Day by Day

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

Thursday, October 30, 2008


I don't know if it's good news or bad news as the nurse was rather vague on the phone but his creatinine was .6 today versus being .7 yesterday. So it's come down but not as quickly as they would have hoped for. So, erring on the side of caution they're trying to get us in for a renal ultrasound today. She said that his BUN looks good which means he's hydrated so we don't know why this creatinine is up. One thing is that we haven't receieved the Prograf level back yet and if that are high, it could be what it causing the high creatinine.

I don't know. I feel pretty peaceful, although Chris and I are both feeling like we want to crawl out of our skin right now with all the waiting and wondering.

Joaquin is doing good today. I'd say he's close to 100% better than he was while sick. He's playing and eating and drinking. Now if we could only figure out what's going on with his kidney.

I'll keep you updated.

Thank you for all the prayers and love.

Wednesday, October 29, 2008

Stay Positive

Today we received word back from Amy today regarding his labs. We checked creatinine, BUN, white cell count, and Prograf. We won't know Prograf for another day or so but we did learn that his creatinine is a little elevated at .7 when usually it sits around .3 - .4. So while that's not alarmingly high, it is a little alarming that it's elevated since his creatinine has been so steady. Our nurse did not seemed overly concerned, I would even say she sounded calm. His last creatinine on the 13th of October was at .3 so it's somewhat safe to assume that his five day fever could be the culprit. When we went in for labs yesterday his phlebotomist said commented on how he was dehydrated since none of his veins where showing up. Today he said, and I quote, "Well, this is a little better."
So the nurse said that after consulting the doctor, they would like to increase his fluid intake by 500ml or 1/2 a liter. Seems like a lot but when you're willing to do anything to get the numbers where they need to be, it's not so bad. And really, it's not so bad. We have a little 4 ounce cup that we fill and make him drink all at once. It would surprise you how (relatively) easy it is to get the required amount of fluids in. I'm going to wake up a few times in the night and get him to drink a cup, which I'm sure he's not going to be happy about but it's also not a permanent thing. I'm not sure if we're only going to need to tack on an additional 500mLs tonight or if this will need to continue for a while - labs tomorrow will give us a better idea.
So the nurse said that since his last creatinine level looked good, she's theorizing that he's just needing the extra fluids and that it's not rejections. However, if his creatinine does not responde to the extra 500mL's of fluid then there we will move on to the next steps which would be IV fluids and/or a renal (kidney) ultrasound.
Pray, pray, pray that this is just a little dehydration from the sickness and fever. I'm nervous and worried and scared but at the same time I do feel peaceful and also that this is just because of the sickness. All the little pieces of this are pointing in that direction.
We are repeating labs in the morning and should know more by the afternoon.
Thank you for all the love and support today, we really appreciated it.

All The Prayers We Can Get

I sent out a mass email yesterday to lots of you requesting prayers or whatever you've got in you for our Joaquin. I don't mean to be an alarmist; I think I just needed the comfort and support of those who we love and love us. The more I think about it the less worried I am. The more responses I read in return from my email the better I feel.

Saturday morning Joaquin woke up with a fever and red splotches all over his body. I called his Stanford doctors and they were pretty confident it was just a symptom of the virus that he was fighting but since they didn't have him in front of them to confirm this they suggested that we take him in to be seen. Chris took him in and the doctor agreed that it looked viral. The doctor in Stanford that Chris spoke to a day later about this said that it was a good sign that he was fighting something viral along with the fact that the rest of our house was also fighting something as well. The concern with flu-like symptoms and a fever is, of course, rejection because those can be symptoms of rejections - but not always. The doctor said it made him feel good that he had the red splotches along with his flu-symptoms and fever because it all pointed to a viral infection rather than rejection.

Anyway, so that day at the Urgent Care they took a urine sample and saw his urine had some suspect stuff in it. It wasn't a "clean catch," which means that Joaquin hadn't had a shower in a couple of days. Usually when we do a urine sample we take a shower or bath and then clean the area up really good. There have been a couple of times that a urine sample has come back saying he had something in it when really the culprit was a "dirty catch." So Chris brought him home, Joaquin took a shower, we cleaned him up good and we did a clean catch at home and took it back to the lab. They did a urine culture this time, in which means they let the sample sit for 48 hours to see if it would grow anything. In the meantime, the doctors had prescribed some antibiotics that not only are good for urinary tract infections (UTI's) and pneumonia, among other things. After the clean catch was returned we started the antibiotics, just to be on the safe side. Usually, I don't like to do antibiotics "just to be on the safe side" but there were other factors influencing my (and our) decision to start them before we had received the results.

So like I said before, we got a call back from the Urgent Care and they said that the results said "proteus" which is something found in the gastrointestinal tract and is usually uncommon in causing UTI's. What they usually see as the cause of UTI's is e.coli. But they said that proteus was sensitive to the type of antibiotics Joaquin had started taking already and that by now he should be feeling better. And he is.

Naturally, after I got the message from the Urgent Care I started getting worried about what if this is rejection. There is no link between UTI's and rejections. Joaquin's nurse was saying that he probably had a virus and a UTI - a double whammy, so to speak. I asked if they were concerned about rejection and she said, "Let's just do labs tomorrow and we can ease everyone's concerns." Now, Joaquin's nurse has never been very good at easing my fears or making me feel better but there was not an urgency behind getting the labs. They just wanted them done this week or Monday. So we went in this morning for labs.

Every day I'm seeing improvement in him. Every day he's getting off the couch a little more, he's needing less Tylenol, he's eating a little more, he's drinking better. We went in for labs yesterday and they were not able to get any blood so we had to go in this morning again. We were successful this morning, thankfully.

So we will most likely have results from the labs late this afternoon and I'll update everyone then. Thanks again for your love and support.

Friday, October 24, 2008

Holding My Breath

Joaquin came down with a fever yesterday afternoon. I got him into the doctor shortly thereafter just to be seen. Since he had been a little stuffy with a runny nose I was pretty sure that it was viral and the doctor that we saw (his regular pediatrician was off) confirmed those suspicions. He was feverish all night and into the morning. Before Chris left for work at about 5:30am he gave him another dose of tylenol. Joaquin has been doing very, very good at drinking his fluids for the day. He went above and beyond what he needed - which needs to happen since he was running a fever. He's been in good spirits the whole time which puts me at ease a little because the times when his illness has been super serious he was not in good spirits. 

This morning he threw up his meds twice. The first time he did it, it was too soon after taking them so he had to take them again. The second time enough time had passed to where I felt comfortable with not re-dosing. I spoke to the doctors in Palo Alto after the first upchuck who advised me to give him another dose since less than 20 minutes had passed. My Mom said it looked like lots of phlegm so it's a good thing he's getting it all out of his system.

I've just been on borderline panic mode. I just want him to be well. It's always so hard to see your little one sick but couple that with being fearful of rejection... well, it can be nerve racking. We were conditioned from before the transplant about rejection and one of the signs is a fever. Later a doctor told me that it's one of the last symptoms of rejection and since he gets regular blood draws that's not something to be worried about. Then when he got sick back in January while he was staying with my parents  and we were out of town another doctor told me that they  aren't so concerned about fevers this far out of transplant.

And while that's all very reassuring, I'm still so ingrained with fear of rejection. I can understand that it's better to have parents on hyper-vigilant mode but at the same time I'm the kind of parent that wants to know everything about everything. I want to know at what point should we be worried? At what point does it cross from being about the kidney and be about just normal toddler sickies? I understand it will always be about the kidney to some extent but this worry is so hard for me to deal with. I just want to cry about it. I feel like I'm such an instinctual parent but my instinct goes out the window when it comes to Joaquin  being sick. I feel helpless and that's enough to make most mothers mad. I look to Chris to allay my fears - is he really bad? Is this really bad? How do you feel about this Chris, cause I can't tell! 

I mean, everything is alright with him. My Mom said she would call me if something were to go down today and so far I haven't got a call. I just cannot wait to exhale cause I feel like I'm holding my breath! There is like a black cloud hanging over my whole day.  I cannot wait for the fever to go away and for him to be on the mend. Our two hospitalizations last year around this time does nothing to help my current mind frame either but we aren't dealing with the ng anymore either...

I think more than anything I just needed to get that out there. So thanks if you've read this. I appreciate it. 

p.s. ~ Could you send some healing vibes to Joaquin please? Thanks.

Thursday, October 23, 2008

'Tis The Season

The cold and flu season that is! Today marked our first (of hopefully not many) visits to the doctors for a viral bug that Joaquin and Sage are both fighting. Sage has nothing to show for it except his snotty nose - which isn't too snotty. Unfortunately Joaquin doesn't usually escape so easily from colds and flus. He usually ends up with a fever but luckily at this point in the game we don't have to rush to an emergency room. Nowadays we make sure he stays well-hydrated. Right now we're doing 1.5 liters of water, or about 1500 ml's. Yes, we have had to increase it since the last time we went down from 2 liters to 1.3 liters.

On our last visit to Stanford, which was October 13th, his creatinine was up just a tad so they decided to increase water intake. It really isn't too bad having to add that extra 200ml's. There are some days that are harder to get the required amount of water into him but those days aren't that many thankfully. They said that his creatinine was expected to increase as he grows bigger and that will also means he needs to drink more fluids. When I say that he needs to drink 1.5 liters that is not exclusive to just water that can also be other fluids like juices (or the occasional pop -not a whole pop!) We prefer water just because juice tends to be mostly sugar.

We didn't see any of the regular doctors that we usually deal with, we had a couple of doctors who I have never met in person but I have spoken with one of them on the phone. He was actually the doctor that I spoke with back in January when we were out of town and Joaquin was running a fever back in Reno. He was the one who told us that they aren't so worried about fevers anymore as being indicative of rejection. More or less, fevers now just means staying extra hydrated.

Beyond that a few other minor details we really don't have anything major to report from our visit to Stanford. Joaquin is still a wee man at 31.5 pounds and little bro is catching up at 21.9 pounds (yes, we weighed him on their scale at the doctors'.)

We made a little mini vacation out of our trip to the Bay area. We visited some family on Chris's side in Antioch, CA. Keith and Alene have been major supporters throughout Chris and I's life together starting mainly with Joaquin's birth yet we had not met them in person until that weekend. We stayed with them Saturday afternoon, got up on Sunday morning, had pancakes and hit the road.

We drove down to the Santa Cruz area and met up with our friend Kim at a park right outside of Santa Cruz. From there we went to a redwoods tree park and went for a walk. After that we went to the beach. It was a good trip.

I would like to write more but my computer is running so slow so I'm going to end it here. Hope all is well with everyone!

Wednesday, October 08, 2008

Goodbye Summer

We had a great summer. But I'm ready for the fall. Our friend told us about an organic apple orchard so we decided to all go apple picking one weekend day. It was so much fun. I just finished processing them all, so now we have lots of applesauce! I've included pics of our good times. 

We recently had an appointment in Palo Alto this past weekend. We decided to make a mini-vacation out of it so we left Saturday morning and stayed with family Saturday night. Sunday we made our way to Santa Cruz where we met up with another friend. Monday was our appointment. I'll post an update on the appointment and some more pics in the next update! Hopefully it will be sometime this weekend!

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