Baby with CKD

[caya]

Hello all,
My name is Caya and my son Nicolas was born at 34 weeks via c-section as the doctors believed it could be either Posterior Urethral Valves or a Prune Belly syndrome since at 32 weeks a fetal MRI showed a megabladder and severe bilateral hydroureteronephrosis with a left kidney that appeared dysplastic. The MRI also showed a large abdomen with wrinkles and only one testicule in the scrotum. Once he was born, doctors discarded the Prune Belly syndrome (although recently some doctors said that it could be a mild variant of it). Creatinine and BUN were rampant and the doctors decided to go for a bilateral ureterostomy trying to preserve some nephrons. However, the creatinine continued to climb (between 4.6 and 5.0) with potassium over 6 so the doctors decided to put a Tenckoff to dialyze him when he was only 10 days old. Then, we obtained a second opinion from an angel doctor who stated that the catheter was not necessary and that we should hyperhidrate him.  This advise worked and the creatinine started to go down and the catheter was never used so it was removed 2 months later.
Currently my brave Nico is 8 months old, and has been gaining weight very well (18 pounds) and managing his CKD with various medication with controlled electrolytes.  However, his creatinine that had gone as low as 1.0 in early november started to increase again and we are now at 3.5 with a 64 BUN so we will probably dialyze him soon unfortunately.  He still seems to feel fine so that's why we have been postponing the dialysis but I know we don't have much more time left and that's breaking my heart.  The whole journey started so hard that I thought I was not going to be able to resist it but somehow in the middle it looked like a miracle had happened and I secretely was hoping that my little one would be able to make it to the transplant (22 pounds) without having to go through the dialysis.
It feels now like a huge move backwards having to put him again the Tenckoff and use it.  I am terrified.  And also I am starting to work on Monday and that also scares me very much...  After all the surgeries and several hospitalizations (for starters he stayed 1.5 months at the NICU), Nico has become very sensitive and is very attached to me.
My sister discovered this website and thought that it could help me just share my feelings with a group of people that go through similar processes.... So here I am, just hoping that we can still delay even a little bit more the dialysis.
Cheers,
Caya

[MooseMom]

Oh Caya, what a terrifying experience you've had to endure. 

I am not surprised that Nico has become so attached to you, and I can understand your concern over having to start work next week.

What have Nico's doctors said about transplant?  Is Nico a good candidate?  I have no idea how the waitlist works in Chile; has anyone told you what the wait time might be?

If transplant IS a viable option for Nico that his doctors will aggressively pursue, then try to view dialysis as merely a bridge to transplant.  Without dialysis, Nico would become so ill that he'd be unable to survive surgery.  Dialysis will keep him alive while you both wait for a new kidney.

I'm glad your sister found IHD and recommended that you check us out.  We have many members who can share a lot of information and can offer a tremendous amount of support.  Please post whenever and whatever you wish to.

I'm very eager to hear more from you about Nico.

[Jean]

Gosh, Caya, being a member here I have heard a lot of terrible stories. I think yours is probably the worst.  You have more than enough going on to worry about. I so hope and pray your little guy will be fine and it sounds as tho your Drs. have got it all under control. We look forward to hearing more from you and Nico. At any rate,    to IHD.

[Rerun]

Hi Caya, and welcome to IHD.  I'm so glad your sister found us for you.  You will love it here.  We will try and answer any questions the best we know how which is with the truth.

Try and get him on the transplant list now.  Babies are first with a good match and even if he is small a kidney will shrink or grow to the size of the body it is put in.  I know he is 4 pounds from the transplant weight but get him listed because you may have to jump through some hoops first. 

Thank you for joining.

Rerun, Moderator   

[Poppylicious]

Hello Caya, and  to you and baby Nico! 

Poppylicious, Moderator