Day by Day

A mama blogs the journey to transplant and beyond...

Wednesday, December 31, 2008

Another Bump In The Road

I'm going to just copy and paste the email I sent out last night since we are rather busy around here but I wanted to update and let everyone know what was going on. We still haven't heard from his nurse in regards to scheduling his biopsy. Chris and I talked about it last night and we are willing to go down at any time. We would prefer it to happen right now so we know what's going on and we're not in suspense. We both are very hopeful about everything. I turned to Chris last night and said, "Why don't we pray that when they go in and take the sample they don't find any antibodies at all anymore. We can pray them away!" So that's what I'm praying for. Here's the email from yesterday:
As much as I don't want to be writing this I am. We got a call today from the doctors in Palo Alto that Joaquin is going to need a biopsy. They performed a donor specific antibody test (just a blood draw) that shows he's got them which means that if they are not already attacking his kidney, they will. They do not know if he is have a case of rejection yet, the biopsy will let us know. We don't have a date scheduled yet but it will hopefully be in the next couple weeks.
The courses of treatments are relatively simple. If it's showing he is not having any form of rejection, we would his current dose of cellcept. If he is mildly rejecting then we would give him an intravenous IVG which would wipe out the antibodies and if it's worse than that there is another medication they would give him. This is not acute rejection which means he will most likely not need steroids, just meds to wipe out the antibodies.
I feel peaceful about it. I feel like we will at the most need an IVG - which is not bad. In order to do a biopsy he will need to go under general anesthesia and they will pluck a small sample of his kidney. It's not something that requires him to be hospitalized overnight. If everything goes as plan we will need to go in to do the biopsy and then he'll be released. Please send us positive results and overall kidney healthiness. All of your prayers and those you've contacted to pray for us have worked. I'll let you all know when we know more. I'll update the blog. You can pass this message along to anyone you wish. In fact, we would appreciate it.
Joaquin is doing really good. He's acting healthy and he's eating and playing so we take that as a good sign as well. But at the same time if he has this donor antibody thing going on it's a slow way to kill the kidney, it's not something as obvious as acute rejection which would be fever and pain or tenderness over the sight of the kidney. That's why it's so important to get in there and figure out exactly what's happening. We've been looking forward to getting down there but since we got the call last night we are even more anxious. It couldn't come fast enough.
Here's wishing you all a great New Years Eve!

Monday, December 22, 2008

Gallbladders, Stitches, and Such

We've had an eventful week around here. First off we did an abdominal ultrasound on Tuesday or Wednesday (in mommy world the days just blend together) and then on Friday Sage got his first set of stitches!

The abdominal ultrasound was because his liver levels were a little high and it could be caused by one of two things: 1) a gallbladder blockage; or 2) growth. I personally think it's growth. The kid has been eating non-stop. And remember how they wondered why his creatinine had gone up a little? Well, there you go. Everything is pointing to him growing down to his favorite basketball sweatshirt becoming a three-quarters length shirt. We haven't heard anything back from them yet about the ultrasound but I'm really not worried. Amy, his nurse, told me that they are just playing it extra safe, like they always do.

Otherwise, he seems to be doing really well. There was a while there where he looked a little pale and I was wondering if this was because of low iron levels or just his natural skin tone. They had checked his iron levels back in October at my request and said they were fine. On the last big panel of blood work they suddenly wanted to prescribe him iron. So I don't know if they just missed the ones in October or it was declining or what.

So then on Friday, Sage is playing near Grandma and Grandpa's fireplace hearth and fell while grabbing for a book. I was out of the room when it happened but I heard "the cry" - you know, the one where you just know they are hurt. I race out to the living room and even from down the hall I see the blood and I just know that he's going to need stitches. Grandpa was right there and blood is dripping down and I run to get a paper towel so we don't have a big mess. Oh man, it was deep. So deep. He cried for a couple of minutes and I'm just getting myself ready to go to the urgent care. Joaquin was a little scared and cried a little but we all reassured him that brother would be fine and by that time Sage wasn't crying anymore.

Mom came with me to the urgent and when the doctor came in he told me that he could do stitches but that he knew how kids freak out and since it was on his face he wanted me to the emergency room because they would have better skills and more hands to hold him down. Turns out that Sage was really pretty mellow. They put some cream on his head that had to sit for 45 minutes and by the time they got around to stitching him up he was sleeping. I think he was more angry about having to be held down more than anything. The doctor did a great job. We thanked him. When they told us we would have to go to the emergency room I was thinking this would be a long time since they are notorious for long waits, but the total time spent from Grandma and Grandpa's house to the urgent care to the emergency room was 3 1/2 hours. I think that we probably would have been fine doing the stitches at the urgent care but none of us knew how Sage would do so I'm fine with our decision to go to the emergency room. I didn't end up needing to give Sage any pain relief. He seemed fine and not in any pain. So now he's got 3 stitches and a nice scar on his left temple.

Other than those mini-dramas, we are gearing up for Christmas and New Years! We are excited to spend time with our family and friends. We plan on just staying in Reno and having the Martin traditional chili and clam chowder (although the Martin tradition is usually oyster stew - same same, right?). Now that my parents are out here we plan on making our own family traditions so clam chowder it is! We'll keep the chili because almost everyone, no make that everyone, is a big fan. Especially my chili. Sorry Mom! But your chili was my chili's muse.

Happy Holidays to you and your loved ones!

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