Day by Day

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

Thursday, February 08, 2007

Long Time

Yet again it's been a while since I've posted. A friend emailed recently and said how she missed the updates but figured that no new is good news and that is definitely the truth.

We had our last xenopax infusion on Monday, February 8th. No more IV's unless something comes up where he would require one, but that doesn't seem likely. We also did our first blood draw in a month; that's right - no pokes for a month. But it was only because of a miscommunication between the doctors and us. I guess we were supposed to recheck his Cellcept levels in two weeks but it was never clearly stated and we just went with it because we really felt he needed the break. At some point Chris and I questioned why they would let us go that long without blood draws and decided that in the future, until we are farther out, we would do one every two weeks.

So I was nervous as usual because clinic appointments always make me nervous and we hadn't had blood work done in a month. But Joaquin was thriving, eating well and seeming like a happy little toddler. But, a few days before we went down he started exhibiting some signs that something was brewing along the lines of a cold. He had a clear runny nose and dark circles under his eyes and a sore bum. When I looked up the dark circles under the eyes, the search led me to possible food allergies. So we were thinking maybe it was a food allergy. He had diarrhea as well.

The xenopax went off well and the lab results returned saying that his creatinine and BUN were great. But, his liver number were elevated - which could mean a few things: namely a cold or an inflamed liver due to the meds he is taking. It made sense that he would have these elevated number since he seemed to have a cold or something but they wanted to do an ultrasound of his liver and kidney "just to play it safe." I felt it was unnecessary, but it was done anyway. Long story short, his kidney and liver looked fabulous.

So we return home from Palo Alto on Monday night late because they wanted to give him some fluids intravenously since he had an IV in already and he seemed a little dry. Then they wanted to do the ultrasound - which wasn't scheduled until 3 pm. We didn't end up getting the ultrasound until around 4 pm.

The next day he's beginning to feel a little warm. I check his temperature and it's 99.1, which doesn't concern me since he's got two teeth coming in (the last two!). A few weeks back Joaquin had a gnarly looking rash around his diaper area and so I called his pediatrician's office and found out that he was not there anymore. Through the grapevine I found his new number and office location and decided to call to make sure that we could continue seeing him since I really like him and he knows Joaquin. Fortunately we could still see Dr. Shaji and at the end of the conversation with the receptionist she asked if I would like to schedule an appointment and I decided that it would be a good idea since he had a cold and I wanted to ask some questions about possible allergies.

Well, I'm thankful I made the appointment. On Wednesday morning he still had a little fever and he was getting progressively warmer. He was also very lethargic and I could just tell something was wrong. So we went to see Dr. Shaji. The nurse took his vitals and his temperature was 102.6! This was very alarming for me since the last time had a temp like that he had the UTI. I wasn't really worried that it was related to his kidney or anything since he had symptoms like a runny nose, gunky eyes, cough, and diarrhea - plus all his lab number looked wonderful.

I sat in the room for an excruciating amount of time waiting to see Dr. Shaji. I was holding Joaquin, who was like a rag doll and practically sleeping in my arms, which is very uncharacteristic for him. I was preparing myself to have Joaquin hospitalized - telling myself that just a few days wouldn't kill me, that we'd get through it. Dr Shaji comes in and asks me a few questions. I tell him about the symptoms and the first thing he does is check his ears. "Aha." He says, "It's an ear infection." What a relief. A relief because we nailed the cause of the fever and hence the infection immediately. He told me he would write me a prescription and have me out and on my way. I try to make the most out of my five minutes with Dr. Shaji, would have liked to talked about allergies with him because I think that it might be a culprit, but he was far to busy. Too bad.

After that I bring Joaquin home and give him a small dose of Tylenol to help the fever. The nephrologists have always told me to not treat the fever with Tylenol right away because it masks the cause of the fever - an infection. It's important to find out the source of the infection. I layed Joaquin on the couch and called our good friend Mitch to see if he will come over and watch Joaquin for a few minutes while I run and pick up the prescription so that I can just let him rest and not haul him around. Joaquin sleeps the rest of the afternoon and finally wakes up around dinnertime to eat a few crinkle cut french fries with us.

Today he's feeling a little better, still a little warm, but improving. He's been sleeping a lot and is still pretty lethargic. He's been even more of a snuggler than he usually is. I love it, but I also wish him a speedy recovery.

Otherwise, things have been great with all of us. Joaquin is two teeth shy of a full set of chompers. He's communicating better with us through sign language and his ever expanding vocabulary. When he's hungry he will say "nummy nummy" while rubbing his belly. He says, "b-ball" for football and basketball and will say it if he sees one of the sports on TV. He says "apple" for most fruits except for bananas because those are obviously "nanas."

His appetite has been great up until catching this cold or whatever it is. His favorite snacks are goldfish and he likes cereal. He's also a fan of eggs and burritos. And now he likes french fries with ketch up.

We've been trying to do more things with other children because he really like interacting with other little ones. I took him to a playdate in Truckee recently and there were tons of little kids but he was way more interested in hundreds of balls that were at the play center. He was just running around and picking them up and showing me while saying, "ball!"

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