Lizzie's Journey
Testing 1...2...3
Yesterday we got the results from Lizzie's last round of testing, and I must admit that I am a little discouraged. I shouldn't be. When all was said and done, most of the results were really quite good, but it's just the lack of answers that gives me such frustration. I was just saying last night that no matter what we found out, at least we would have something concrete to go by.... Who was I kiddin? Lizzie had other plans! Lizzie's original testing showed no response to Candida or Tetanus, so they decided to do some more specific testing this week. The tetanus titers came back this round with some response. It's not an outstanding response, but her body is at least responding to the antigen which is good. Candida (yeast) on the other hand still has no response at all. Her skin test was completely negative. The doctor said she had never seen it, and it makes no sense considering how good her labs have been. The good news is that because the labs are so good, and because she has been infection free for a while, we've been granted some time. We're officially back on the waiting wagon. My least favorite place to be... and yes, I will have some cheese with my whine! ;) We do have some more testing that we will need to do, but our doctor is letting us do it at boo's pace (based on her regular vax schedule and blood work schedule) which is great, because that means less "sticks" for Lizzie. Have I mentioned we love our new doctor? She's great! The hope is that Lizzie can remain infection free, and that her immune system will mount a response on it's own over time. If she gets another infection, the plans will change, but let's just hope we don't need to worry about that. Once again my sweet little angel is making her own way. She continues to grow, develop and surpass all of our expectations in spite her "uniqueness". She's a healthy little girl with a funny disposition, and that's the bottom line. That's all that really matters. It's so easy to get caught up in the medical mumbo jumbo, but my frustrations and discouragement aside (which is no easy task, believe me!) at the end of the day, I know that I am truly blessed. God has big plans for that little girl. Teaching me patience is just the beginning! :) Labels: candida, immunity, testing, Update, vaccine titers
The waiting game is over,,,,, or so we thought
I never know what to expect with Boo. If anything, I’ve learned to expect the unexpected, but sometimes you’re still blind-sided. It just happens, and today was no exception. We were anticipating excellent test results from Lizzie’s most recent blood work. She’s been infection free for a while, and the initial testing was optimistic. Both of her doctors seemed pretty confident that the results would be good, and we had immunology just about crossed off of our list when… we got the curve ball. Lizzie’s immunoglobulin numbers look good, which is great. Her T cells and B cells are both making cells and responding to some infections, but apparently her T cells are not functioning as well as we had hoped. Once again Lizzie is odd man out. Her T cells are not making any response to Candida, which is highly unusual without the presence of certain conditions (which she doesn’t have). This would explain the thrush and yeast infections, but we still aren’t sure why it would be happening outside of those conditions. Chalk it up to another 2% that Lizzie is a proud member of! Lol! So our first step is to have some more testing done next week to see if we can find some more definitive answers. The last test was done with cells in a petri dish, so this time, they will test her skin directly, and she will receive a “patch” that she has to wear for 3 days. This will test how the cells in her body actually respond to the candida. She will also have yet another blood panel to retest her latest results. After that we will move on to the vaccination titers which I am still not happy about, but I am now at least comfortable doing because I know that they are necessary. So how do I feel about it all? Not really sure yet. On one hand, I’m excited to have a wonderful doctor that listens, explains it all and is willing to look for answers. I can’t say enough about how important that is. I’ve always felt like all of Lizzie’s issues are connected, and I think this is one more step in connecting them all. I truly feel like one day we will find the answer. On the other hand, I’m so frustrated. I’m really tired of taking my baby to be a pin cushion. I’m tired of doctors not having answers. I’ve talked to dozens of doctors, done literally hundreds of hours of research, and I know less now than I did when she was 6 weeks old. I’m tired of my baby being “special”. I’d give anything for her to be boring, dull even…. And then I’m reminded of how blessed I am. I have 2 amazing children, both of whom are happy and very healthy considering. No matter how frustrated I am, that’s a pretty big wake up call. It’s like a dear friend of mine said tonight “You’re entitled to the pity party every now and then, you even deserve it. Just don’t ever let it cloud your blessings”. What encouraging words. I do get tired of being the rock, I won’t lie about that. Sometimes it helps just to say “this sucks”. Cause guess what? It does. It’s not fun to see your little one go through so much. But then you pick yourself up, say a big fat thank you that it’s not worse, and move on. If it ends up being a true immune deficiency, Lizzie will be put on another medication to control it. Not our favorite option, but yeah we’re pretty thankful to have the option. Modern medicine is both amazing and frustrating. My goal? To find a balance between the two. Yeah, God’s definitely determined to teach me patience. Labels: immunity testing, immunology, patienced, t cells, Update
Good News and Good Docs
Today Lizzie saw her new pediatric immunologist, and I'm glad to report that the visit went really well. I never know what to expect from a new doctor, and let's be honest, it doesn't always make for a good day. We've had some initial test results for a while now, with no clear explanation of what they mean. For those of you who know me, you know that it's been driving me nuts!!! Super crazy, so I was really hoping for a good doctor who doesn't mind 1000+ questions. Instead, I got 2 great doctors that welcomed the questions. Thank you Lord for teaching hospitals! lol! The doctors didn't get copies of all the right labs, but if I've learned anything along our journey, it's to be over-prepared... so I had a copy for them. :) They went through the labs with me item by item, and explained what each one meant. The good news, is that because she is growing and developing so well they feel like her immune system just needs some time to "catch-up". She has spent so much time on antibiotics and anti-fungals, that her system is just overworked. We are pretty convinced that this is what is making her T cell numbers low, and not an actual deficiency, but we are doing a few more tests to be sure. Speaking of tests, more good news... I think we made the right decision in waiting to do the vax titers. We are redoing the original labs to see if the numbers are still low, but since she has been off of all medication for 8 weeks now (which also means she has been thrush free for 8 wks! woo-hoo!) we may see a rise in her numbers. They are also doing some kind of test to check the actual function of the T cells. As long as the T cells are functioning well, it doesn't matter if they are lower than normal as long as they are not significantly lower. If this test comes back with good function, than we don't have to do the titers at all, which would mean no extra vax'es. Which makes me one happy momma! So overall great news. It's not definitive and really not anything we hadn't heard, but now I understand it and feel comfortable about where we are going. Sometimes that's just as important as the answer. It certainly takes a lot of the worry out of it. We get the test results in 2 weeks, and hopefully we can take immunology back of the list. This will also mean that we are doctor free until December! You heard me right, NO visits scheduled until December, when we see urology again to discuss the take down of her vesicostomy. It will be a nice break before she starts testing again, and I'd say she deserves it. ;) Labels: antibiotics, immunology, t cells, Update
Round And Round We Go
Today's immunology visit did not go quite as I had expected. I was pretty confident that all the results would come back normal, so when they didn't I was a little blindsided. Too be honest, I'm still not sure what to think, but mostly because no one has told me what any of it means. Unfortunately, due to a scheduling problem, the doctor wasn't even there today. Needless to say, I was seriously annoyed that I had just driven over an hour to discuss test results with a doctor that wasn't even there, but for the sake of being polite, I will keep those thoughts in my head. :) Instead I saw the nurse practitioner, and as nice as she was, she really didn't have many answers about the tests. She showed me the test results, and explained how some of the results came back lower than expected. I expected there to be one or two items off, but was surprised when there a quite a few low numbers, some of them significant and some only slightly lowered, with about 25% of the numbers below normal - which also means 75% were normal... :) see that silver lining? lol Apparently low is better than high, which is good, but I still don't know what it means, and she either didn't know, or didn't want to discuss it with me since she wasn't our doctor. She called the doctor who said that he did want to see us, and that we needed to do some additional lab work. He had mentioned from the beginning that we might be doing more testing, so I'm not sure if it is because of the results or in addition to them. After she spoke again with the doctor, she said he wanted to run some new blood work today to test her titers, then give her 2 vaccines, and re-test her titers after 2 weeks. We worked out a compromise so that we would do labs today, and then I could have her pediatrician give her the vax'es on Thurs. Then we would come back for test results and re-testing in 2 weeks. This way, I have some time to research, and it also gives me a chance to discuss it with my pediatrician before we make a decision. We also see our urologist Thurs morning, which is a bonus, so I can discuss it with him as well. As many of you know, I am not a huge fan of vaccines, and because of Lizzie's constant illnesses the first year, we are on a delayed vaccination schedule. So you can imagine my lack of enthusiasm for this method of testing. I will absolutely do it if it needs to be done, but I can't take the word of one doctor that I can't even get in to see... if you know what I mean. I need to know what giving a vaccine to her if she is immunocompromised might mean. I need to at the very least understand it, and at the most just be ok with it. So now it is time for lots of research, and time is a big factor... which stinks. I hate to be rushed. If any of you have done any medical research online, you know that Dr. Google is full of gloom and doom, and you have to be careful how much you read. It takes time to navigate through it all without being totally overwhelmed, especially when you are as clueless about a subject as I am this one. I just didn't expect to be here. And now that I am, I have some catching up to do. At this point, we really know nothing. We don't know what the tests mean, or how concerned we should be about them. She's only 2, so her immune system is still developing and may still make some adjustments (especially now that we are off the abx) or we could be facing something more serious. We just don't know right now, and man that is hard. I think that is always the hardest part for me.... the not knowing. My imagination is sometimes much harder to live with than the truth. I long for the day that we can say X is what is wrong with Lizzie, but I also have a lot of fear about what X will be or what it will mean for her future. The good news is that she is still growing and developing well, and that gives me all the hope in the world. She is a healthy, happy little girl, so I still feel really confident that in the end this will come out with positive results. Maybe it is just God's way of teaching me a little patience ;) Labels: immunity testing, immunology, Update
Moving Right Along
Things around here have been medically dull, which makes me incredibly happy! We've had 2 normal weeks with no doctors, no fevers and no thrush. Oh happy days!!! This week it's back to the grind, with a few doctor's visits scheduled, but we are expecting all good reports. If everything turns out as planned, we are hoping to get a 6 month all clear. *crosses fingers* We've never been more than 12 weeks without some type of appointment, so 6 months would be pretty cool. I'd love to be able to give her an extended break before we start over with all the heavy duty testing next spring. I really enjoy talking with other parents, and by doing so, lately I've realized how truly lucky we are. I hear so many parents talk about the fears that their children have when undergoing procedures, and how traumatic doctor's visits can be. I'm so thankful that Lizzie doesn't have those fears. She loves her doctors, and it has simply become a part of her life. Too be honest, her "medical expertise" has brought a lot of humor into our home. Here's a few examples: Lizzie got a toy medical kit recently, and man has she had a ball. The very first day, she got it out and immediately went to work "doctoring" herself. I watched her giving herself a shot, and was amused when she kept pushing it over and over. A minute later she brought it to me and said, "mommy this one's broken, it not work", I said sure it does, and I pushed it in and out and showed her on my arm. She tried again, and said, "nope this one don't work, it don't hurt the baby. I throw it in the trash.". LOL! I'm not sure what was funnier, her distaste for a shot that didn't hurt, or the fact that she was intentionally trying to wound herself with a toy shot. We live in the country, so we don't see a lot of suit and ties around these parts. When big brother put on his tie for a date night with mom, Lizzie jumped up and down clapping saying, "look brother's a doctor!". Now anyone in a tie is a doctor, and she insists on wearing one herself when playing with her kit. Last week she discovered that her bunny rabbit had no belly button. She immediately ran to get her medical kit so that she could do "surgery" to fix this problem. I asked her why he needed a belly button, and she informed me that "he needs to go pee-pee mama". Talk about bitter sweet. I loved watching her interact with that bunny, assuring him that it would only hurt for a minute, and that she would make him all better. Not only does it remind me of what she has been through, but it also shows me a glimpse of who she will become. She will understand that everyone is different and wonderful in their own way, and that we should offer comfort to the people in our lives. What an amazing thing to be able to pass along to your children, the ideas of acceptance and compassion. I'd like to say I would have passed on those traits regardless of our journey, but having been down this road, I have a better understanding of what those words truly mean. It's amazing how much we learn from our children. Labels: humor, Update
Update on Lizzie Boo
Today Lizzie boo had an appointment with urology and we had another good visit.  We were really hoping that we would get the “all clear” for 6 months but I can’t complain about the 3 months that we got. Lizzie actually likes going to see her doctors and is incredibly patient with it all. She loves visiting the trains on the first floor of the hospital, and it’s a rare treat for mommy to hand out suckers willingly. She gets lots of attention, lots of stickers and lunch out with mom. What more could a girl want? The big news is that we are taking her OFF of the antibiotics. She has been on them since she was 6 weeks old, and we’ve had mixed (mostly bad) emotions about the use of them all along. We are finally taking her off of them, and to be honest I once again find myself with mixed emotion. Both her pediatrician and urologist agree that there could be some type of immunity problem at work, due to her multiple and unusually persistent infections - first the UTIs and now yeast. Apparently it’s unusual to have 4 billion infections before you turn 2!!! lol We decided that changing her antibiotic would probably have little effect since she is currently on Bactrim which is not commonly known to cause yeast (especially at the dosage she takes). The new plan is to take her completely off of the antibiotic and see what happens. The hope is that the antibiotics are to blame for the yeast, and that by taking the abx out of the equation, the yeast will go away. If it doesn’t help, then we will know it’s an immunity issue, and we will see the immunologist and have some new tests run. It might be better to go straight to immunology, but I hate to put her through more testing and more doctors unless I have to. This gives us an opportunity to get her off of the antibiotics (which we have wanted to try all along), and in the long run I feel like that is what is best for Lizzie. We can always put her back on them, but we may not have another chance to get off of them. If the yeast goes away we will know that it was caused by the antibiotics, and we can put the immunologist on the back burner for a while. I am a little concerned about the chance of infection that this could create, but I’ve done a lot of research on the effectiveness of abx for reducing UTI and I’m not convinced that abx are at all helpful. They certainly didn’t keep her from getting the infections before the vesicostomy. I do worry about the fact that because she has taken them her whole life, that she has no natural immunity to any bacteria. I am glad that we are doing the trial in the spring and not the winter. Hopefully this will give her immunity some time to build before being hit with the nasty winter bugs. We also discussed the time-line for the vesicostomy. Talk about a tough decision. He has given us the “go ahead” for taking it down at any time, which was a complete shock to me. The other urologist that we spoke with said his earliest recommendation would be age 4. Our current uro said that he would be willing to do it at any time, but that his recommendation was for sometime next summer… It was our decision. I laughed and said how about when she’s 10? Are you kidding me? I can’t even begin to face the reality of taking out the vesicostomy… I’m so not ready! And I don’t think Lizzie is either. She has adapted well to it, and I think she needs additional time to grow especially now during a period we are pretty sure she will remain healthy because of the vesicostomy. The vesicostomy has kept her healthy and growing, and while we are completely optimistic, we have no way of knowing what will happen once the stoma comes out. She could be facing recurrent infections and more surgeries if things don’t go as we hope, so I’m ok with giving her some more time to be a kid. The testing will start with another Urodynamics study (probably this fall or winter). This should give us 2 very important pieces of the puzzle….how big her bladder is, and whether or not she still has reflux. We are hoping that over time her bladder will have reduced in size and that the function will remain good. We can’t know all the details about the function until she’s older, but the test will give us a pretty good idea about what is going on and how it is going to work. I get the impression that they are figuring on the bladder still being enlarged, and we may end up having to catheterize her (at least temporarily) in order to keep her bladder empty. The problem with this, is that by catheterizing, we introduce bacteria into the bladder, which can often lead to UTI which will be dangerous if the reflux is still present. So the second big question is whether or not she still has reflux. This is the most important thing, and the most worrisome. The urodynamics test won’t tell us the grade of reflux, but it should let us know if the reflux is still there. If so, it sounds like we will do another VCUG to determine the grade. If the reflux is gone, we are in really good shape. If the reflux is still there (especially if the bladder is still enlarged and the grade is high) she will probably be looking at an additional surgery, either another reimplantation or another Deflux injection. The risk of infection is just too high when cath’ing with reflux. Which would take us to another hard decision that we hope we don’t have to make… do we do surgery A that already failed miserably, or surgery B that has also been a complete failure? Personally I am voting for letter C which assumes the reflux is gone and we don’t have to worry about it. I suppose we will climb that mountain when we get there. On a more positive note, her blood pressure was good today, which is a big step in the right direction. After getting the report from the Nephrologist, I still have some concerns, but we are monitoring it closely. The doctors feel she is at risk of hypertension, and it may be something we have to deal with in the future, but that we probably won’t have to worry much about it until possibly her teens (if we ever do). The goal now, is to just have some fun and enjoy some time off. We got the ok for Lizzie to swim and play in the creek which will make for a really fun summer. The kids have been begging to get in the creek and this will be exciting news for them (especially big brother). We’ll of course be watching for signs of infection, but we feel pretty good about the way things are going, and we plan to just live it up this summer and be thankful that we can Labels: antibiotics, April, Diapering vesicostomy, Lizzie, take down, Update, yeast
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Lizzie's Journey
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