premed didn't kick in before the procedure but Jason was ok with putting Woodie to sleep and then himself. Luckily he has gotten use to the nebulizer mask so putting the mask on his face didn't scare him too much. I left the operating theatre knowing that the procedure would be about an hour. I decided to go downstairs to have breakfast. I wasn't even half way through my breakfast and the urologist had found me. I said to him "gosh that was quick" and he said to me "no there is a problem". My heart sank WHY can't things go smoothly for us!!! Anyway whilst trying to stomach my breakfast he explained to me that after putting Jason under and before starting the procedure he noticed that Jason has "hypospadias". The "stand in" urologist failed to mention or see this and this was news to everyone and of course put a stop to the whole procedure. The urologist was very angry and embarrassed that this was not picked up when the "stand in" urologist did the cystoscopy.
I can't say I was angry, I was more in shock that poor Jason had gone through an anesthetic for nothing, only to find out this when it should have been picked up three weeks ago. BUT what can you do, this is what happened. NO good getting angry and worked up over this when there is nothing you can do. So unfortunately this is SO much bigger than the procedure we were about to do. We now have re-constructive surgery to go through.
Hypospadias is a birth defect in boys in which the urethra (the tube that carries the urine from the bladder to outside the body) does not end at the tip. Instead it ends on the underside. The urologist advised me that he does not do this kind of surgery, it is more complicated and only certain surgeons are trained to do this. He has advised that the operation is not urgent, it is more cosmetic and can be done in a few months to a few years. Dr Shaik who did Jason's Nissan and peg placement would be the paediatric surgeon to perform the procedure. Bruce and I don't want to wait too long, we will make an appointment to see Dr. Shaik and discuss the procedure and take it from there. If the procedure is not done there will be complications as Jason reaches puberty. We will see what Dr. Shaik says, I trust his judgment and know him well. I believe that it should be fixed as soon as possible in the next few months and not wait to long, depending on Jason's health and what Dr. Shaik says.
So poor Jason came out of theatre kicking and screaming for half an hour like he usually does. We managed to start polygamy at 10am and that went smoothly. What didn't go smoothly was at 6pm when polygamy was finished I was then told that not all bloods were taken and done and therefore they needed to re-poke him and take more bloods and needed a fresh morning urine. So we had to poke him again at 6pm to do certain tests but some of the tests couldn't be done as they are send away tests and can only be done on a Monday to a Thursday so have to be done the next polygamy admission in three weeks time. I had to take a fresh early morning urine on Saturday (wasn't impressed with that).
What a frustrating day for me and everyone involved. As most of you know any theatre procedure is scary and you have to prepare yourself mentally for it. It's not nice on the child going through it and everyone waiting to hear the news. I just can't believe poor Jason had to go through an anaesthetic for nothing but what can you do, what's done is done!! I still stand by my saying that "everything in life happens for a reason". For the urologist to break his collar bone when he did for us to have to go through another procedure three weeks later. Who knows why but I guess it was meant to happen this way. We will go and see Dr. Shaik and take it from there.
I also saw Jason's dietitian. His weight was 15.6kgs. He has lost a little and the dietitian and I spoke about some ideas for weight gain. She is going to do the sums and get back to me. What we are going to try is add some duocal to his neocate and also introduce a soya yoghurt during the day to introduce oral feeds as well as add calories. Oral feeds is something Bruce and I feel VERY strongly about. The idea is to get him off tube feeding but at this stage we need to listen to the dietitian and doctors. The neocate is the perfect formula to give his gut a rest and heal. It is a hypoallergenic infant formula for cows milk allergy and multiple food protein intolerance. It is also designed to heal the gut and restore the villi. Jason's gut needs to heal and be restored. The villi are a very important part of the digestion process. If the villi are destroyed and flattened (as in Jason's case), proper absorption of nutrients is compromised. The continued malabsorption of nutrients would obviously contribute to many problems. So for now we need to stick to the really expensive neocate. We will also add glutamine to his diet which also aids in healing of the gut. We obviously have to be very careful with concentrating the formula as what happens if the formula is too concentrated the body naturally thinks that it needs to draw extra fluid to compensate this and this too can aggravate the diarrhea. In Jason it's difficult to add extra calories as he does not tolerate volume (100mls at a time) and then have to be careful of the diarrhea issue.
Otherwise Jason is doing well, the first week of "home schooling" went off well. He is enjoying his mornings with "E" and getting lots of one on one attention. We started speech and OT on Thursday. The therapists were pleased with their sessions and said they were pleasantly surprised how he did after spending 40 days in hospital. He is getting his energy back, he isn't as fast as he was and tends to tire easily but he will get stronger. He is very happy to be out in the fresh air enjoying going to the beach an playing outside with his doggies.