So last week we were waiting on the results of the test for her kidneys. I got to stay in for the test and even though i conented for sedation and the nurse was there ready, we never even needed to use it because she was so out of it. They emptied her bladd completely first and then with a catheter began to pump dye into her bladder. On the screen we could watch the liquid going into her bladder as it got bigger and bigger. At one point they mentioned that they were at the normal size of a bladder in a child her size but the liquid kept going in. The image of her bladder literally blew up into the shape of a giant alian head inside of her and when they wer close ot capacity the worst thing happened. The liquid from her bladder went back up into her kidneys. This is what the test was watching for in the first place so it was confirmed that she is most defenitely refluxing urine back into her kidneys which is realy realy not good. At that point the fact that her bladder was atleat twice the size as it should be was also determined. Once they had enough image it was time to wait for her to pee, and she refused. they ran water and even poured warm water over her but nothing worked. I lifted up the blanket to feel her belly and was shoced that there was a huge deformity sticking out of her like she was pregnant with a road cone. They told me not to touch it cause it would make her reflux worse. Eventually they had to use the catheter to drain the liquid, she never peed on her own. This explains why her bladder is stretched to twice the size becaue she is holding it so long that its stretched it out and obviously so far and so hard that the pressure inside is causing the urine to push its way back up. Again it was time for me to sit and wait, even though I stayed for the procedure so I already knew the results, officially I needed to wait for the Docs to come and relay all the findings. They came and asked me millions of questions about medical history of myself and out whole family. They explained to me the danger of having bacteria that could enter the bladder and then during reflux it would then go into the kidneys causing infections, damage, scaring, and eventually long term kidney problems. The next step involves many more tests on now each specific part of the Urinary tract system to determine where exactly the problem lies. i will explain each test more specifically as we come to that point. For now they are concerned with her not emtying her bladder for discomfort reasons, further damage, and also that it could be a sign of many other things. When the Urologist team came to physically examine Baybe they also found several abnormalities involving her lower spine and her rectum. First of they did a rectal examination and she managed to poop on every blanket, her teddy bear, and 3 of the top urologists here :) thats my girl, bet they wont forget about you!! after cleaning her up they told me that the things that they found are going to have to be checked out with an MRI of her lower spine to determine if this abnormality is responsible for the urinary issues she is having. THey also said they she has 0 muscled in her butt so she would need ot go on miralax starting right away and everyday from now on, as well as profolactic antibiotics everyday from now on to prevent any future infections until we get it all figured out.
Other than all that Baybeblue has continued to have mild low grade fevers between 99.0 and 101 and seems to have sum level of discomfort ranging from irritated to miserable. Her respitory is doing a little bit better although she still has a nasty sounding cough, she is off the oxygen for the most part. She has required it several times off and on but only for a short period of time and once at night. Her tummy has been causing some issues now she has thrown up several times which is really bad because she asperates and when i vent her belly ( let the air out) clear fluid has been pouring out large amounts. they have no idea what this could mean because the liquid doesnt even look like formula and shes never suposed to have that much liquid in her belly at once. THis is why she is on continuous feeds at a slow drip so there will only be tiny amount in there at once incase she vomits there wont be that much that comes up. We are still in the process of trying to figure that out but the problem lies with when this happens i wanna reduce her feeds but we have to keep the fluids high because of the calcium, which is the next subject to deal with.
Her calcium after pumping her full of extra fluid belly and IV and giving her lasix tha cleans you out, she finally came down to a normal level. We then waited until fri patiently to retest and hoping that issue was resolved we were saddly disapointed. Yesterday her calcium went back up and today it went up again. NOBODY has any idea where the calcium is coming from there is none in her totally controlled diet and everyone is trying everything they can to figure it out. Again like i stated before our goal is to get the calcium out and keep it out but the main thing is that we need to know what is causing it cause that could be serious. We are very disapointed about the calcium situation because we are basically starting over with that problem. I cannot go home until this is solved because she cant have IV fluids and lasix at home. For now everything is still up in the air and very frustrating. I am trying to keep it together and look positive but things are starting to fall apart as usual. I dont have my school books again and I have to go get them today but dont think anyone is coming here. I have to figure out where the kids are going to go for easter today because they were going to go to my parents but my poor Daddy ended up in the emergency room last night having severe pain in his knee that he had surgery on already. I was really hoping that they would be together in the morning but its not lookn like it now. Taylors Dad wants to have him for some plans they have and although I am reluctant because of how he has been acting lately, I dont have much of a choice at this point. Layla I think might go with my sister or her grandma, sucks i cant be with them I have never not been on easter and I used to have all these fun traditions that have now kinda faded due to us always ending up apart :( Im stressed about bills that always seem to pile up while im in here and school and my house and my puppies, thank goodness I have so many people that love us and help us or our lives would be in shambles.
I had Lala n Tay come stay up last night for a slumber party and it was fun, we worked out and played video games and watched movies, dinner and hot chocolate and lotsa time to just be together and I loved it. Baybeblue was super happy to hear her big brother and sister and I got sum super cute pics ill share. For now looks like we will be dealing with the calcium and the tummy issues through the weekend and then will be doing the MRI on monday. Also because of her issue with peeing regularly enough on her own and the not emptying the bladder all the way we now have to use the catheter on her 4 times a day and looks like i will be trianing to do the cathetering at home as well :( really not looking forward to that. I will add mroe when I can love you all, stay healthy and love and appreciate your family and children :)
