Things are not good folks

Max had his VCUG and urodynamics test yesterday and we had our follow up with Dr. Sheldon (urologist) this afternoon. Things didn't work in our favor, to say the least.

I will try to explain all of this information as best as I can so that all of you will understand it. It will get very confusing so bear with me. Here we go:

Max's bladder didn't get any larger with the cycling that we have been doing. This is bad bad bad news. So, Dr. Sheldon went on to say that he doesn't feel that he can do a bladder reconstruction at this point. It's just not safe for Max with him still being pretty little.

After lots of conversations between the urologists, nephrologists, and surgeons it has been determined that we need to restart peritoneal dialysis. They want to do this to stretch out Max's peritoneal cavity to prepare it for a transplant. So the plan is to do a hernia gram (I didn't make that word up). This is when they will put a dye into his PD catheter and watch where it goes by xray. Praying so hard that the dye stays in his peritoneal cavity and doesn't float into his lungs or scrotum like it did before. If this does happen they will do another type of dye study to pin point where the leak is. Obviously, if this does happen PD stretching cannot take place.

Okay, the next step is to reopen Max's vesticostomy so that he can urinate without the high pressures that his bladder creates along with the reflux into his kidneys.

We are in the worst case scenario we could be in as far as the bladder and transplant goes. We are at a very critical point for Max's survival. We are also down to only one option at this point. Remember that they don't want to put a new kidney into a body that doesn't have a good bladder because of rejection risks. Unfortunately, it looks like there is a chance that Max could be receiving his kidney much sooner than we would like. This is where it's going to get VERY confusing. Here we go:

Putting a kidney into a body with a vesticostomy increases the risk of failure for several reasons:

#1 Infection is increased because he has an opening from the outside in (directly
from the bladder into the new kidney)
#2 Rejection risk is increased
#3 blood vessel complications
#4 bladder complications
#5 obstructions (blood clots)

They will have to attach the kidney to the vena cava and the aorta rather than other vessels because of his size. This is very risky. Attaching the new kidney to the bladder will also be very risky because of scar tissue and having the vesticostomy in place.

When they put the kidney in they will have to clamp the vessels they are attaching it to until everything is in place and put together. When they unclamp those vessels A LOT of blood is going to rush to the new kidney. This could cause a metabolic and fluid shift. As soon as they unclamp it they will be pumping him full of fluids and possibly blood. This could also cause a tremendous amount of urine output which could potentially cause over or under hydration and electrolyte problems. They will be monitoring this very closely.

There are SEVERAL risks with this and like I said before this is NOT a good situation at all. Dr. Sheldon said that if Max looses his dialysis access and PD fails Max will not survive. We know that he can't live without the dialysis, but hearing it out loud is scary. This surgery could take place as soon as 8 weeks after his vesticostomy placement which is getting moved up (surgery originally planned for March 31st). I'll let you know when it's rescheduled for.

BEST CASE SCENARIO:
Max's hemo cath continues to work with the TPA dwells that we are doing.

Max doesn't have ANY leaks ANYWHERE throughout his body.

PD stretching works and shows good signs of being able to be used for dialysis as well as the stretching.

IF and that is a HUGE, big, fat, bold, italicized, red "IF" PD works it could buy us a lot of time to get Max big enough to do this transplant the right way. Reconstruction, healing time, transplant, healing time, new life.

Keep in mind that we also have to monitor Max's growth and development skills. If these are not increasing, we will need to move on with the transplant. So we have to keep an eye on three things: acceptable dialysis clearance, increased growth and improved development. If I understand all of this correctly, we can hold off on all of this if we have all three of these components.

Dr. Sheldon had an encouraging story of a little boy from New York who had to have this exact type of transplant. Although he ran into a major complication with an obstruction in the new kidney, Dr. Sheldon was able to remove it and later do an augmentation and he is now doing great.

I keep telling myself that we need to do all of this to prepare Max just in case we have to go down that not so friendly road. We are going to be praying extra hard that PD will or that hemo will continue to work and that maybe we can push this off awhile later. Dr. Sheldon isn't optimistic that PD will work for dialysis and that is why he is getting ready and planning for this. Since we are having access complications, he wants to be ready. I hope I am right about this. I keep doubting myself that this is what he said :o( I will confirm with Dr. Ben on Friday.

Please please please, I am on my hands and knees begging you to please pray that we don't have to do this anytime too soon.

On a much happier note: MAX GOT HIS FIRST TOOTH TODAY!!!!!!!! Those boogers have been trying to come through for 3 months now. A great way to end a terrible horrible no good very bad day.

Stay tuned for the results of my CT angiogram.