Update and Ramblings about Lizzie
Lately I have done a poor job of keeping my blog current… sorry. 
In my defense, I am working on a new website (thanks to my dear hubby) complete with a new blog, articles and even a message board. Very exciting stuff. I am hoping to have it up and running within the next 2-3 weeks. I’ll keep you posted.
So, back to updating about Lizzie. Her Nephrology appointment went well. They took a very thorough look at her blood pressure, and found it to be within normal limits. It is much higher than average, but remains just within normal limits. So that was a big relief. I still have some concerns about her blood pressure long term, but I think we are in the clear for now. which is very good news. We will monitor her BP along with all her other stuff.
We did learn that one of her kidneys is working harder than the other 41%/59%, but together they equal 100% which is the goal. It is a little unusual (as most of Lizzie’s complications are) because there is no damage seen to either kidney, which makes you wonder why one kidney is not fully functioning. It doesn’t really matter since the other kidney is making up for it, it’s just another thing to add to the “weird” pile.
Overall a good visit. Not incredibly useful medically, but it gave me the reassurance that I have been needing. It’s just so hard to make decisions about your child’s health, and wade through all the medical stuff. I don’t know, maybe we didn’t even need the visit, but as her mother I am glad we went. I feel much better about her blood pressure with the lower scores and better testing. To me that means a lot… a whole lot.
Another plus was that the Nephrologist also strongly supports the idea of nutrition being an important part of her treatment, which I was glad to finally hear a Doctor say. Most doctors push another drug or treatment and never mention diet and nutrition. I don’t believe it can heal all things, but I think nutrition can support the immune system, help keep yeast under control – even with daily antibiotics, and overall just helps the body to grow healthy.
Over the last few years researching Lizzie’s condition and the health aspects of how the body functions, I have discovered a wealth of knowledge about food and how it affects the human body, including the immune system, the overgrowth of yeast, and constipation. All things that are major parts of Lizzie’s life. So more on that later… it’s a whole different post (or 2).
So we are back to the waiting game. Wait and see. I’m thankful for the chance to have some waiting time, but it doesn’t make the actually “waiting part” any easier. It is nice to have 7 weeks before another doctors appointment, so for now I will remain thankful for an infection free little girl and try to leave tomorrow for tomorrow.
Update after the DMSA scan
So, today was the big day. Lizzie finally had her DMSA scan. We got to the hospital around 8:30 this morning, so that they could give her an IV and inject the reacting agent. The test would be 2 hours later. Of course, things were delayed, but by 11:30 we went back for the testing part. The test was supposed to take about 20 minutes, but instead our little angel was strapped to the table for 2.5 hours. I am always amazed at Lizzie’s level of tolerance. She is an absolutely amazing child. For the first 1.5 hours she was perfectly happy. We had an amazing girl from child life services that kept her entertained with books and bubbles, but by hour 2 she was pretty fed up, and who can blame her? She cried hysterically for about 10-15 mins when she finally gave up and went to sleep. I have to say that I was pretty fed up by that point too. We could tell something wasn’t right, but we weren’t sure if it was a problem with the machine or the results. It was nerve wracking.
We went straight from radiology to our urology appointment where we waited for the results. When the doctor walked in he explained that her kidneys looked good. The function is good, and there is not significant scarring. I was so relieved that I almost missed the “but” that followed.
Apparently there was an “issue” with her right kidney. The scan showed that the kidneys were shaped oddly, and that the right kidney had some areas on the scan that did not look like they should. After our appointment, we would be sent back downstairs for a more in depth renal ultrasound to see what was going on. The urologist explained that her spleen might be lying on her kidney, or that part of her kidney might be “dead” or not functioning. Either way, it was not significant in her treatment b/c the kidneys were overall functioning well, but they needed a better picture of what was going on. After it was all said and done, we still don’t really know what is going on, but we do know that her spleen is lying on her kidney and “bending” it, but we don’t think it has any real consequence.
We also did a bladder u/s and found that her bladder is still emptying well, which is great, but unfortunately her blood pressure was much more concerning. This was her third bp reading in the last few months, the first was high, the second high end of normal, and then today it was really high again. So now we realize that we are probably looking at childhood hypertension. We are waiting to see what plan uro wants to take, and in the meantime I will be spending my nights doing research (as usual). I am really hoping it is something we can manage by diet without medicating, but this is one time I will do what the docs suggest without much question. Bp is not something I want to mess around with.
As for her recurrent low grade fevers, he is at a loss, as is everyone else. Could be immunity problems, could be nothing (hey thanks for your opinion!). As for the constant complaining of her bottom hurting, he thinks it is a combination of bladder spasms and constipation. We have been trying to manage her constipation with a high fiber diet, but he feels it is time to be more aggressive and is insisting on a daily laxative or fiber supplement. I’m a little disappointed about this, b/c it feels a little like a mommy failure, but you do what you have to do. We are hoping that if we can eliminate the constipation completely we will have a better picture about the bladder spasms. I am going to work REALLY hard to keep her off Ditropan for the spasms if possible, simply b/c they have caused her such dehydration issues in the past, and my goodness the girl does not need anymore drugs if we can help it!
We’ve been offered referrals to GI, immunology, and looks like Nephrology now, but what she really needs is a nutritionist. I need to find a way to balance her diet to support her little body. Poor thing now has thrush and a vaginal yeast infection, and her little system is just a mess. Somehow we need to balance a no salt, low sugar, low yeast, no processed foods, and high fiber diet and still get her all the nutrients she needs. It’s getting a little too complicated for me to do on my own! I’m just not that good.
So overall, today was a long day, but a pretty good day. We know her kidneys are working well, and that is by far the most important thing. We have a lot of other issues to work through, but as long as the kidneys are safe, we have a little time to try and work it out. We need to be in a place where things are balanced before we take the vesicostomy down, but until then we work out the kinks. We don’t know what to expect when the vesicostomy comes down, but if we have a grip on all the other stuff, she has a much better chance at success.
Finally, a great uro visit….
Thursday Lizzie had an appointment with urology. I always dread them, and was expecting another appt where I would walk away with more questions than answers, feeling frustrated and sad. Much to my pleasant surprise, I walked away feeling encouraged and strong. For the first time, I feel like we sort of have this under control. Lizzie has been infection free for 6 months, and I feel like we are finally getting a handle on this thing. We still don’t know what this “thing” is, but I’m beginning to understand that we may never know, and that is finally starting to be ok for me.
So here is the progress report:
Kidneys still look good on ultrasound. There is still some swelling in the left kidney (hydronephrosis), but uro is not concerned about it at this time. Blood work looks good, she’s already on antibiotics, and the vesicostomy is keeping the kidneys safe, so for now, no worries, which is good news.
As for the antibiotics, she is still having to take them daily, despite gut and yeast issues, but we have realized this isn’t a fight we will win easily. Too be honest, since she’s been healthy for almost 6 months, I might be afraid to change anything anyway… despite how much I hate the antibiotics.
So now what? Now we wait. Assuming there are no other problems or infections, the plan is to wait 2 years and then take down the Vesicostomy. In order to take it down, we will have to make sure that the Deflux has corrected the VUR (or at least Greatly reduced it), and that the bladder is/can function properly. We will do a VCUG to determine the VUR status, and may have to repeat the Deflux surgery before reversal. We will also do another urodynamics to test the bladder, as well as blood tests, and a DMSA scan.
Once we’ve gotten through all of that, we take down the vesicostomy, cross our fingers, and jump straight into potty training. It will be a rigorous schedule of physically training the bladder, so she needs to be old enough to understand the concept, and get it quickly, which is why we are choosing to keep the vesicostomy so long. Once the vesicostomy is down, she will go from urinating through her belly, to being a “normal” little girl. I can’t imagine how strange that will be for a 3-4 year old. We are hoping to be potty masters so quickly and efficiently that we don’t have to catheterize, but we realize that when you have a ginormous (it needs it’s own word! lol) bladder that you might not feel, and you’ve never really used your hoo-ha, there might be some issues.
If all else fails, and she continues to get infections, we can always put the vesicostomy back in, so we have options. They are not our favorite options, and we feel confident that if anyone can do it, it will be Lizzie. I’ve learned that no matter what, Lizzie will be fine… better than fine. She is a fighter, and a truly amazing little girl. She has surpassed everyone’s expectations in growth and development, and she continues amaze us everyday.
