To say the month of September is packed full this year is an understatement. We have a slew of appointments happening, which wouldn't be quite as bad if we didn't have to go for the regular x-rays to make sure Judith's bowels are un-dilating and going back to normal, but it's still a lot on top of the numerous plans and activities we have scheduled for the month.
Yesterday, Judith had her annual follow up ultrasound on her kidneys, and an appointment with nephrology. This was to check and monitor the calcification they detected on her kidneys a couple years ago, to make sure things didn't get worse. We knew going into the appointment that if things remained the same or improved, we would be discharged from their services. I was very pleased to hear the doctor come into the exam room and say that everything looks the same, that they will attribute the problems to her prematurity (which apparently this isn't totally unheard of for some preemies), and will be discharging her from services!
If there's 1 thing I like, it's to be able to eliminate and knock a specialists off of the already long list that we see. Especially since I know that the odds of adding more as the CF progresses is high.
The ultrasound was an interesting occurrence, and Judith did spend a fair amount of time during the scan crying and screaming in terror. She had herself convinced that we were "just getting an x-ray," even though I explained that she was getting a different kind of picture taken that used a magic wand instead of a big camera to see her insides. To say she was not amused with the scan is an understatement. All things considered, it went well, but both my mom and I were exhausted because it takes a lot out of you trying to keep Judith still so the techs can get the shots they need.
Coming up later in the month, Judith has her next x-ray, and if that still looks good, we may only have to do 1 or 2 more before we can discontinue them (and hopefully won't need them again for a while). I am concerned by the amount of radiation she's been blasted with since mid-July, including the multiple x-rays she had while inpatient, and will be relieved when she can get a break from all of that.
We also have her annual eye exam, which could prove to be an interesting experience since I know they'll dilate her eyes. But Judith is so excited about being able to get new glasses that it's making me more excited to get her some new frames as well. If I knew we could keep her current frames longer and still have a valid warranty, I'd do it, because they're in really good shape and she doesn't seem to have outgrown them. I can guarantee that I'm getting the same brand, because it has been absolutely fantastic not having to worry about her snapping something constantly and going for repairs every few weeks! The most I've had to take her for were some adjustments to the nose pieces, and in the last year I think I can count on 1 hand how many times that has happened.
Showing posts with label kidney issues. Show all posts
Showing posts with label kidney issues. Show all posts
Tuesday, September 9, 2014
Sunday, September 8, 2013
Appointments
Last Thursday, Judith and I had a long day at Hershey for some of her follow ups. The main reason we went was for her 6-8 month check for her kidneys to monitor the necrocalcinosis. But because of her recent hospitalization, her CF team wanted to make sure that she wasn't backing up again and ordered another abdominal x-ray. I told them that we were already coming for this appointment, so they were able to send the orders to the lab so we could have the scan done the same day. I knew it was going to lead to a long morning of appointments (and basically a long day period when you count the drive), but it was much easier to do everything at once rather than making multiple trips.
Our morning started with an ultrasound on her kidneys. I wasn't sure how Judith would react, especially since we had to go into the children's hospital to get to the pediatric radiology department, but she was surprisingly chill as we walked in and checked her in. Even during the actual scan she cooperated relatively decently. I was able to keep her still enough this time, and we didn't need an extra person to help restrain her so they could get the shots they needed. While we were in the department, we did the abdominal x-ray, and that was a little more traumatic for her, but at least it was over quickly. We then had about an hour to kill before her appointment with the doctor, and I was glad that she was content with my iPod and watching Sofia the First while we waited.
One of the neat things about PSHMC is it's a teaching hospital, so every now and then med students sit in on and participate in appointments. Thursday was one of those appointments, and Judith was examined by a med student first, and then examined by the actual doctor. I was proud of her that she was really good during the med student's exam and didn't pitch one of her more common fits. Anyway, the renal specialist also checked Judith out, and both the doc and the med student said everything sounded good. The doctor was able to read the ultrasound pictures, and the good news is nothing has changed! She said that the ultrasound pics from a few months ago are practically identical, and they want to see that or improvement. If the necrocalcinosis would've gotten worse, then we would have a problem. We go back in a year for another check, and she said that if things still haven't changed (or if they start to improve), they won't need to see her again and will discharge her from their team. Yay!
That was the high point of the day. The bad news is we're right back at square one with Judith's GI issues. Even though we've been giving her the miralax regularly like Dr. G. wanted us to do, her x-ray showed a moderate amount of buildup, and she was full of poop again. When I called the team to see if they had her results and they told me what they saw, I was worried they would readmit her to do a flush with Go Lightly, but they wanted to try flushing her at home instead. Her team's really good about trying to keep the patients out of the hospital as much as they possibly can, so while I was trying to figure out the logistics of dealing with tons of poo on mostly carpeted surfaces. It's been a relatively interesting weekend so far, and we're seeing results but I'm not totally sure if it's what they're looking for. We need to do a repeat x-ray to see if the miralax did the trick, or if we'll have to resort to something stronger. In other words, if there's still poo clogging things up, are they going to want to continue higher doses of miralax at home, or readmit her for closer monitoring and more Go Lightly?
Our morning started with an ultrasound on her kidneys. I wasn't sure how Judith would react, especially since we had to go into the children's hospital to get to the pediatric radiology department, but she was surprisingly chill as we walked in and checked her in. Even during the actual scan she cooperated relatively decently. I was able to keep her still enough this time, and we didn't need an extra person to help restrain her so they could get the shots they needed. While we were in the department, we did the abdominal x-ray, and that was a little more traumatic for her, but at least it was over quickly. We then had about an hour to kill before her appointment with the doctor, and I was glad that she was content with my iPod and watching Sofia the First while we waited.
One of the neat things about PSHMC is it's a teaching hospital, so every now and then med students sit in on and participate in appointments. Thursday was one of those appointments, and Judith was examined by a med student first, and then examined by the actual doctor. I was proud of her that she was really good during the med student's exam and didn't pitch one of her more common fits. Anyway, the renal specialist also checked Judith out, and both the doc and the med student said everything sounded good. The doctor was able to read the ultrasound pictures, and the good news is nothing has changed! She said that the ultrasound pics from a few months ago are practically identical, and they want to see that or improvement. If the necrocalcinosis would've gotten worse, then we would have a problem. We go back in a year for another check, and she said that if things still haven't changed (or if they start to improve), they won't need to see her again and will discharge her from their team. Yay!
That was the high point of the day. The bad news is we're right back at square one with Judith's GI issues. Even though we've been giving her the miralax regularly like Dr. G. wanted us to do, her x-ray showed a moderate amount of buildup, and she was full of poop again. When I called the team to see if they had her results and they told me what they saw, I was worried they would readmit her to do a flush with Go Lightly, but they wanted to try flushing her at home instead. Her team's really good about trying to keep the patients out of the hospital as much as they possibly can, so while I was trying to figure out the logistics of dealing with tons of poo on mostly carpeted surfaces. It's been a relatively interesting weekend so far, and we're seeing results but I'm not totally sure if it's what they're looking for. We need to do a repeat x-ray to see if the miralax did the trick, or if we'll have to resort to something stronger. In other words, if there's still poo clogging things up, are they going to want to continue higher doses of miralax at home, or readmit her for closer monitoring and more Go Lightly?
Thursday, March 7, 2013
Nephrology
Judith had her first appointment with the nephrologist today to check out the kidney stone they saw on her ultrasound when we were checking her liver. The good news is it actually isn't kidney stones, but is actually calcification on the tissue of the kidney. Her doctor said that they see it a lot in preemies, and that she should eventually outgrow the problem! He did order labs to rule out some other things (I can't remember the names of the conditions, but he said that they're really rare in pediatric patients), and did a urine catch to check the levels.
Her appointment was in the same suite in the doctor's office building as the CF clinic, so I was glad that there was a little bit of familiarity for Judith. She did freak out when she saw a different nurse for her vitals, but bubbles helped to distract her, as did her doll. I was impressed that she did relatively well with the doctor since he was obviously a new face. I was really expecting a full meltdown like we saw in the past, but I am so glad that we didn't have that! I think she's finally turning a corner, and while she's still upset, she's starting to cooperate with the exams. At the same time, it makes me a little sad that she's learning this lesson so young, because she has not had a respite from the constant poking, prodding, and exams.
Her weight gain is still really slow. She's 23lbs 14oz, and 33" long. I was hoping that she would weigh a little more, and with luck she'll break the 24lb mark by the time her next clinic visit rolls around in a few weeks. I'm not surprised at her height, because she's been outgrowing her 18m outfits lengthwise. It's becoming a challenge, because 24m and especially 2T pants are too big in the waist and don't stay up properly. They're still a little long lengthwise as well, but at least they're getting some use this winter in the off chance that she won't be able to wear them again by fall (which, I'm kind of hoping, she will be able to wear them again since she's not growing as quickly).
Her appointment was in the same suite in the doctor's office building as the CF clinic, so I was glad that there was a little bit of familiarity for Judith. She did freak out when she saw a different nurse for her vitals, but bubbles helped to distract her, as did her doll. I was impressed that she did relatively well with the doctor since he was obviously a new face. I was really expecting a full meltdown like we saw in the past, but I am so glad that we didn't have that! I think she's finally turning a corner, and while she's still upset, she's starting to cooperate with the exams. At the same time, it makes me a little sad that she's learning this lesson so young, because she has not had a respite from the constant poking, prodding, and exams.
Her weight gain is still really slow. She's 23lbs 14oz, and 33" long. I was hoping that she would weigh a little more, and with luck she'll break the 24lb mark by the time her next clinic visit rolls around in a few weeks. I'm not surprised at her height, because she's been outgrowing her 18m outfits lengthwise. It's becoming a challenge, because 24m and especially 2T pants are too big in the waist and don't stay up properly. They're still a little long lengthwise as well, but at least they're getting some use this winter in the off chance that she won't be able to wear them again by fall (which, I'm kind of hoping, she will be able to wear them again since she's not growing as quickly).
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