Hey everyone. Yesterday Matthew was scheduled to have a VCUG. (don’t ask me it stands for -Vesico-something-something-Gram) Anywho… what it is, is they put a catheter through his urethra and shoot up some liquid and dye, and they fill up his bladder and take pictures. They also test the pressure of how much urine he can hold.
A little backstory– Matthew has PUV. Meaning there is a blockage in his urethra that connects to his bladder. Urine does not exit out of his penis because of this blockage. This is what cause the urine he was making to expand his bladder and then reflux back into his kidneys. When I was pregnant, it caused a LOT of damage to his bladder and it killed his kidneys. (i will one day discuss about his heart and lungs… but not today) Since he was born, his kidneys were so damaged that it was presumed he never made urine. He was a couple weeks old when they put in a vesicostomy. This is where they cut a small slit in his abdomen and a small hole in his bladder. they lift the hole up to that slit and secure it to where his urine can freely drain. Well, Matthew never peed. Because he was on dialysis, it is a well known fact that a lot of babies who are on dialysis don’t urinate.
BUT…..GOD!! After a year and a half and 12 surgeries later, by the Grace of God, Matthew began to make urine. November 2015 was the first diaper that I saw some *pee pee in his diaper. Not a lot but there was some. And it was amazing. Since November he has been making more and more. I haven’t said anything about it because it was almost like, I didn’t want to jinx it. But I am realizing more and more that Matthew is a special special boy. The Lord has brought him through so much and I need to keep MY promise to God and tell the world what HE has done!!
Since January, I have been dreading the VCUG appointment. I have read and been told that it is a very painful procedure. And as a mama… it’s not something I want to put my kid through on purpose. It’s not fair. But I know to get Matthew where he needs to be, this needs to be done. We have been praying and praying that Matthew start making urine. We have been praying as a family that the Lord continue to heal Matthews body. Let His Will be done. Let Matthew be strong and get healed. Get his bladder working so we can avoid an augment. Make that miracle, Lord!!
Within weeks, Matthew was making lots and lots of urine. So much so that we went from using only one diaper a day (he does do #2 like normal) to now having to change his *pee pee diapers three times a day. It is a beautiful feeling when your son pees on you for the first time. Especially when it is a true MIRACLE!!!
So back to the VCUG. We went to the appointment yesterday. Again… we anticipate uncomfortable and painful. I was calling frantically, ALL WEEK, like a crazy mom trying to get a hold of the urologist to talk about the procedure. You see, Matthew has a full blockage in his urethra. He has a vesicostomy. So, my question was, how are they going to fill his bladder with a vesicostomy?? Why put him through the painful catheter, if the liquid will just come right out through his vesi?? Or will they avoid the catheter through the urethra and do it through the vesi?? I was basically trying to avoid any pain for Matthew at all costs. I didn’t want him to go through something if it wasn’t necessary. Luckily, my persistence worked… for the time being.
We went to the appointment and had the urologist paged. The radiologist tried to do the fill through his vesicostomy. Matthew had to be strapped onto the xray table. He was a little uncomfortable but that was it. The radiologist tried to get the catheter through his vesi twice. She couldn’t get it into his bladder so she decided to give Matthew a break. Matthew was brave and strong and didn’t cry. He flinched a couple times but that was it. Mommy was NOT the one inside the lab with him. Daddy was by his side. Mommy doesn’t like procedures like these. Daddy handles them well though.
The radiologist then called for the doctor to attempt to get the catheter in. He came down and tried twice as well, using two different sizes. He still could not get it. By this time Matthew was uncomfortable and restless. The last two attempts hurt Matthew and he was done. But the doctor decided that he would attempt to go through the urethra and once in, they will “see” how much comes out of his vesi and “see” if they could take the xrays and “See” if they can fill his bladder to full capacity and test it the way they need to… well, this is where the procedure would get more painful and uncomfortable for Matthew. But after so many attempts already, daddy decided NO!! No more “let’s see”!! If you can’t do it, then you can’t do it. We refuse to put Matthew through something painful if there is another option. Especially since Matthew has been strapped to this table for over an hour with four failed attempts.
So… although it was a failure… we think we won this round. Matthew was uncomfortable but not in too much pain. So now, our next option is surgery. Matthew will need to be put to sleep for them to go through deeper in the vesicostomy. During that procedure they will do all that they need to do in one shot. VCUG, Urodynamics, scope of bladder, valve ablation and circumcision. I am very nervous about all that needs to be done… but again… it needs to be done.
I have to say I am so proud of my husband!! He is usually the quiet, go with the flow kind of guy. He didn’t want Matthew to go through any pain either but he is more level headed than I am. If it needs to be done, it is what it is. Me, I am more like.. no.. find another way!! lol. We kind of balance each other out in most cases. But yesterday, he literally unstrapped Matthew and stopped the doctor from doing anything further. I was so proud. That’s something that I would have done. That’s actually something that I HAVE done. lol…
Anywho… so now we wait to talk to the doctor to schedule for surgery. Probably end of this month or in July. EEEk.
To God Be The Glory