Entry for January 18, 2007

Entry for January 18, 2007
Ok so this is going to be a bummer post.Where oh where do I start. Well Caitlin is still sick. We are going on almost 2 weeks on Sunday.Caitlin has not been sleeping as good the last few weeks as well. She has been getting up1-2 x a night and its not just a quick getting up. Its a feeding,neublizer treatment and lets see hoe long we can keep our eyes open time. So normally when she gets up it last about an hour or so long. I am tired to say the least. Last night she finally spiked a fever 102.0 and was up literly all night long. Probably in total she slept about 3 hours all together so bascilly I was a zombie today. Ok so now for the even yuckier part. Last week I went in to our ped's office a day after nephology apt. Dr wants us to have a VCUG test done.at the end of this I will post more info about it. But basiclly it is to test if Caitlin has kidney reflux.What fun huh!! We did a weight check and she was 15lbs2oz she did get weighed with cloths on though but I am sure it doesn't make a ton of difference , maybe give or take a couple ounces or so. So here comes the really yuckky part. We went for our monthly Synagis shot(to help with RSV season)and the Dr who gives them was pretty rude.We weighed Caitlin yesterday to check for right dosage and she was 14lbs12 oz again. hmm I thought it was a little strange but I just waited for the Dr. Then nurse came in again and wanted to double weigh her again to make sure it was right. Same thing. So then the Dr started asking me questions like, Was I happy about that and telling me how she was the same weight as last month and that she hasn't gained anything as well as what my ped thought about it. Ok Now I understand the concern because even I get a little bummed out about her weight lately but gosh, this Dr made me feel like this was all my fault and How could I. The Dr then came in and had a little bit nicer attitude but I was still really bummed out about it. Maybe I am to sensitive but honestly it hurts. It hurts when people ask how old Caitlin is, whether I give them her corrected age or real age and comment on how small she is and give me this look like its my fault , that she doesn't eat. They have no idea how much I try to get Caitlin to eat and how much she has to go through with kidney stones and what not. They have no idea how much I fought for her to be here and everything she has been through and they wan't to judge us. No Thank You. It gets so frustrating everytime I get a comment like that or when I have to take her to get blood and everytime she doesn't want to eat and everything else she has to go through. I feel so bad because I know how much she has been through and still has to go through and I wish so much I could go through it for her. Ok so on the plus side. We took Caitlin in to see our regular peditrician and we discussed what had happend yesterday and I ended up breaking down. Its hard not to cry and just let it our because I just don't know what to do sometimes.Our Ped was so great though. I am so blessed because he is always telling me what a great job I am doing and how well Caitlin is doing. Its nice to have a positive Dr and someone who looks at the bright side of things instead of negative things. So anyway we are going to be adding pedisure to Caitlin's diet to try and help get some extra calories into her.We are going to try and push a little bit more of the meals as well as adding a little extra fomula when she drinks it(just a little extra rich)extra calories as well. Please pray for Caitlin. Please pray for her kidneys and also for her to gain weight. I think thats the major thing right now. Kidney stones seem to be doing better for now and we will find out if she has kidney reflux(which I don't think she does) Don't get me wrong I truely am blessed. I am so blessed that Caitlin is here with us. I am so blessed that she doesn't have alot more preemie issues. I am blessed that she is such a happy girl and always smiling. I am so so proud of Caitlin for everything she has acheived. She is so strong and brave. You know I always remember the nurses saying how fiesty she was and how good that is because it means she is a fighter and It is so true. If you felt how strong she is for such a little thing you would all be amazed. She is so head strong and knows exactly what she wants and will stop at nothing until she accomplishes it.There are times when she continues to amze me and makes me laugh so incredibly hard. So this started out a bummer post but really it is going to be happy ending. Like I said just keep Caitlin in your prayers we know that it has carried us this far!!! Oh p.s we are getting a urine culture done to see if maybe Caitlin has a bladder infection whihc might be causing the fever,will post update on that tomorrow Here is some info on the test she will have done-
Genitourinary Imaging
Voiding Cystourethrogram (VCUG)
A voiding cystourethrogram is performed by inserting a catheter into the urethra. Liquid contrast material is then instilled into the bladder through the catheter. X-rays are taken before, during and after filling of the bladder. When the bladder is full, the catheter is removed. While the patient voids, additional x-rays are taken.
Usefulness: A VCUG is helpful in detecting abnormalities of the bladder and urethra. Reflux is detected if contrast is seen to flow in retrograde fashion up the ureters from the bladder. If the bladder is ruptured, extravasation of contrast will be seen outside the bladder in the pelvis or abdomen. Obstructions or strictures of the urethra (such as posterior urethral valves) can be seen on the x-rays taken during voiding.
Limitations: Children and their parents almost uniformly dislike VCUG's because of the pain caused by insertion of the catheter. This can't be eliminated, but it can be made less terrifying if the test is explained to the child and parent and if the catheterization is performed quickly.
Indications: Children with urine infections. Children with suspected bladder obstruction or pelvic trauma where rupture of the bladder is suspected.
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