April 19, 2012

Follow Up

Go Cats!!!

Hello All:

So Tim and I had our meeting with Max's urologist on Monday afternoon.  Surprisingly things went well and we left feeling a lot better about things.  I won't go into full details about what took place between us and the doctor at our appointment, because frankly, it won't solve anything.  But here is what took place at our appointment on Monday...

Max has a repeat video-urodynamics test done last week.  The results showed some improvements.  His bladder will now hold 100mL (30mL equals 1 ounce), whereas in August it only held 75mL.  The 100mL capacity is also not taking into account that there was a balloon holding the catheter in which took up about a 30mL space. The grade II reflux that was going into his transplanted kidney is now gone, which is great, but it can reappear just as quickly as it went away.  With that said, Max's bladder is still small, but doable.  A normal bladder size for a kid his age is 150mL, so he isn't too far off.  Our issue is the amount or pressure that his bladder is in when it is full.  Max's pressures are at 60 and they like them below 40, maybe even 20.  That is why we can't close his vesicostomy safely.  With pressures that high, the urine in his bladder would reflux into the kidney and kill it.  Obviously, the kidney is our top priority, so we will not be closing him up. 

Here is the plan- we wait.  Because there were improvements, we feel that it is best to wait and see if things improve even more with time.    We will repeat testing in 6 months (October) to see if things have changed.  If his bladder has gotten better, we may wait another 6 months to see if we can get it even better, but that will depend on the results.  If things are unchanged in 6 months then we will move forward with the bladder reconstruction.

Remember, we are trying to avoid this bladder reconstruction.  It is a very big, long and nasty surgery that could result in a 4 week hospital stay.  This type of surgery also puts a lot of responsibility on us at home.  There will be a very strict cathing schedule of ever 2-3 hours for the first 3 months and every 3-4 hours after that.  Max will have to cath himself for the rest of his life.  He will also have to irrigate his bladder once a day for the rest of his life to avoid mucus buildup in the bladder.  Max will have a risk of bladder cancer because of the bowel tissue that will be used to make his bladder bigger.  The list goes on and on, but this surgery may be our only option.  We've seen miracles happen right before our very eyes, so we know that with consistent prayer we can avoid this surgery.  We have 6 months to prove that miracles happen more than... well how many times has Max proved this? 

Please pray for a(nother) miracle. 

PS:  We were told once again that kids with a severe blockage like Max had do not survive because their lungs do not develop enough to sustain life.  Somebody was/is looking over our little man.  Somebody who has a lot more power than any of us here on this earth.  Miracle #2.

Once again, the boy is famous :)

April 9, 2012

Moving forward

Hello all:

We are at the point of moving forward with Max's big bladder surgery. He will be going in tomorrow morning at 9:45 for a video urodynamics test. This test will let us know if there is any improvement with Max's bladder since his last set of tests last August. We will find out about the pressures in his bladder when it is full and how much urine the bladder will hold before he empties.

We had a meeting with his urologist in February but we will be meeting with him again on Monday, April 16, to discuss some things that we were unclear of from his last appointment. I will go into more detail after the upcoming appointments.

We have a few prayer request for Max's prayer warriors. Most importantly, we ask that you pray for improvements in his bladder. We are also asking for guidance and patience as Tim and I make some difficult decisions with what step we take next with Max.

Again, I will go into more details once we meet with the doctor again to discuss some things.

Things may start picking up here on the blog as we start moving forward with this process, so be sure to check back every couple of weeks for updates.

Thank you for all of the love and support over the past (almost) four year.