It looks as though we finally have an answer for Devyn. I hadn't heard back from the Dr. yet, so I called yesterday afternoon and left a message. I was trying really hard to be patient and praying lots of, "Okay, I'm just going to be really patient and wait", prayers. Then I couldn't take it anymore. I was sure they forgot about her, didn't know how to tell us some awful news or something terrible was going on. I'm a worst case scenario person. I can come up with some really crazy stuff. I didn't hear back until this morning.
The nurse in the GI office was the one who called me and said that the kidney specialist thinks she has renal tubular acidosis. What now? I have no idea what that is. The GI mentioned it and I tried to read about it and then got confused. I asked the nurse if this is something serious and what that means. She said it's better to wait and talk to the kidney specialist. Of course. She then transferred me to the scheduling department to make an appointment with the kidney specialist. Of couse since I think my children are the most important people to walk to planet I figured they would get her in like tomorrow, or next week at the latest. May 1st. May 1st!!! I have to wait until May 1st to find out what is wrong with my child?!? I asked if that was really the soonest they had. Yes, it was. She suggested talking to the GI office again and asking if this was serious and she needed to be seen sooner. It's her kidneys. How could this not be serious? So, I was transferred back told that May 1st would be fine. (audible sigh) I really don't like being patient. I want to know what is going on right now. Hasn't the Lord taught me enough about patience these past few years? Maybe it's not sinking in and he's still working on it. I just want to know what to do to help her. I know I'll survive, but it will be a very long 6 weeks. I may call and talk to our pediatrician to see what she can tell me.
I haven't talked about the boys much lately. They're boys. They get into everything, break things, pee on the bathroom floor and toilet seat just as much as they pee in the toilet and wrestle like animals. We finally got to go outside yesterday. I let go of my dislike for all things dirty and chaotic and let them splash in puddles and run through the muddy yard. (pat on my back) It was actually a lot of fun. We went for a walk, played with bubbles and just took some deep breaths of fresh air. Come on spring, we're ready for you. It May 1st wanted to come quickly, that would be really great too.
Wednesday, March 19, 2014
Friday, March 14, 2014
Devyn update
On Tuesday Devyn had her visit to the GI dr at the University of Chicago. It was a long day. We met with the dr who discussed many different possibilities. She suspected in part that she needed an increase in calories. She also feels that a milk protein allergy is partly to blame. She is allergic to one of the proteins found in milk and she will hopefully outgrow it by the time she turns one. That would be so wonderful!
She also wanted to do some further testing to rule out things like kidney disease and a fat malabsorption disorder. I had to bring in a stool sample for testing. In the mean time she called and asked us to bring in another urine sample because some of the bloodwork was concerning. She consulted with a kidney dr after getting the results of the blood test and he agreed that further testing was necessary. I brought in yet another urine sample (this was the 3rd). I got the call today that she thinks the urine sample does indicate kidney disease. She didn't want to make too many assumptions at this point, but she thinks that's what it points to. She sent a message to the kidney dr and we should hear back from her early next week. We may need to follow-up with a kidney specialist at this point. I think we may finally be getting down to the bottom of this.
I also met with a nutritionist on Tuesday. I'm sorry if you are a nutritionist, but I'm not their biggest fan. I think they tend to be very one size fits all. She pretty much told me that Devyn just isn't eating enough. So, I guess I'm supposed to shove food down her throat? She also suggested introducing some formula into her diet to bump up her calories. So, I'm giving her 2 bottles that are a breastmilk/formula mix. I'm introducing more solid foods (which I was already in the process of doing) too. She's also slightly anemic, so they want her to take an iron supplement. I'm always right on the border of anemia and was anemic during both pregnancies. The nutrionist made it seem like this was the only issue and I knew that there was more going on. Whatever. I'll take her suggestions and see if it helps her.
All in all I feel like we may finally be getting to the bottom of this. I'm so thankful that our pediatrician and allergist encouraged us to pursue this. Hopefully by this time next week we'll know more and be able to find some solutions.
She also wanted to do some further testing to rule out things like kidney disease and a fat malabsorption disorder. I had to bring in a stool sample for testing. In the mean time she called and asked us to bring in another urine sample because some of the bloodwork was concerning. She consulted with a kidney dr after getting the results of the blood test and he agreed that further testing was necessary. I brought in yet another urine sample (this was the 3rd). I got the call today that she thinks the urine sample does indicate kidney disease. She didn't want to make too many assumptions at this point, but she thinks that's what it points to. She sent a message to the kidney dr and we should hear back from her early next week. We may need to follow-up with a kidney specialist at this point. I think we may finally be getting down to the bottom of this.
I also met with a nutritionist on Tuesday. I'm sorry if you are a nutritionist, but I'm not their biggest fan. I think they tend to be very one size fits all. She pretty much told me that Devyn just isn't eating enough. So, I guess I'm supposed to shove food down her throat? She also suggested introducing some formula into her diet to bump up her calories. So, I'm giving her 2 bottles that are a breastmilk/formula mix. I'm introducing more solid foods (which I was already in the process of doing) too. She's also slightly anemic, so they want her to take an iron supplement. I'm always right on the border of anemia and was anemic during both pregnancies. The nutrionist made it seem like this was the only issue and I knew that there was more going on. Whatever. I'll take her suggestions and see if it helps her.
All in all I feel like we may finally be getting to the bottom of this. I'm so thankful that our pediatrician and allergist encouraged us to pursue this. Hopefully by this time next week we'll know more and be able to find some solutions.
Tuesday, March 4, 2014
She's a puzzle
Devyn remains a puzzle to us and to the doctors she's seen. I got her into the pediatrician last week and here's where we're at.
At her appointment with the pediatrican last week Thursday she weighed in at 13lb. 7oz. and 26". She pretty much hasn't grown in length and has only gained a little under a pound in 2 months. They consider this failure to thrive. It's a hard label for me to accept. Although I haven't done anything to make it happen it's hard to hear the word failure attached to your child. I was thinking that maybe I wasn't eating enough or drinking enough and my milk wasn't high enough in calories. Our pediatrician was asking a lot of questions about her eating habits, pooping, spitting up and how things went at the allergist. I told her he thought she could be lactose intolerant. She didn't think so. She said she would be unable to breastfeed if she were truly lactose intolerant. So we were back to square one. She said the first thing to do was a urinalysis to rule out a chronic urinary tract infections. She put a bag on her and we collected a sample. We brought it in and the labs came back that her pH levels were a bit high and she had a slightly elevated level of esterase. Obviously we had no idea what that meant. She said that was a sign that she may have a urinary tract infection, but that the lab may have left the urine out too long and caused false results. They didn't even send her the results. I was very frustrated because they assured me they would fax them to her right away. They didn't send them at all! I also need to call about her blood test results from the allergy testing. I'm hoping to get those today.
Our pediatrican asked if I could collect another sample and bring it directly to her office. So, this morning I put my nurse hat on and got Devyn all set up with another bag to collect the sample. I brought her right to the doctor. Of course we got there and there was nothing in the bag. We sat in a room for about half an hour before she finally went and I was able to hand over her sample. It showed about the same thing, just a little bit lower levels. So it was sent off to be anazlyed and now we wait for those results. At this point it doesn't look like a UTI, but we'll have to wait and see.
The pediatrician also agreed with the allergist that this warrants a visit to a GI dr. to see what they think. I called and got her an appointment next Tuesday. We're seeing a dr. at the University of Chicago, because it's been such a great place for us. We were walking out of the hospital after Devyn's allergy appointment last week and realized we've been going to U of C for 3 years now. It's amazing how quickly time has past and how many great doctors have helped us in those 3 years. Now we're on another journey to start ruling things out and try to figure out why Devyn just doesn't seem to be growing. I don't know what to hope for. I don't know if I hope they find something or if they find nothing. The time between appointments leaves me anxious. I try not to worry or overthink it, because it does no good. So, please pray for Devyn and pray for us. I'm hopeful that the GI dr will have some ideas for us next week, but until then we just have to be patient.
At her appointment with the pediatrican last week Thursday she weighed in at 13lb. 7oz. and 26". She pretty much hasn't grown in length and has only gained a little under a pound in 2 months. They consider this failure to thrive. It's a hard label for me to accept. Although I haven't done anything to make it happen it's hard to hear the word failure attached to your child. I was thinking that maybe I wasn't eating enough or drinking enough and my milk wasn't high enough in calories. Our pediatrician was asking a lot of questions about her eating habits, pooping, spitting up and how things went at the allergist. I told her he thought she could be lactose intolerant. She didn't think so. She said she would be unable to breastfeed if she were truly lactose intolerant. So we were back to square one. She said the first thing to do was a urinalysis to rule out a chronic urinary tract infections. She put a bag on her and we collected a sample. We brought it in and the labs came back that her pH levels were a bit high and she had a slightly elevated level of esterase. Obviously we had no idea what that meant. She said that was a sign that she may have a urinary tract infection, but that the lab may have left the urine out too long and caused false results. They didn't even send her the results. I was very frustrated because they assured me they would fax them to her right away. They didn't send them at all! I also need to call about her blood test results from the allergy testing. I'm hoping to get those today.
Our pediatrican asked if I could collect another sample and bring it directly to her office. So, this morning I put my nurse hat on and got Devyn all set up with another bag to collect the sample. I brought her right to the doctor. Of course we got there and there was nothing in the bag. We sat in a room for about half an hour before she finally went and I was able to hand over her sample. It showed about the same thing, just a little bit lower levels. So it was sent off to be anazlyed and now we wait for those results. At this point it doesn't look like a UTI, but we'll have to wait and see.
The pediatrician also agreed with the allergist that this warrants a visit to a GI dr. to see what they think. I called and got her an appointment next Tuesday. We're seeing a dr. at the University of Chicago, because it's been such a great place for us. We were walking out of the hospital after Devyn's allergy appointment last week and realized we've been going to U of C for 3 years now. It's amazing how quickly time has past and how many great doctors have helped us in those 3 years. Now we're on another journey to start ruling things out and try to figure out why Devyn just doesn't seem to be growing. I don't know what to hope for. I don't know if I hope they find something or if they find nothing. The time between appointments leaves me anxious. I try not to worry or overthink it, because it does no good. So, please pray for Devyn and pray for us. I'm hopeful that the GI dr will have some ideas for us next week, but until then we just have to be patient.
Subscribe to:
Posts (Atom)