Jane's bladder
Its been a while since I've updated on Janes health. Honestly, things have been going pretty well. I felt like we finally "got a break" from all the doctors and tests. Of course we still had our followups every few months, but for the most part things slowed down and we got to feel "normal" We were enjoying having Jane home with us and doing things with her.
One of the new specialist we started seeing was a urologist. When I was still pregnant with Jane and I met up with the team of surgeons. They told me of a possible complication; that when Jane gets older, she'd have a hard time controlling her bladder. So of course we knew their was a possibility, but I never expected it to be like this.
We met up with the best urologist in Tacoma, Washington. He recommended we ran some test to check how her bladder was working. The first test was the Urodynamic Test. It was one of my worst experiences ever. I won't go into all the details but Jane was so traumatized; till this day I feel guilty I didn't stop the test earlier. It was the set up, Jane had to be tied down to this board, she wasn't fully sedated. It was the staff and how they were unable to do the test successfully and ended up torturing her; asking if they could try again. They would call another doctor to try but he wasn't successful either. So we went through all that and the test was inconclusive. I was furious. A few weeks later, I got a call from the Urologist and since this test was unsuccessful, he wanted to do a cystoscopy. Its a thin tube camera that the doctor uses to see her bladder. For this test, Jane had to be in the operating room and under general anesthesia. This test went by fast and calm. Jane handled everything very well. The doctor came in to talk to me about the results right away. He explained that Jane's urethea curves and therefore no one was able to get the catheter in.(thats why the Urodynamic test was unsuccessful) He also said there were so many other problems with her bladder that he wouldn't be able to do anything. He said Jane needs to be referred to Seattle Children's Hospital to see the urologist there and that she wouldn't need a team of doctors.
It was a 6 month wait to see a urologist up in Seattle. However Jane was considered a an urgent patient and they were able to fit us in for the day after Christmas. I had my husband come out for that appointment with me. He knows more about medical stuff then me. So I knew he'd ask the right questions. We met with the doctor, he looked over the notes and images from our doctor in Tacoma. He suggested we do the same test, Urodynamic and Cystoscopy. You can imagine my reaction when I heard that. We had such a horrible experience, I wasn't going to put my daughter through that again. He insisted she would be FULLY sedated and that they have the BEST doctors that can put the catheter in her. My husband said okay, however I left that meeting not okay with it. But I had time to pray about it.
Jane went through the procedure at Seattle Children's hospital. Not even half way through it, the doctor came out to get me. She only did the Cystoscopy and informed me that Janes bladder is tiny. The size of a quarter. She told me that there are a lot of issues and that she doesn't recommend us going through the rest of the test. So we didn't. But it left us with a lot of questions. Where do we go from here? What does that mean for Jane? A few weeks later we came back to see the urologist in Seattle. He informed us that Jane will need a reconstruction surgery for her bladder. Its a long and complicated surgery and not a guarantee it will work or help. He told us that we have time to think about it. Jane was too young to go through a surgery like this. We'd have to wait till she's around 5 years old. So the last year in a half we have been praying and dealing with all her UTI's. She gets them often. We've been trying everything to maintain them, but honestly its tough to stay onto of things and after a while, her body gets used to whatever herbs or vitamins she's taking and it stops helping. We've done our research on the reconstruction surgery, got second opinions. We are taking it day by day, praying to God to give us wisdom to make the right decision for Jane. It's tough to be the one to make that decision. But we've seen Gods blessing through this as well. We've been trying to potty train Jane (its hard for her she cant control her bladder) but there are good days and bad days with potty training. It amazes me to see her actually ask to go to the bathroom and she goes a lot; as if her bladder is bigger then a size of a quarter. So I don't know if doctors just don't fully know Janes anatomy because they never did all the FULL test or I'd like to think, its Gods miracle. His hand in all this. His timing. His mercy over Jane. So were continuing to put our trust in Him and let Him lead the way. I don't know which path we will take, but we will go whichever way God leads us to.
One of the new specialist we started seeing was a urologist. When I was still pregnant with Jane and I met up with the team of surgeons. They told me of a possible complication; that when Jane gets older, she'd have a hard time controlling her bladder. So of course we knew their was a possibility, but I never expected it to be like this.
We met up with the best urologist in Tacoma, Washington. He recommended we ran some test to check how her bladder was working. The first test was the Urodynamic Test. It was one of my worst experiences ever. I won't go into all the details but Jane was so traumatized; till this day I feel guilty I didn't stop the test earlier. It was the set up, Jane had to be tied down to this board, she wasn't fully sedated. It was the staff and how they were unable to do the test successfully and ended up torturing her; asking if they could try again. They would call another doctor to try but he wasn't successful either. So we went through all that and the test was inconclusive. I was furious. A few weeks later, I got a call from the Urologist and since this test was unsuccessful, he wanted to do a cystoscopy. Its a thin tube camera that the doctor uses to see her bladder. For this test, Jane had to be in the operating room and under general anesthesia. This test went by fast and calm. Jane handled everything very well. The doctor came in to talk to me about the results right away. He explained that Jane's urethea curves and therefore no one was able to get the catheter in.(thats why the Urodynamic test was unsuccessful) He also said there were so many other problems with her bladder that he wouldn't be able to do anything. He said Jane needs to be referred to Seattle Children's Hospital to see the urologist there and that she wouldn't need a team of doctors.
It was a 6 month wait to see a urologist up in Seattle. However Jane was considered a an urgent patient and they were able to fit us in for the day after Christmas. I had my husband come out for that appointment with me. He knows more about medical stuff then me. So I knew he'd ask the right questions. We met with the doctor, he looked over the notes and images from our doctor in Tacoma. He suggested we do the same test, Urodynamic and Cystoscopy. You can imagine my reaction when I heard that. We had such a horrible experience, I wasn't going to put my daughter through that again. He insisted she would be FULLY sedated and that they have the BEST doctors that can put the catheter in her. My husband said okay, however I left that meeting not okay with it. But I had time to pray about it.
Jane went through the procedure at Seattle Children's hospital. Not even half way through it, the doctor came out to get me. She only did the Cystoscopy and informed me that Janes bladder is tiny. The size of a quarter. She told me that there are a lot of issues and that she doesn't recommend us going through the rest of the test. So we didn't. But it left us with a lot of questions. Where do we go from here? What does that mean for Jane? A few weeks later we came back to see the urologist in Seattle. He informed us that Jane will need a reconstruction surgery for her bladder. Its a long and complicated surgery and not a guarantee it will work or help. He told us that we have time to think about it. Jane was too young to go through a surgery like this. We'd have to wait till she's around 5 years old. So the last year in a half we have been praying and dealing with all her UTI's. She gets them often. We've been trying everything to maintain them, but honestly its tough to stay onto of things and after a while, her body gets used to whatever herbs or vitamins she's taking and it stops helping. We've done our research on the reconstruction surgery, got second opinions. We are taking it day by day, praying to God to give us wisdom to make the right decision for Jane. It's tough to be the one to make that decision. But we've seen Gods blessing through this as well. We've been trying to potty train Jane (its hard for her she cant control her bladder) but there are good days and bad days with potty training. It amazes me to see her actually ask to go to the bathroom and she goes a lot; as if her bladder is bigger then a size of a quarter. So I don't know if doctors just don't fully know Janes anatomy because they never did all the FULL test or I'd like to think, its Gods miracle. His hand in all this. His timing. His mercy over Jane. So were continuing to put our trust in Him and let Him lead the way. I don't know which path we will take, but we will go whichever way God leads us to.
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