May 6, 2009

What a champ!!!

Max ate his entire feed from his bottle this morning!!! How stinkin cool is that? Well... I am excited!

I have a few new things to report on. First one is Max's BUN (Blood Urea Nitrogen). It has been very elevated pre dialysis, so the doctors were starting to wonder if his catheter was recirculating. Meaning that he was only getting a small volume of his blood cleaned due to that small amount of blood recirculating in the catheter. Does that make sense? If I had no idea what I was talking about I wouldn't get it either. I am trying to think of how to explain that better and I am coming up with nothing, sorry :o(

Anyway, they tested to see if this was the case on Monday and thankfully it isn't. If this was the case, he would need a new catheter. What they think it is, is that since Max has grown a LARGE amount in the past month he has officially outgrown his kidneys. Although this is a bad thing, it was too be expected. So, how do we fix it? They add time to Max's dialysis treatment. So instead of 2 1/2 hours, he is on for 2 hours and 45 minutes. The bigger he gets, the longer he will need to be on the machine.

Max has been gagging with his puree feeds, so his speech therapist has ordered for him to have a swallow study done. This will take place next Wednesday the 13th. I'll keep you posted on the results.

He will also be having a nuclear medicine dye study done to see if he has any leaks into his lungs or scrotum. It's basically to make sure that everything is healed up from his diaphragmatic hernia repair. If he is leak free, they are going to let him enjoy his birthday party and then admit him to do a PD trial to see if we can get his peritoneal cavity to stretch in preparation for the transplant. We are hoping that he will be able to tolerate it enough to get the volumes that he will need to be able to use that as his dialysis as well. I am very nervous about this. I know that it's been almost 7 weeks since the surgery, but I am still nervous that he still needs time to heal. I am also nervous because it has been so long since I have done the PD at home. I am going to need a refresher training session.

Let's see.... I have finally chosen my surgeon that will be doing my part of the transplant surgery. His name is Dr. Tiao (pronounced: T-ow) and he is fantastic. He put Max's current hemo catheter in 6 months ago and it's still working :o) (It may be sluggish, but by golly it's still working). With that said, I have a feeling that he isn't too far from having to have a new catheter put in. It's too be expected, but I hate to see him go through another surgery. This one will more than likely have to go into his subclavian vein, which will eliminate that one for future dialysis use if he is to need it (chanced are he will). It's a bummer, but we can't look that far into the future at this point. We need to focus on getting him to the future, so we will deal with that when/if the time comes.

Anyway, I think that is it. 6 more days and our little boy will be ONE!!!!!

3 comments:

jessicalflores1@aol.com said...

Hi! I'm Jessica, you don't know me but I found you through googling a bit. I also have a little guy on dialysis. He's 14 months old right now and is on PD 12 hours a night. He has had 2 hernias himself and both were repaired and then dialysis started on a low fill volume that same night. I haven't really read your back blogs so I don't know if there are other issues but I wanted to let you know of our experience. Logan's fill volume is 250 at this point and if all goes well and his diarrhea clears up they plan to go up to 300. He should get a kidney in the next 2-3 months though. How awesome that you can give your son the gift of a kidney! Unfortunately I only have one myself and it never bothered me until I had Logan. Anyway, just wanted to introduce myeslf. You have a super cute little one mama!

Jessica

Rachael Schirano \\ Rachael Schirano Photography said...

i cannot believe max is going to be one in less than a week!

jessicalflores1@aol.com said...

Hi mama!

I wanted to let you know that I created a group for moms of dialysis babies. It's not a very active group yet as I just created it and if everyone joins there will be about 5 of us. But, I think it's nice to touch base with other moms that understand what we are going through. I see your email address on there so I'm going to send you an invite.

-Jessica, mommy to Logan