Day by Day

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

Friday, February 15, 2008

Long Time No See!

I know, I know, it's been a while since I last posted. I swear, I have the best intentions to do so and then something else comes up.

Things are here have been good. I prayed and prayed that we would get through Christmas and New Years without any colds and my prayers were answered... for the most part. Joaquin started up with a little cough on New Year's Eve and after dropped him off at his favorite place on earth - Grandma's house - every time my phone rang I was worried it would be a call that Joaquin had a fever. Luckily he made it through that cold without any fevers.

Last year we didn't have any colds and his immune system was weaker than it is now and this year we've had about 4 so far and supposedly his immune system in "tough" (in the words of one of the doctors down at the hospital that I recently talked with). While we were out of town last weekend we left Joaquin with Grandma and Grandpa only to receieve a call one or two days into the trip that Joaquin was running a fever. We were about 5 hours away - talk about feeling helpless. So they had to take him down to the ER just to get it checked out. My Mom was saying that he did *not* want to be there and was real quiet the whole time they were there (5 hours!). What I learned from the last fever was that - go figure - water helps to bring it down. So I told her to have him start drinking lots of water, which wasn't hard because he was already asking for water. They gave him a little Tylenol while he was there and that helped to bring the fever down. And there was no hospitalization required from this visit, thankfully.

While we were out of town and dealing with Joaquin having to be in the emergency room, I was talking with a doctor in Palo Alto and he was saying that at this point, since he's so far out of transplant they're not as concerned about fevers as they were in the beginning. That's was news to me. We were so ingrained to the idea that a fever was bad news for Joaquin because of his compromised immune system but apparently his immune system is "tough" - in the words of the doctor. We were not aware that his immune system would ever be considered tough - we've always thought that since he was on immunosuppresants that his immune system was really weak. We still need to take fevers seriously with him, but it's not as serious as it was in the beginning. The doctor was saying that maybe if he had just gone through a bought of rejection in the back 2 months that would be the case but he hasn't had any problems since transplant *knock on wood.* He said that after a bought of rejection they have to give such a high dosage of steroids that it puts the patient back in the same likeness of someone freshly transplanted.

Other than the occasional bought with pneumonia, he's had a couple fevers. It seems like Joaquin is your typical toddler catching every bug and germ that comes within a five mile radius of him. We don't see much of our little (read: toddler) friends because everyone seems to be sick all the time. We get a bit of cabin fever, but luckily Joaquin also has adult friends who aren't sick as much.

We've also been dealing with Prograf woes. His Prograf has been running consistantly low since probably October which means raise the dosage, do a blood draw in two days, see levels are low, raise the dosage, do a blood draw in two days, etc., etc., etc. Finally, the last time we took him we got a dose that was in his range. We think that he's just metabolizing the Prograf differently because he's growing so fast. We saw the doctors in October and then when we went back down again for kidney clinic in January he had already grown 3 -4 centimeters. I can see the growth - shirts that were too big are fitting nicely now. Pants that were too long fit. It's so awesome to see that the kidney is doing him good. He also eats like a little horse. Sometime when we go out to eat, he can eat more than me! It seems like he's constantly snacking throughout the day - which I suppose toddlers are prone to do.

Joaquin is still wearing the ng tube. We are probably looking at another year with it. He needs to be able to drink 1.3 liters and right now he's average about 300-400 mL per day. Some days he has good days where he drink half or a little more than half of his daily requirement and then there are days when he just his 300 mL. Progress. He's very sensitive about his ng and if he notices that it's coming loose he'll let me know right away. For as much as we loathe it, it's a part of him and has always been. He doesn't know otherwise. Soon he will.

Joaquin is a great big brother and Sage adores his big brother. My Mom says that he's the most un-jealous big brother she's ever seen. He's never rough or mean towards Sage. He's very kind and loving and gently with him and Sage lights up whenever big brother comes around. Having Sage is such a different experience than Joaquin. Sage is much fussier than Joaquin - for all the Joaquin went through he really was a great baby. Very mellow and easy going. There are times when I'm picking Sage up and taking him to another room late at night or we're running a late night errand and I'll think, I never could have done this with Joaquin cause he would have been on dialysis. And dialysis seems like such a distant memory.

I've included some pictures to share.

Joaquin's first time sledding - he didn't know what to think of it!

patio furniture store
patio furniture store