I have been a little off my game lately and I know I havent blogged in a while but I got a very beautiful message today from an old friend Lauri and she totally gave me the motivation I needed to share what is going on. Things have been really very bad lately. The hypercalcemia never got any better. We bounced back and forth between the hospital and home each time trying something a little different. We bumped up her fluids as much as we could to flush out the calcium and when that didnt work we changed her regular water to saline water in her formula. When that didnt work we changed her formula to a no calcium type called calcilo (go figure huh) and still her calcium level kept coming down and then a few days later it would be right back up. They then decided that her case of hypercalcemia was rare enough that they would contact the number on endocrynologist and calcium specialist in the world. His recomendation was that one child in the entire world had this before and she was on the ketogenic diet as well. He said to try removing the diet (which is the only thing that has given baybe seizure control) and try a suppliment of the hormone calcetonin. This is a hormone that your body produces but his theory is that maybe in these two cases the ketogenic diet had caused there bodies to stop producing the hormone. So they snagged a bunch from some salmon ( thats where they get it, salmon produce a large amount of calcetonin i guess) and I had to give her injections at home in her thighs and arms 3 times a day for several weeks and still nothing no improvement. She was at that point on a diet of almost complete saline and a little calcilo so her calcium was being flushed out continuesly and her calcium level was still riding just below a harmful level but was still high. At this point they told me that there was nothing more they could do for her and it was time to wait. I knew now that we were at her maximum volume of fluid so if the calcium rose again there was nothing more we could do. I decided completely against the dangerous med they were thinking about giving her, I found out that basically it would aggresively drive the calcium back into her bones but that once it was administered it would continue to do that for the rest of her life. This would fix the hypercalcemia (high calcium) and eventually cause hypocalcemia (low calcium) and would be irreversable. They explained to me that the hypo-calcemia is much more dangerous than the hyper-calcemia and is extremely dangerous for kids with seizures. Im not sure how anyone could think this was an option but I am just sick of her suffering. I had to do alot of soul searching at this point. I sat the docs down and told them I wanted to be told the truth and the whole truth no matter how difficult it was I needed to know if she was going to live through this if it didnt get better. Sad to say they couldnt give me any answers. I told them I didnt want her sitting in the hospital hooked up to machines to be how she spends the end of her life so they needed to help me figure it out. That day I started having some strange but overwhelming thoughts that had been building in the back of my head come to the surface. I dont know where the thoughts were coming from but they had to do with God and my own faith and my understanding of both. I just was overwhelmed with the prospect that maybe I was completely going against gods will by fighting this so hard. I felt like the times she has hypothermia and blood pressure problems and the blood transfusion, we never found a cause for any of that and it was only coincidence that we even found the problems. I was bringing her in for other things when we found them. I went from coming to the hospital cause i ran out of ketone checkers to being rushed to the ICU with her. Now this. I thought she had pneumonia thats why I brought her back to the ER 3 times and looked crazy and thats why they did a full blood panel to show me she was fine and thats when they found the hypercalcemia. Not because she had symptoms, just by chance. She could have died. Was that gods will and I keep freakishly stopping it. I couldnt help but ask myself if everything people say about god is true than do you think he wanted little beautiful babies barely staying alive by tubes and machines and heacily sedating drugs. Is modern medicine possibly crossing the line and refusing gods will. Am I making her suffer when she could be at peace somewhere else? These thoughts started to consume me and the headaches took what the thougts didnt. Then the craziest thing happened, my friendly faced hospital priest came walking through the door. He asked me if I wanted to visit with him and I just lost it. I said yes please I have somethings to ask you and talk about. This sweet man has been coming to see me n Baybe through all her issues and he prays with me and gives me communion and always makes me feel better but this day I laid a huge load on his heart. I told him everything and we both cried. We prayed and we talked through it. I asked him if he thought that god was doing this so that i could show my strength and encourage others to do the same? He said no god does not do that. I asked him if he thought that it was gods will to take Baybeblue, he said that he thought that no matter what eventually whether here or in heaven Baybe would be ok, it was me he was now concerned about. He said he thought that I should talk to another priest, the one he talks to from his church here by the hospital. I spent that whole day in termoil, i cried nonstop it was so intense. This beautiful women showed up that I had never met, she was a friend of Donna's and was in her prayer group, when I saw her i hugged her and we also sat and cried together and prayed for Baybeblue. My parents came, and all of her other granparents came and then the other priest came as well. I asked him the same questions I asked the other priest. His responce was this. he said that in life we often want to find a place to put blame over painful things, but God did not do this and he is not controlling what is happening. He said that if it was 100 years ago Baybeblue would already be gone, that it is humans that are changing the world and saving lives, but that the answers that I was looking for were inside me not him. He also expressed concern over my well being and said that the only choice to make was whether or not to put it in Gods hands or not. I talked again with the Doctors and even though they told me the calcium was staying strong at its posted high level, I wanted to take Baybeblue home where she is happy and theres no strangers or needles and put our faith in Gods hands. That night my beautiful prayer angels came to me and they healed my heart. Donna, Tracey, and Cynthia, 3 of the most amazing people I have ever met in my life. They sat with me and we cried and we laughed and we prayed ( and we all tried on big girl diapers)..(and theres a pic of that somewhere) and they actually prayed with me until midnight that night. I was so exhausted in every possible way at the end of this day, but woke up in the morning with energy and was ready to take her home and enjoy our life together. Theres one more peice to all this and that is my hero behind the scenes through all of this Jimmy. He was a good friend in highschool and an amazing friend to me now. Since I had been going through all of this with Baybeblue we seemed to talk more and more. I have never met someone that could literally take me from a full rage to smiling in under a minute. He knows exactly what to say to me to make me laugh and exactly what not to say to make me mad. I truly thank GOd for him everyday, I hope I can repay him someday for all he has done for me.
I took Baybeblue home and I swear that she woke up in the morning and was a new Baybe. She looked at me and smiled really big and started trying talk. she was active and happy and huge eyes looking at everything. She started trying to sing in the car with me and was gettin pissy about wanting bites of stuff, it was just overwhelming and amazing. She was using all of her signs like I love you, and waving hi, and blowing kisses, she even was trying to sit up and figured out how to crawl across my bed, well out of her bed area into mine. The only negative thing in our whole situation was the nonstop pee from the saline in her formula. Then a few days after being home, after researching like crazy I decided to go through all of her meds again and check them for possible links to hypercalcemia. Sure enough within a few hours I found that one of her meds levocarnitine actually has a side effect of hypercalcemia. I freaked out and of course it was like 1 in the morning so there wasnt a damb thing i could do or anyone i could tell. First ting in the morning i called the hospital to tell the docs and that went terribly. It was the weekend so there was no one there with the authority to talk to me about it, they had no idea about the medicine, and told me not to take her off of it until I talked to the dietician and other docs when they come back on monday. SCREW THAT!!! there was no way I was going to keep giving her a med that could potentially be causing all these problems in the first place. I researched the med more and made sure it wasnt something that would effect her if I took it away. It basically was something that was added to her meds to help with her muscle tone. I went to the pharmacy and talked with our pharmacist and asked him to look up the med for me and check for any negative reasons not to just take her off, like whether it needed to be weaned off or whether there were withdrawls and there were none, in fact it stated that if there were any negative side effects than you should discontinue the med immediatley so I DID!! A few days later Baybeblue started having increased leg spasms and also an increase in seizures had been happening since we had been home so I took her in for a check of the calcium. I actually was thinking that it either was up really high again or that maybe i fixed it and now she had low calcium form the saline. But no the result was that the calcium was the same, sitting rite below unsafe but still high. I just cant believe she is living off almost pure saline and still the calcium is sitting high this doesnt make sence.
Things were going great at home she continued to become more alert and communicate more and more each day and then all the sudden she started crying. she cried for about an hour and i did everything I could to calm her and nothing worked so I took her back to hospital again. I was sure she either had a kidney stone or was constipated bad, either could happen from the hypercalcemia. They did ultrasoung and xrays and blood work and... NOTHING. there was absolutely nothing wrong with and the calcium was still the same, high. Relieved and confused we went home again. The next few days were amazing we hungout in the sun, Bayabe got a tan, we did yard work, hungout with my 3 babies and just loved life. Then the morning of thursday the 17th came. I had been up all night with a tummy ache so we decided to be lazy and stay in bed all day which is baybes dream day. we played and smiled and snuggled and then she started to have a seizure. this was nothing abnormal she had been having about one every 30 min or so, I scooted close to her and layed over her, rolled her on her side and was patting her back when she clenched up and started screaming. Sometimes she does this during seizures but this was different. I had never heard this cry before. the seizure was over but she continued to scream, i sat up and saw that i was laying over her leg so i thought maybe i had twisted it or something when i rolled her on her side, I started moving her legs to see and her right leg would not kick me like she always does, it felt weaker than the other one and when i bent it up she screamed louder so i grabbed her and we rushed to the hospital. I told them everything that happened and they rite away tried with some pain meds and nothing helped. They took her for an xray of the leg that i thought was hurt and we waited. She was still screaming at this point they tried 2 doses of phentenol, 3 doses of morphine, ativan to calm her and still screaming. The results came back, her femur was fractured, and I lost it... They all comforted me and thought i was crying because i felt bad that i did it, and yes of course i felt sick inside over that, but also i was instantly flashing through my mind that this is the beginning of her deterioration. If her bone could break that easy than soon I may not be able to touch her, and this is how she was going to spend the end of her life, in pain, that is devastating to me. Her quality of life is now 0. she is in so much pain that she is not aware of her surroundings or me at all. I cant comfort her cause she hurts to bad, there is nothing i can do to make her feel better. No Jello or whip cream would ever make this better. I was so sad for her, I was going to take her to the beach next week for some pool therapy and palying in the sand she so would have loved that and she would have been so happy, now she is stuck in a huge cast through the summer and wont even enjoy another day. They had to hospitalize us because we are still at this point unable to control her pain. All say today she has had tons of morphine and percocet and ativan and valium and not one minute of rest. This morning she was actually kind of peaceful but they came in and said that her leg was in a bad position that showed up on the xray so they had to remove her cast and put on a new one. After that she was so upset that she hasnt calmed down. i finally asked them to try switching the morphine to dilaudid and she seems to be calming down a bit now, maybe even get some rest tonite. On top of everything because of the pain meds she is back on oxygen unable to maintain her breathing on her own. without in on she drops fast. she is getting all congested from the meds too she has lost her swallow again. I am hoping to get her home as soon as possible but we are dealing with some harsh reality today. I got to talk to every doc i wanted to and ask all the tuff quesetions, how long can someone live on saline? how long can she live without any calcium in her bones? NO ANSWER no one ever has so they have no idea. I asked if they thought her bones would start weakening so fast and they said no this was much fster than they thought. I asked if we should start watching for other signs of renal failure and what not and they said not yet, that all her bones would go first. I cant even imagine the hell this little girl is going to have to go through and how long it will last no one knows anything!!! I dont kjnow how Im going to pay my bills and I dont know how Im going to hav summer with the other two kids and I had to drop out of school and everything is falling apart around me and all I can think about is her. How can I make everything perfect for her so she doesnt have to be upset or feel pain or go through anything else. I will have to be so careful and I wont be able to take her anywhere. My whole life I thought was already turned upside down is now REALLY upside down. I am prayng at the top of my lungs please God do not make this little angel suffer anymore, there is no way she deserves this, no human does. I love her so much I would give my own life, please just take away her pain it is not fair or just or purposeful in any way. I would do anything for this little angel, she has saved my life and so many others, she has made me the person I am, she gives me strength, Please just let her feel peace and love that she deserves every second. Im sorry for all that but I am so helpless rite now. Please everyone tell everyone you know, pray for my Baybeblue, pray for her to have peace. Thank you I love you all, I will post again as soon as I can.
