Surgery was Cancelled

Let's start with anesthesia. They weren't happy that Max was breathing "fast." I kept stressing that he wasn't breathing fast and that this was his normal. Well my opinion didn't mean crap to him, because he still wouldn't listen. Max's sats were hanging out at 94 and he wasn't happy with that either. This too is Max's norm. By this point I was infuriated. The nurse also repeated every question she asked me 3 times so that was ticking me off even more. Let's move on...

...Dr. Tiao (the surgeon) came to see Max to evaluate his breathing. He too thought his lips looked a little blue and that his breathing was fast. Anyone that knows Max knows that his lips are EXTREMELY dry and have an extreme layer of dry skin on them which makes them look a lot paler than what they are, and his breathing was his normal! Don't get me wrong, we are happy that they were taking all precautions to keep Max safe, but when we see him EVERY day and we (his parents) tell you that he is not doing anything or looks any different than he does on a daily basis, then TRUST us. We wouldn't say he looks normal if he didn't. We too want what's best for him. Also, don't get us wrong, the surgeon is wonderful and we are really considering him to do the transplant. He is looked up to by many of our doctors. Let's move on...

...Dr. Tiao also brought up his concerns for the risks that this surgery had. If he got in there and wasn't able to use the same vein then he would have had to moved on with his subclavical vein (under the collar bone). This would cause a lot of trouble for future dialysis catheters if he (God forbid) would need it. So, since Max's catheter had two good runs this week he had another suggestion. He wanted us to consider going back to PD (peritoneal dialysis) to see if Max has grown enough to have a different outcome than last time. Remember: Max ended up with extreme pulmonary edema and a chest tube last time we did this. So, I voiced my concern and told him that I didn't want to go back to that unless we absolutely HAD to. He then called Max's nephrologist, Dr. Dixon. He came up and talked to us about his thoughts and let us voice our own concerns. Of course, since I have a very hard time keeping it together at times, I started crying and saying that I couldn't handle the stress that PD caused us and that I couldn't handle anymore chest tubes and respiratory problems. He then stated that Max would have to be admitted to the hospital to be monitored closely if we were to do this and that once he went home he would be on PD for a minimum of 16 hours. I can't tolerate that. I am sorry, but I would rather take him to the hospital 4 days a week for 4 hours than be a hermit in my own home for 16 hours a day. He would also be put back on the cycler and (RCNIC nurses will agree) that machine is the devil. Rewind to last Friday...

...Max's catheter has been giving us trouble for about 2 weeks. We would hook him up and would have to stop him mid dialysis to put TPA in his line to break up the clot so that we could get through the run. Max was loosing about 10mLs of blood every time we had to do this (that's a lot of a baby). So, as we were walking around the hospital for the 45 minute TPA dwell, I came up with an brilliant idea that we should come in an hour early, put the TPA in BEFORE we hooked him up to the machine, walk around for an hour then come back and start. I figured why not try it. So, the nurses and doctors agreed that it was worth a try. Monday and Wednesday were our first days of trying it and it worked! I am so brilliant :o) Fast forward to today...

...my idea is what cancelled the surgery today! I think I should get paid big bucks for my idea! (it was worth a try anyway) So the plan is to bring Max in early every day he has dialysis and do the TPA before he starts. We will see how much time this buys us. Dr. Dixon stated that he feels that if we end up having to replace his catheter he would still rather not go back to PD for the reasons stated above plus he wasn't getting good runs in with it. It wasn't clearing his numbers and we were always getting negative volumes back on his drains. So, now that we finally have everyone on the same page and understanding our concerns we are feeling much better about all of this. We understand that if they can't salvage the same vein that his line is in now, then he may face challenges down the road. Reality is that his new kidney isn't going to last a lifetime, but medicine changes every day, so who knows what will happen 20 years down the road when he may face going through this again. They will be growing kidneys in petri dishes at that point and he may not have to go on dialysis. Long shot I know :o) We can't focus on what 20 years down the road holds at this point. In our opinion, we need to focus on the now so that Max can see his 20th birthday. We will deal with the future when it gets here.

So, that's where we stand. I think I filled you in on how everything went this morning. The bright side is that Max didn't have to have another surgery, everyone is on the same page, Tim got the day off, and MY (mommy's) idea is what cancelled it! Can you tell I am a little proud of myself for coming up with such a simple idea!

Have a great weekend!