Hypercalcemia=word of the day

I am going against everything I have been telling myself, I was not going to let myself blog until i got all caught up on my school work (which I am not) but there is just so much going on that I had to get some of it down before more happens. We ended being hospitalized last time for 25 days. She was on oxygen and having some respitory issues but mostly it was about the calcium levels being too high and the creatinin levels showing danger to the kidneys. We flushed her with tons of water and lasix and it just kept coming back. Meanwhile I woke up coughing and feeling like I got hit by a truck and had a fever even so I went to get checked out and turned out I had pneumonia and a zoster in the middle of my forehead AGAIN!! They gave me antibiotics and antivirals and I just felt terrible. I wanted to curl up in a ball and disapear but I still had to have my focus be on her. Not to mention my schoolwork that I could not even look at because I felt so bad. I just kept putting it off and putting it off and one week of late work turned into two really quick. Meanwhile Baybeblue was slowly but surely getting better. We basically needed to get the same amount of fluid that was going through her IV to go through her gtube to keep the calcium down. The only problem was that we were running at a rate of 45 ml an hour and needed to get to 74 ml of food per hour with like 600 extra mls of water per day. Everytime we tried to bump her up a little she would throw up because there was too much liquid sitting in her belly. Her body was just not digesting it fast enough. Puking is really bad for her because she asperates but the Docs didnt seem to think that it was too bad because she hadnt asperated one bit of it. My thoughts were immediately WELL if you are not worried about her asperating then she should be able to have jello by mouth again RIGHT???? So yes the said that was valid and Baybeblue got her Jello back in her life. 6 months without a drop of even water in her mouth and now she can have any flavor she likes. So far lemon lime is one of her favorites ( sugar free of course). Then I started to get sicker, I started coughing up more black stuff and now was having stomach pain that felt very much like a kidney stone, again I went to go get checked out and although thankfully there was no kidney stone, they did say that my pneumonia got a little worse so maybe that was causing me pain. Then the next morning the docs came in to talk to me and woke me and I instantly felt like I was sleeping on something sharp on my head. I sat up and felt and nothing was there, thought maybe my pig tails I was wearing were too tight so I took them out and tried to lay back down. All the sudden the pain was overwhelming, I sat up and grabbed the first thing i saw and started throwing up. The pain in my head was so intense it felt like someone hit me with a baseball bat. This was not like any of my other migraines or like any pain I had ever felt before, It was sharp and I couldnt even hardly talk. The nurses had to put me in a wheelchair and rush me down stairs crying hystericaly and throwing up non stop. I got to the ER and they did a cat scan which looked ok so they said they would need to do a spinal tap. I remember deleriously that I was trying to talk them out of doing it, I tried explaining to them that I was too scared and that I would probably freak out if that happened. They then explianed ot me that I could have menengitis or bleeding in my brain and it had to be done. I reluctantly said ok and I think I even signed a release of some sort but shouldnt have been allowed to because I was already sooo out of it. They set up all the supplies and told me they would be numbing the area and that he ( the Doc ) would be instructing a student through the process. I started freaking out saying no that I couldnt, that I would loose it. I told him I have anxiety and even if I say its cool I could still really freak out. He didnt listen and I sat and listend to him instructing the student about checking hip bones and drawing a visual line to the spine and they were poking me all over and then they did the first numbing needle and it hurt so flipin bad!! I started crying and then they did more and each one I got more and more upset. Then they said it was time to do the tap. I could hear and feel the student trying to figure out where she was going to stick the needle in and it was suposed to be numb but holy crap she stuck it in and I felt it hit the bone and then she tried to wiggle the needle in between and I felt it grinding the side of the bone. She said nope I hit the bone and he said pull it out and I flipped out yelling and said that I didnt want her to touch me again that I was not ok. Then the doc demanded that I lay back down in the fetal position with my back curled out but I couldnt do it cause I was so scared that my body literally would not let me push my spine out there. It was like telling a kid to hold out there hand so you can smack it times 1000. My Dadddy showed up right then and I yelled for them to bring him in. They also got some big guy to hold me down. The weird thing is that my memory of the whole thing doesnt involve any faces because I was so messed up from all the Dilaudid and versed they had already given me. ( obviously the versed didnt work cause I remember it all... I think) anyways... So the big guys holding me in the fetal position and my Dad is holding my upper body and my hand and He kept saying watch your little pocket which at the time I had no idea what he was talking about but later realized there was a slit in my fricken gown rite over my boob where a pocket would be so I was pretty much exposing myself. The Doc went to try again and when he poked the needle in I jumped out of the postiion and screamed, "I thought It was suposed to be numb!!" Then I tried to sit up and yelled at him if you want me to lay still why dont you just flipin knock me out already, the Doc gave a head nod and said some medicine name, boom in my IV and OUT!! The next thing I remember is hearing the nurse saying my name CYNDY I woke up and she said ok just needed to make sure you could wake up and then she told me to go back to sleep. They then came and told me that there was too much pressure on my brain which is what had been causing my migraines and this headache I had today. They needed to do some more tests and then I would need to see a neurologist to find out where the pressure was coming from. The last test ruled out eye hypertension as a cause so time to get myself to the brain doc.
Another couple days in the hospital to make sure Baybe was tolerating her feeds and boom she comes down with a new fever. Now there thinking that she had caught whatever I had or that she had goten the zoster virus from me which makes chicken pox in little kids. So we got moved to isolation room and waited for all new blood tests. No rsv and nothing serious and the fever resolved on its own. What the? once again we have no idea what that was about but she was doing great and after a few more days in isolation we were ready to go home.
Everything lookin good we headed home on a saturday just in time for the huge family poirtrait that was planned for Sun. We barely made it, but we made it. The next week I spent trying to catch up on all my bills that were due and my school work that was so far behind. I had a couple great days with the kids all together we had a good bye dinner for my best friend Hush who moved to California. She was the one that traveled to California with me and Baybe. we just hungout and all soaked up being together and things were slowly getting back on track. Baybe had her first calcium recheck one week after we were home and it was great, pheww we made it a week home and shes looking good this was a great sign. We had a wonderful gift from my Angel friends Donna and Tracey. They came and brought pre made meals for us for the next week so I didnt have to cook, god I love them and I am so lucky to have met them. And the food was wonderful :)The next week Taylor broke out in a Rash and started his new darth vador breathing and severe night time snoring and lala broke her baby toe at school. After a trip to the Doc for each of them, Lala got some foot wrap and an excuse to not clean her room and Tay got antibiotic cream and has bad allergies so will hav to take zyrtec now and do nasal cleanse stuff. I also decided this would be a good idea to start them on some vitamins so Flinstones it is :) There like who are the flinstones?? Im like... shut it!! anyway. I ran into a couple little snags with my own medical issues and still having the headaches and my back still hurts really bad from the spinal tap. I went to the Doc for my symptoms and they actually had attitude with me because I went to the ER while hositalized with Baybe instead of calling them. I tried to explain everything that had been happening and they did not care. They said the insurance was giving them a hard time and that if I wanted to stay with there office I had to come see them before I go to the ER. I explained this wasnt possible when i am hospitalized with her and told them Peace out!! My brilliant plan was to get a primary doc located up at OHSU so that since Im always here, I can just see my Doc here, After spending a week trying to find one I found out that none of them are accepting OHP patients so im pretty much screwed now. I think there should be a Doc that specializes in working with parents like me that run off our kids medical schedules not our own. I really dont know what I could be doing differently. I just dont have that kind of time I need for myself rite here rite now.
We had a wonderful visit from my aunt Michelle and cuz Katie and I got to meet her little man Ryder, he was soooo cute. Had a great evening with my Daddy and Sista lissa but Baybe started to act a little fussy which was out of her normal so it kinda weirded me out. Then I noticed some little tiny leg spasms. This is what happened before we were hospitalized last time. In my heart I knew it wasnt good. The next morn was Monday and I called to let them know that I would be bringing her in for a blood draw but that i would need a doc to call me rite after because I was pretty sure the calcium had gone back up. I had to get Taylor from school at 2 so I waited till then and headed up to OHSU. We did the blood draw and then we had to rush home to go get Lala and wait for the phone call from the Doc. Got Lala and then the phone rang, the Doc said that I needed to bring her right back in to be admitted immediately. I got on the phone and got Lalas grandma Pam to come get her and get her to school and got ahold of Tays Dad and he came to get him and we headed back. Today is now Tuesday and we are here stuck now until we get to the bottom of this calcium issue. Hypercalcemia- with no known cause, no calcium intake, we have flushed and flushed and still keeps coming back, her thyroid is fine, her parathyroid is fine, vitamin D level fine, everything is fine but the creatinine which shows signs of kidney stress is elevated too. Im not sure what is going to happen now but we have to fix it. Pretty positive at this point the only place the calcium could be coming from is her bones so that is now a huge concern. Our options are to flush with tons of water and now we have added saline to her feeds. next step will be possibly removing her from the ketogenic diet, and if that doesnt work then we will have to try some medicines that will reduce the calcium but they will also cause potentially dangerous side effects.