Doernbecher day #7 so far....

Yes things were going pretty well there for a minute, but we are back in doernbecher where we have been chillin for a week now. It all started out with Baybeblue spittnig up and asperating. Four days later she got a fever and I immediately called her Doc and told them I think she may have an asperation pneumonia starting. They advised us to go to the E.R. at Ohsu to get her checked so we headed right in. After being there the whole day they said her chest xray looked fine and her fever was gone so they sent us home. The nnext day she had a new fever and started with diarhea. I called the docs and they said the notes stated if she got another fever she needed to go back in so we loaded up and headed back up the hill. Again we spent the wole day there and the chest xray looked good and her fever went down again so they sent us home again. That was Fri, by mon they called and said something showed up in her urine so they started her on an antibiotic. She started that on tuesday and by wed. she was fevering still and now was back on oxygen having trouble breathing. I again called the docs and they sent us back in. After another lovely day sitting in the E.R. alone for the third time in a week they said she would need to be admitted. They said that they got a weird result on one of her blood tests and that they would re run the test to make sure but basically she had an excess amount of calcium in her blood. So this is a rare thing to happen to a child like Baybe because she has no calcium in her Ketogenic diet and she doesnt take vitamin D which another source of it. They explained to me that there were only several specific situations that would cause this to happen and she doesnt seem to fit into any of these categories. One was a genetic disease that obviouly doesnt run in our family, one was a disorder that had very distictive charectoristics which she doesnt have and the other is cancer which they highly doubted was the case but they were running a few other tests that would rule it out for sure. Meanwhile we got a new team of Docs that deal with Hormone stuff called the endocrinologists, they would be the team that is trying to figure out where the calcium came from and trying to get the excess calcium out of her body. They began the process with alot of IV fluids and Lasix to fluch her system out and hopefully take the calcium with it. She also began dieretics to keep her from blowing up from all the extra fluid. The next day they checked her calcium and it didnt work, the calcium was still there. They were at this point completely puzzled by the whole thing. I began to ask what the bad things that can happen with too much calcium and basically it causes kidney stones and can clog her blood stream if she gets too much, but mostly it was the process for how it got there that was most concerning. The blood test for Rsv came bak negative thank goodness and then it was time to just wait for more results. Meanwhile the lasix and the fluid was making her pee like mad crazy, I have never seen so many full diapers in my life!! She kept up with the mild fevers and at night her oxygen requirement increased and her coughing began to get worse. She started having coughing fits where she would start coughing and hardly took a breath in between just one cough after the another until she was suctioned and her oxygen turned up for a bit. Also through all this her Resperatory rate is through the roof. they started by raising the alarm from 30 to 40 and then to 50 so it wouldnt be alarming constantly and now its going up into the 60s still they have no idea why that is happening or what it is related to or if there is any connection between the calcium, the respitory stuff and the virus that showed up in her urine. Im sitting here this whole researching the crap out of everything trying to understand everything they are talking about and trying to come up with some of my own ideas too. On another side note Baybeblue did not have a single seizures for a full week which is something that has never happened unless she is realy sick. Im sure this has been mentioned before in previous blog posts when she was hospitalized. Over the next couple days more blood tests came back and Baybeblue was having to be poked multiple times a day. THe docs promised me that only the specialty IV pandas team would do her blood draws but the regular blood people kept coming and I was getting stressed out about that and only letting them try once on her and she was running out of veins so we began dicussing putting in a PIC line where they can draw blood out of repeatedly without continuesly poking her. Everyone decided that we would do one more blood draw and if the calcium went down at all we would wait on the PIC line and reduce the amount of blood draws but if it stayed the same or went up we would go ahead and do it. Yay the tests said the calcium had finally started to go down and we decided against the PIC. So then the next day the nurse decided to just attempt to get blood from her IV. the one that had been there for 5 days? I had never heard of this before but sure enough she tried and blood came right out of it. WTF she never had to be poked this whole time. So since then they have drawn all of her blood from the IV and its still funtioning just fine. So as the Calcium comes down they realize that she is also anemic, and she has a zinc deficiency. They explained to me that zinc is what helps hold the calcium in her bones so that could possibly be whats causeing the calcium to come out of her bones and into her blood. So we started Baybeblue on zinc which she will need to take from now on. The anemia they are not sure what is causeing this butt they have a few more tests to do regarding that now. # possiblities. Either its form having so many blood draws, she is bleeding internally somewhere, or she is lifelong anemic from her other conditions. We still havent goten the results on that. Finally we got her calcium down to a good level and now we are cutting her off the fluids to see if it comes back, we have a blood test in the morning to find out, fingers crossed or wele be starting over. So on top of everything yesterday she started crying in pain and wouldnt stop for several hours so we had to giver her some morphine for pain and that really helped, this then promted us to try and find the source of the pain. I went to vent her belly and a ton of air came out along with some yellow mucous that I had also found her mouth full of earlier so she was obviously swallowing it as well. They wanted to do an ultra sound on her kidney and her bladder to make sure there was nothing going on there too because of the prior UTI and now the new signs that showed up in her urine. We waited all day for the results and they said a little something showed up in the kidney so we would need to do the next level of testing which involves adding a dye to her urin and watching it travel through the lower region and doing its business to make sure everthing is functioning rite. The fact that she has 3 urethras 2 of which funciton may also play into this whole picture as well. So that is where it stands right now. She is off the fluids and we will re check her calcium in the morning ( keep fingers crossed ) and then tomorrow we will get her pee study done and then wait for more results. Wow that made me exhausted. I will hopefully have more good new to report in the next few days and no more weird suprises.

So I would like to share my overwhelming feeling of love that I have goten from my friends and family. I know alot of people think facebook is cheezy or even a waist of time but the responces that I get on my posts and updates about Baybe are so loving and sweet. Everytime I am starting to feel a little bit down someone says something just amazing and it brings me right back up. I have old friends from highschool that I cant wait to reunite with and other Cerebral Palsy moms that all share in our same struggles and it just fills me with happy feelings. This is suck an amazing life line for me while Im in here, i wish I could thank the person that made Facebook myself, Words just cant even explain. I would also like to say a few words about the negative side to everything that is going on. There are people in this world that cant deal with the whole life that goes along with raising a disabled child. I think that some people can deal with it and have compassion for it and some people it scares them too bad and they run away from it. It breaks my heart to think that there are people out there that would rather turn there backs than have to deal with the emotions involved in my situation. What they dont realize is how lucky that I and all the mothers of diabled children that I have met. We all have been given a gift that others just cannot understand. I believe that life is about tests of strength and courage everyday, we have a choice weather it is a sick or elderly family member or a disabled child. Do you stand by there side through thick and thin or is the pain too much and you turn your back and run? I think this shows not only strength but also maturity. And if a person turns and runs is it there fault or is it just the way they are wired differently? Can they ever outgrow it with time and increased maturity or is this the way they will always be? What makes people know if they can handle it or not? Why are some people drawn to something so painfull and some just do not even know what to say? I wish I had the answers but what I do know is that no parent of a disabled child should ever have to convince someone else to care or be apart of there lives. This opportunity is a gift that should not be taken lightly. I believe that children like Baybeblue are a test of our overall humanity, and it is crazy to be the one that sees people through this weakness and compassion filter. I see the people that feel so much love in there hearts that they cannot help but just say something whether it is the right thing or not they just want to reach out and help and then there are the people that say nothing at all! I feel bad for those people, not because they didnt say something nice, but because they didnt know how, and they miss out on the opportunity to be apart of the most amazing experience I have ever had on this earth and that is to know the love of a disabled child! Thank you to all of you that have reached out to Baybeblue and I. People are always telling me they dont understand how I stay so strong and the honest truth is im not, I just have so much love and support around me that I have like all these arms around us holding us up and keeping me hoping. Literally everytime I start to get really sad and depressed about how hard everything is, someone just says something and it rejuvinates and re motivates me. Thank you to all of you, We love you all and are so glad you are apart of our lives.